If you have ever flown, you probably heard a cabin attendant’s pre-flight instruction,
“in the event of rapid cabin depressurization, oxygen masks will descend from the panel above your head”.
Then you were instructed to “put on your own oxygen mask first before you assist your fellow passengers.”
Hearing that simple directive always gives me a guilt twinge — I am a caregiver at heart — even though I understand the reasoning behind it. I know if I pass out from lack of oxygen, I will not be able to care for my fellow passenger.
As we fly through this life, my wife is my fellow passenger. My wife has Multiple Sclerosis and I know first hand that caring for an MS patient has its moments of “rapid cabin depressurization”.
Nonetheless, grabbing for my own oxygen mask first still gives me a twinge of guilt. But I believe the oxygen mask metaphor is valid; an MS Caregiver must first don his or her own mask before assisting their fellow passenger. This is the only way to consistently make it through the repetitive “depressurizations” one experiences when caring for an MS patient.
Multiple Sclerosis is a difficult disease to experience. Caregiving of any type is difficult. Providing care for an MS patient has unique stressors so it is critical that you care for yourself, too.
My goal for this blog is that it become a helpful resource for other MS Caregivers. I hope each you will find help here and that you can use what I share to improve your own life. If I can share anything that makes the caregiving lifestyle easier for you, I believe it will be easier for you to be more helpful to the one for whom you care.
I think one of the best places to start reading this blog is the article, Finding Caregiver Support
No we don’t belong to a support group. He doesnt want to see what will soon happening to him. He is fighting any help i.e. cane.
For Christmas his dad had a electric scooter delivered. He said he won’t forget this Christmas. The scooter is out in the garage in a box. I hope it will stay there for a looooong time, but it’s good to know that we will have it if we need it.
My hubby has MS since 2002. I joke that I am his personal asst. I do things to help in every way. We just got in a fight over what hospital he should go to for IV infusion. I just asked a simple question because I wasn’t sure which place he wanted to go to He flew off the handle with, “you know which place!” I really didn’t know & he insisted I was just picking a fight. I knew there was no chance of him understanding. He said he didn’t know what was wrong with me. It kills me when he does this. I feel so alone & I can’t talk with family because they don’t understand. They just see him as being mean to me & that upsets them. Only people who are close to this can understand. I’m tired of crying over the way he can get. I do so much for him, I have walked on eggshells around him, but today I gave it to him. I don’t like who I am right now. From all the stress, I’ve gained weight & just stress eat. I need a good person to talk to.
Hi Pam,
Are things better since you posted in August 2010? I am a MS care giver too, my name is Becky and I live in Washington State. Some times we have to grown hard shells and just try not to let them lashing out upset us, I know it is easy to say. I try not to react when he does it, if I do then the ping pong starts
and that is not productive, if there is no one to fight with they give up. It sound like a typical man though
nothing is ever their fault, sound familiar? I have gained a lot of weight to from the stress though, I head for the fridge and now I have 50 pounds to get off, if something happens to me there is no one to take care of him and certainly not me, we need to try to spend time on ourselves so we do not get lost or worse sick too. hang in there.
Best Wishes,
becky
Becky and Pam,
I am also in Washington state and have a husband with Relapsing Remitting MS. He lashes out and has bouts of over reaction aggression. I have been with him for 14 years and I know he wasnt like this before MS. Feel free to contact me if you would like to talk.
Thanks,
Hilary
Thank you! I am my husband’s caregiver and sometimes I feel so alone but this site shows me I’m not.
[…] I’m an MS Caregiver […]
I’m the caregiver of my mom. I am now 18 but it is a very stressful and thankless job. I do everything around the house and when my dad and sister come home from work, instead of thanking me, they expect more. It’s tough also because I’m homeschooling myself to get my diploma and the only time i have time for homework is after 11:00pm. It’s taking a toll on my and I end up crying and crying. thanks for showing me im not alone.
Your strength and dedication to caring for your Mom while preparing to launch into adulthood are remarkable. And you obviously have your hands full and feel overwhelmed. Sometimes, learning one is not alone is actually enough to be helpful. But I don’t think it solves the problem of too much to do with too little support.
You did not mention whether you live in a large community with a lot of resources or in a small community with close relationships. Earlier this year, I wrote, “Finding Caregiver Support“. You may find it helpful.
You might also talk with your mom’s physician about the position you are in and ask her or him for information about local MS support groups or other resources that may be available to you. Most communities have a network of individuals who go out of their way to help others. Making contact with a group or individual like this may be the beginning of a solution.
Hi Pam,
I understand what you’re going through, and I am sorry for your struggles. I care for my 41-year-old brother, who has primary progressive MS. It’s no joke that you are your husband’s personal assistant: You ARE his personal assistant. And being a personal assistant is a very tough role, especially when you also play another role such as spouse, sister, mother, daughter, son, etc.
I feel many of the ways you feel at times. It’s tough to feel alone and I also hate who I’ve become at times. I just wanted you to know you’re not alone. I’m on the sidelines cheering you on. We are both struggling with a very challenging situation. I wish you the strength and determination you need to make it through.
Meg,
Thanks so much for your message. You are right. It does help to know I’m not alone. Thanks for taking the time to send a kind note. I’m here for you too. Best to you also w/strength and determination. What med does your brother take for primary progressive MS. They are in process of testing my hubby to see if he can take Tysabri. He’s gotten weaker, etc. and they think this may be better then the current RX he is on.
Keep smiling! I found that when I do that & stay positive, it makes me feel good about me.
HI Pam,
My brother has been on Copaxone for about 2 1/2 years. He tried Avonex, Betaseron, and Rebif and found he couldn’t tolerate an interferon. He does seem to be doing okay with Copaxone; I think things would progress faster without it.
Like your husband, my brother has also gotten weaker. He’s wheelchair-bound and has a permanent catheter; he’s lost use of his legs and most use of his right hand/arm. I worry lately about his loss of appetite. We (my husband and four kids) try to encourage him to eat and drink, but he doesn’t get all the calories or nutrition he needs. He’s 6’4″” and very thin. He’s lost some cognitive functioning and I think he forgets to eat and drink, so even if food is in front of him, I need to remind him to eat. He’s prone to UTIs when he doesn’t drink as much as he should, and the UTIs knock him down; often, he ends up in the hospital as a result, so we try to avoid those as much as possible.
I’d like to know how your husband does with Tysabri. I hope it is a good fit for him.
Even though I tell myself to stay positive, it helps when I hear encouragement from someone else :-) Thank you for your kind words, too. Like many caretakers, I discover I’ve let myself slip too much, so I’m trying to get back on track with my diet and exercise.
Are you your husband’s sole caretaker? I care for my brother half time (nights and weekends), but he has someone else help him during the day when I’m at work. The extra help helps a lot. My husband and three sons (I have four sons, but one is away at college) are also a big help.
We live in a rural, remote area, but I hope to start an MS support group soon. Are you involved in any kind of support group?
Warm regards,
Meg
I’m supposed to be starting law school next fall, but my moms ms has taken a turn for the worse. We’ve been in and out of the ER for the last 3 weeks trying to get to the bottom of this new pain and its not working. I’m so mad at her for not having a neurologist and spending the last 3 years pretending that nothing is wrong. I’m afraid that i wont be able to go back to school. I feel inadequate b/c I can’t figure out how to make this better. The family has decided not to help me and i’m totally on my own with this. I don’t know what to do…
HI Adrienne,
I’m so sorrry for what you and your family are going through. This MS stuff stinnks, to say the least. I’m sitting in a hospital room with my brother right now . . . we know most of the hospital staff by first name, we’ve been here so much the past four months. Yikes!
MS is so unpredictable. It is difficult to plan anything, let alone law school. That being said, we have to make plans and move ahead. I finished grad school while caring for my brother. At times, it seemed impossible. I also was working and caring for my own children at the time.But if I could change anything at all during that period, or any time since I’ve been caring for my brother, it would be my getting mad at him. What I’ve learned from caring for my brother is tolerance and compassion. Rather, it’s what I’m trying to learn. :-)
I hope you’re able to work toward your goals, refrain from being mad at your mom, and realize that there is no “being adequate” when it comes to MS; there is only “being there.” It sounds as if you are there for your mom–through good and bad–and in the end, when all is said and done–law school or no law school–that’s what’s important.
Hang in there, Adrienne! I’m cheering from the sidelines–! :-)
Hello. My Name is Bill.My wife has had ms for 15 yrs. she is in the 2ndary progressive stage. She is numb from the waste down and needs walkers in the house and wheelchair when we go out. We have chairlifts and handicap rails in the house. I am 45 and my wife is 41. As ther years went on we did not let the disese affect our marriage. we adapted as the ms changed and rolled with it as it got worse. We are still very close and I love her as much today as i did 20 yrs ago when we got married. Does anyone have any advice on how to deal with sexual dysfunction that this brings. Sex between us not possible without her being inpain or discomfort,which i dont want for her,she has it hard enough. Any ideas, or help? Thanks
Hi Bill,
It sounds as if you and your wife have a wonderful relationship. You are fortunate to have each other.
Here is a link to a .pdf from the National MS Society that you may find helpful: http://www.nationalmssociety.org/download.aspx?id=1055
Best wishes to you and your wife.
Meg
My husband was just diagnosed with MS and I can really relate to what Pam wrote. It worries me that I am already so frustrated with the role of caregiver when we have only just begun. I’m thankful for sites like these. It helps to know that others feel the way I feel and are going through the things that I am going through/will go through.
[…] I’m an MS Caregiver […]
What a gift to find this site! My husband has primary progressive MS and has failed interferon and Copaxone. Or ratther, they eventually failed him. It just seems that as his disease progresses and we should be drawing closer as a couple to join forces through this, the less we are sharing emotionally. I understand his need to maintain dignity and independence for as long as possible but the all for one and all for him atmosphere can be overwhelming at times. I wish more information had been provided regarding the potential personality changes that can go with MS. To see his attitude go from a glass of life that is half full to half empty is difficult to deal with.
And he was only diagnosed 9 years ago. .
your not alone my wife got diagnosed about 9 yrs. ago she is also secondary progressive. i run my own rental business plus i’m a caregiver for my wife. we don’t have a ramp on our house because there is no place to put it so if we have to go out i carry my wife from the kitchen to the car i will never have to join a gym. she had steroids for 7 yrs. and now she is on a new oral drug. the steroids were evil. don’t think you are ever alone.
Dear Charlotte,
these words could come from me. My hubby was diagnosed in 2004 with PPMS and every day I can see a little change. His right leg is the worst but now his hand, hip and left leg starting to feel numb, and his pain is 24/7. His Neuro told him that copaxon etc won’t help any longer for him. Only tysbari or something but it had to many bad side effects incl death.
We have no children and our families are in Germany and his in Wisconsin, Washignton State, so we fight it together. He still works from home which is a blessing and i’m so glad they allow it.
I wish there would be more written about PPMS in all the newsletter you read only about MS, but PPMS I feel is very important to ME and i like to know how others deal with it.
Glad I found your messge.
i was wrong he was diagnosed in April 2008 so not to long ago, but since that one year a lot of changes have come towards us.
I’m glad I found all these people that feel the same as me.
I’m wondering how many of you and/or your significant others attend a support group. If so, do you find it helpful?
I have talked my husband into going next month and I am very hopeful about the experience.
Hi Meghan, Meg, Kelli, and all,
Sorry I have not been on blog in a while. I hope you are all enjoying wonderful holidays & I pray for a happy & blessed 2011 for you & your family.
My hubby started Tysabri and he said he felt more energy, however, when he felt that his brain said one thing and his legs another. He felt more pep, but fell down stairs. He was OK, just a lot of bruises. I’m surprised he even told me. He has been getting more short fused. Unfortunately, you know the saying, ” You hurt the ones you love.” It’s so frustrating, but I’m so glad I have all of you with all your support, understanding, and experience.
The hubby gets frustrated because I start doing things for him when I notice him having difficulty. One minute it would be OK and the next he would bark at me. I decided to start asking if he’d like me to do something before I do it, ie. pour him coffee, or anything. This way, he makes the decision and I may even get a thank you sometimes. Not that I need thank you’s however, being barked orders isn’t so nice either. I understand everyone’s frustration. I just wish we lived closer. I’m near Chicago, anyone else? Sending hugs & support to keep you strong and remember you are not alone. I am so thankful that we all found this site & also thankful for all of you & your opinions & feedback!
Regarding the support groups, we have none in our city that cover MS caregivers. Only ALS, MDA, Altzheimers, etc. The one that comes closest is a general support group for both the careceivers and givers. Somehow, I would like a forum where one could speak freely.
To Sylvia, I share all your points. Our children live out of state also. I too wish more focus was on this form of MS. Even though the percentage of patients is small, when one is dealing wiith someone in that percentage, it becomes HUGE.
Has your husband spoken with his neurologist regarding his pain? There are so many options for control now. It is recognized as a major a quality of life issue and while he may not be pain free, he could at least be more comfortable. My husband has this problem as well but takes Gabapentin to keep it under control.
May all of have a great New Year.
My husband was diagnosed in the summer of 08 with relapsing remitting MS. Now almost 3 years into it he now has “secondary progressive MS”. He has never returned to his baseline since he was diagnosed. We have been married almost 7 years and have a 4 year old and a 14 month old. I was wondering if anyone has young children. I pretty much do everything for the kids..and it makes me nervous for him to drive or carry the kids around…he is pretty unsteady on his feet. I am just having a difficult time thinking about our future, our kids future and how MS will change our lives…since it already has. We have a great marriage. Very open, but, I have to admit there are things like this I don’t want to talk to him about… he feels guilty for “having MS and putting us through this”. I haven’t met anyone with young children and has a husband with MS.
I have 3 kids ages 15, 9, and 14 months…My husband was diagnosed less than a month ago.
He hasnt been able to walk or feel his left leg since August 2010.
I completely understand where you are coming from. :(
Amber
My wife has had ms since 1990. We have 3 children (11, 15 and 18). My wife’s condition has worsened over time. She is still able to walk most ofthe time without a cane and is still able to work part time.
My best advice is to build a support network with friends, family and/or counselors. Your husband needs you to be at your best. I have made every effort to avoid tipping/trigger points. When you are able to take a few minutes to yourself, take advantage of these opportunities. It might be reading a book for a few minutes, working out or enjoying a cup of coffee.
Even though it is difficult on your children, the opportunity exists for your childeren to be more understanding of others that may have illnesses andor limitations.
Over time, my wife’s personality has changed with the long term use of medicines and her worsening health condition due to ms. Even with everything, I have felt very fortunate to be able to raise a family and work through the issues that come with ms.
My best advice is to enjoy the good times with your family and to minimize the lows that come with ms.
My husband was diagnosed with MS in September of 2010 and I have two young children one is 3 and the other is 11. I know how hard this can be for a family with young children. There are times when i dont think that i can go one but i dont want to leave him alone. I do love my husband very much but his mood swings and his temper is crazy to me and to the kids. he always has this feeling like we do things on purpose to upset him and it is never the case, actually everyone (except the 3 year old) walks around scared to laugh to play or to talk half the time because we dont know what mood he is going to be in and then he doesnt work and i do so that in itself is exhausting. He stays home with the 3 year old during the day and i feel bad because by he time i get home from work i am exhausted. I am just tired of being told i am not a good wife and mother when everything i do is for them. But if i take time for myself or do something for myself it is a problem. I dont know much about MS and neither does he, but our marriage is holding on for dear life because it may sound selfish but i dont know how much more of this i can take or have my kids go through. I feel bad saying that so bad, but its the truth.
i know your post is over a year old but i just discovered this site. i completely understand where you are in life. my husband has MS and we have a 7 yr old and 4 yr old. he hates that he is “putting us through this” as well. i look around me and no one has these worries that i have and it makes me feel very isolated. he has not been able to walk around while carrying our children for the last 4 years. he is now using a walker and scooter. i want to protect my children from leading a “different” life than everyone else but it is so hard :(
p.s. if you ever need to exchange experiences or vent, i am at sheebapeter@hotmail.com :)
@Pam-I understand what you are going through. My husband has MS-diagnosed 1991. We’ve been married almost 18 years. While we’ve tried to roll with all the changes MS has brought-he started out walking with cane, then walker, then wheelchair, now power chair, incontinence, double vision, loss of work, loss of self-esteem, etc. I’ve learned I have to fight for my boundaries, and that it’s OK to say “I need time for myself”. My husband also has an emotional component to his MS and so I try not to take it personally when he lashes out, realizing that it’s probably the emotional MS talking. Don’t be afraid to be bold with your spouse and set your boundaries. Yes, you are his caregiver, but you are also a feeling, loving human being worthy of love and attention. Your relationship may even benefit from frank, honest and open discussion.
Our marriage is better because I’ve gotten better at setting limits and asking for help when needed. I try to do something for myself everyday (guitar practice) every week-some girl time, and every year at least once a week or longer caregiver break without my spouse. It really does help me to remember that I do have a life outside MS and caregiving. Hope that helps.
Cathy,
Had I had that kind of confidence in myself, I believe my 22+ years of marriage to my husband with MS would have been saved! I simply couldn’t handle his passive aggressive emotional abuse although I loved him dearly. I more or less “ran away”. Now 12 years later, we are together again, after he got back into the church and it allowed him to learn better ways to communicate without being abusive. I don’t think he even realized how his actions hurt me then, but we work daily to be open and honest about everything. Now, although there are times he snaps at me (and who doesn’t when they don’t feel well), I try not to take it personally, but I also have my limits that he is well aware of.
My biggest problem now is that he has severe incontinence. By the time he gets to the bathroom using a walker, it is too late. This affects us being able to go anywhere without his wetting himself in public. He will wear protection, but it is never enough. Once in a restaurant, he came out of the bathroom soaked and still wanted to eat there. When I offered to just get food and we could eat it at home, he asked “who is embarrassed more, you or me?” And I replied “obviously me!” I simply couldn’t stand anyone to see him like that, and honestly it just isn’t sanitary to be like that any longer than necessary. I am at loss how to deal with this, but I guess we will have to wait until he decides to do something about it so we can enjoy going out while he is still able. Any suggestions anyone might have will certainly be appreciated!
Cathy,
Thanks so much for your words of wisdom. You are so right. I didn’t get too bold for a long time. I do feel better when I occasionally “wake him up” a bit with being bold when he lashes out. I know you are right & I do need to do more for me. This year, we will also be married for 18 yrs also. Where do you live? I’m in Chicago.
Everyone posting here…
Wow am I happy to get to know all of you through your posts. I live in Europe, but come from Minnesota. My husband and I have been married 26 years and lived with the MS diagnose for at least 21 of those years.
I can no longer care for my husband, it’s just gotten too heavy. I’d work fulltime and then come home and take care of him. It worked for a while, but now he can’t do anything for himself. His spasms are so intense that he can’t feed himself. We have lifts to move him in and out of his wheelchair. He has a permanent catheter. Since right before Christmas, we have 24 hour assistant care in our home, which in itself is not easy, especially for our two teenagers.
I recognize so much of what everyone has written here. We have no support group in our community for MS caregivers. We did at one time go to a support group for MS, but my husband stopped wanting to go. I feel he didn’t want to see what was coming (which has now arrived.)
To be honest, it was always my intent to take care of my husband until the very end and many of you write here that you want to be there until the last. But quite honestly… when is it enough? When is the point where we have to recognize we have done all we can?
I was so intent on taking care of my husband, and keeping my family together that I didn’t see how much my children were in pain from the situation. I didn’t see how much they were suffering. I’m just throwing this out there to see what you’all think… Because I have some very difficult decisions to make in the very near future. They might be decisions you’ll have to make or are making now too.
So I ask you one more time… When is the point where we have to recognize we have done all we can?
Thanks again for this blog and all your posts!!!!
Hi, I read your post. My husband (or should I say partner since we are not married but have been together 10 years) found out 2/2010 that he has MS. He is going down fast and is taking Copaxone shots
I hate to think how bad he would be if he was not taking the shots. He looses his insurance in a month, I do not know if anyone with be give him insurance with MS (pre existing)
This week end he had a terrible time, could not walk, he fell on the floor, I had to get friends to come over and pick him up off the floor and get him onto bed. I gave him something to urinate in, however he was not fast enough, luckily there is good protection on the bed, water resistant ect. I was wondering the same thing you are, I do not know how much longer before I can not take care of him anymore. I was not able to go to work for 3 days. I work for myself cleaning houses as trying to keep a regular job is just impossible. My customers are understanding thank goodness. I do not know what to expect next, will he be like this for a while or will he get worse fast? If he stays like this for a while I can probably cope as the episodes are about once or twice a month. If it is not urine trouble it is bowel trouble but thank goodness it has not been at the same time, but either one is usually with not being able to walk or get up after falling. I am beside myself, can you please tell me what to expect?
Has your husband been that bad for the 21 years? How fast did it progress until it got really bad?
I am so thankful for this website as I am relieved that there is someone else out there that knows what I am going through. We were suppose to get married however that is out the window now, all we have been able to do is take it day by day as we do not know when a episode is coming.
My name is Becky I live in Washington State, in the Pacific North West and they say that we have the highest rate of MS in the country. I do not understand why.
Please reply,
thanks Becky
Hi Becky, my reply to you ended up down the thread. :) and I thought I was Internet savvy. <3
My husband and I went to a support group last week. It ended up being a fairly positive experience. All of the members were much older than us but were very friendly. It was comforting to be in the same room with a group of people that understand EXACTLY what we are going through. I’m not sure if my husband will go back again. He has the attitude “been there done that.” But I will probably attend another session sometime soon.
The big change we faced last week is that my husband began taking Rebif. So far he has had few to none symptoms. Some night sweats and slight reactions at the injection site are pretty much it. Hopefully it works! I am very proud of how easily he learned to inject himself and how he does it 3x a week without a complaint. Not sure that I could do the same!
Thank you everyone for continuing this thread! It is such a relief to have a place to go when things get rough.
By the way, I am in the San Francisco Bay Area.
Hi Becky,
MS is a very complicated decease and from what I understand there are many different types. Your partner sounds like he has a very aggressive form. I’m sorry, but I don’t think anyone can tell you exactly what to expect. I’ve never seen two people have the same experience with MS.
My husband’s MS has progressed very slowly in the past 20 years. It was perhaps 10 years ago he needed a cane, then a little later… crutches, and then a walker. Two years ago he experienced what you’re describing falling and the bowel trouble. I know exactly what you’re going through. Sweden has excellent home care, but this happened in the middle of the Summer when the country pretty much shuts down. I couldn’t get him into a doctor, because his doctor was on vacation. The Swedish gov’t provides help in the home, but I needed the doctor to order it. So I had to take off work to take care of him for quite a few weeks.
You’re going to need help, Becky!!! You’ll need to find out you and your partners options.
Will your partner allow you to come with to his doctor visits so that you can get your questions answered? My husband’s doctors have been very good about letting me talk them privately without my husband hearing… mostly because I need to hear the bad news and he doesn’t want to know. I’m sure this is touchy in your situation, but perhaps if your partner gives his consent. Actually my husband had to give his anyway, even though I am his wife.
I haven’t lived in the states for 15 years, so I’m puzzled to why your partner’s insurance is running out when they discovered the MS while he was covered by it. He should get some sort of assistance shouldn’t he?
Okay, this is perhaps neither here nor there. But you’re going to need help, I’d start looking into what you’re options are. Your partner’s doctor is probably the first place to start. I’m sure the situation is very scary for both of you so I hope you find the information and help you need. Please talk to your partner about different scenarios of what might happen and what you’ll need to do. I didn’t talk to my husband and now he isn’t in a mental frame of mind to be able to help me with those decisions. Many of our family and friends are asking me why we never discussed it and I don’t have a good answer other than maybe the MS would just go away if we didn’t discuss it. Not a good way to handle it, I know now and should have known then.
Does anyone else out there have experience with Washington State and can help Becky with some info?
I hope I’ve helped and please keep me posted!!!!
/Linda
@ Pam, Charlotte & Cathy,
I, too, am a caregiver. My beau/partner of two yrs has Relapsing-Remitting MS. He was diagnosed 11 yrs ago, but only started experiencing any debilitating symptoms until last summer (2010). As you all know, it is awful to watch the one you love go through such tremendous strain both physically and emotionally. I’ve witnessed the cycle many times now; flare up, frustration, anger, withdrawing, and then back to a calm, level field. It is very unsettling to see my partner go from a whole appreciation of life to Mr. NEGATIVE. It seems there is no way to “reach” him when he is in this stage. Anything I say or do only exacerbates it.
I am having difficulty with being a supportive, patient caregiver and partner and at the same time asserting myself and communicating my needs – a mere hug will usually do the trick for me!
Has anyone been to couples counseling for MS patients and their partners/families?
Thanks for any info – I am grateful to have found this blog/site!
Peace,
Meg
Hey Meg, Sorry if I’m butting in with my two cents, but I think you’re doing the right thing in finding counseling. I find myself wondering if it wouldn’t have been better for us today if I had insisted then that we needed it. I remember bringing it up to my husband, maybe five years ago but he wouldn’t have anything to do with it.
When talking to other people who have experience with MS patients, there seems to be an underlying theme that it’s difficult for MS patients to express their love and gratitude for what the partner/caregiver is doing and going through themselves. Sometimes that hug, squeeze of the hand, the look right in the eyes with a thank you…is all we need.
My husband has actually said to me “What are you whining about? You can get up and walk away I can’t. Why should I be expected to be “nice”.” This was his retort after he demanded that I do something and I reminded him he still had to be respectful and “nice” to me.
I’m actually in the process now of getting family therapy. it’s through Neurology clinic at the hospital here where we live. The therapist is suppose to specialize in MS patients and their families. I wish I would have known about them sooner. It’s most likely much too late for, my husband who is I guess you could call the final stages as I wrote up the thread. He’s going more and more into his happy place and is less and less with us.
I’ve contacted them for our family now, because my daughter isn’t doing well dealing with her father’s illness and having 24 hour care in our homes (Which is a blessing for me!) I feel I need someone to help me deal with the future decisions I have to face. Perhaps the therapist can also help get my husband to come out of his bubble. Don’t know what to hope for…
Okay long reply to I hope it goes well for you and your partner and definitely find some counseling!
/Linda
Linda,
I applaud you. I know how hard it must be for what you & your family are going through. I am not quite to that physical level yet with my hubby, but a could be in years to come. I am however dealing with those emotions. You are right, even if our partners who have MS don’t want counseling, we, as caregivers do. Its so hard when they are so difficult. I don’t get why the ones affected are so closed to seeking counseling. You are right, it is difficult for the person with MS to be nice. It is hard on us caregivers and the kids. My kids are resenting my hubby and don’t always want to be around him because he isn’t so nice all the time. My boys don’t want to go to counseling. They are teenagers. I’ve started working out so I hope to get back to liking me. I am interested in hearing more about personality changes that happens with MS also. Good luck to you & your family Linda!
Meg,
Sorry to hear about your beau! Unfortunately, the negativity is him just being depressed. You need to tell him what you need. You are there for him and he needs to get a little reality check. My husband is the same way. All I want is a hug, my hand held, SOMETHING. I would just keep it inside, but he didn’t know how I felt. I realized that if he would even go to couples counseling (which he wouldn’t), I think they would tell us to communicate. I know we walk on egg shells around our MS partners. Maybe start by saying how much you care about him & love being there for him (don’t say helping, oy, my hubby hates to hear that word). Anyway, after you say that, in a kind tone explain that all you need or want is a hug.Explain how he hurts you or that it’s hard to hear him so negative, etc. I hope that helps. I wish you the best of luck. Hang in there. Yes, this site is great for us caregivers.
Hang in there,
Pam
I am a caretaker of a 69 year young lady. But I have a problem. I cannot convince her that she needs to lose weight (300 lbs) and she needs to do some leg and arm exerciseing. She is so over weight that her legs have almost given out and she has recently started to use a mobil device.She was diagnosed in 1985 and has been active up until about a year ago. Every time I try to talk to her she starts yelling. She says that I am not a doctor and don’t know what I am talking about. She was last seen by a specialist abot 20 years ago. According to her nothing new has come on the scene so why bother. What am I supposed to do.
Hi Don,
I’d personally like to see some research done on the personality changes that happens with MS. Why is it that people who have taken care of themselves before suddenly decide they don’t want to. I also had problems convincing my husband he needed to do his therapy. Now, he isn’t able to. It broke my heart because he was always so careful about his weight and how he looked in the past. When he stopped caring about how he looked, I guess it was then I knew I lost the man I married.
The simple truth is in the future it’s going to be harder and harder for your young lady to get around and she’s going to need assistance. That will be more than difficult if not impossible if she weighs 300 lbs. As in Meg’s case above in the thread perhaps some outside help is needed. I didn’t insist with my husband and I feel we’re suffering for it today. Since the young lady hasn’t been to the specialist in 20 years it’s about time. You can’t be there to take care of her if she doesn’t do everything she can to take care of herself. No, you’re not a doctor, which is why you want her to go in and see one.
Perhaps this is of no help at all, but at the very least know this. I know exactly what you’re going through.
Hugs, Linda
@ Pam and Linda:
Thank you for your support and encouragement! It really is so comforting to know I’m not alone.
To know that others experience and endure the same issues Martin and I are helps more than I thought!
Pam, great advice with the approach and the gentle words to use.
This rollercoaster is nearly unbearable. I am not only walking on eggshells but living in a glass house.
Best of luck to you and your loved ones and families.
May you enjoy a few moments of beauty and peace each day,
Meg
There are a lot of comments here on personality changes iin our loved ones with MS. Like those I see, I wish I could have headed off some of the ones in my husband, negative, paranoid, self oriented…Then nice and considerate again. LIfe on a bungee cord. I spoke to his neurologist regarding these. Maybe we should make a point of letting all the respective physicians know of this and insist on more support. It is no coincidence that they take their specialty exam through the Board of Neurology and Psychiatry:)
Great point to keep our loved ones’ physicians in the loop with respect to personality changes, behavior changes.
Stay well Charlotte!
Meg
I agree with Charolotte – In my experience personality change doesn’t happen to everyone that has MS. The disease is so complicated. Changes in personality seems to be as random as the other symptoms that plague MS patients. My husband had periods of just being cruel years ago, but at that time the experts insisted there was no connection and instead was a result of depression due to the MS. Since the topic has now come up here I started googling again and found, perhaps not a lot, but some material on the subject. It seems the medical community is now beginning to recognize this problem and is finally looking at it. I feel the information should get out there to caregivers so they realize what they are dealing with.
Too often you hear of a spouse or partner leaving (with the children) and everyone thinks …How awful! “How could she take their two children and just leave him like?” Of course the person that left is seen as the “bad guy”. Perhaps it was the bravest thing that she ever did. Perhaps leaving the man she loves to save her children from the verbal abuse that they get from their father or saving her children from witnessing the verbal and perhaps physical abuse that she herself receives.
I’m not saying the answer is leaving, perhaps just knowledge will give the caregiver the necessary tools to deal with the problem in a positive way. However, too often the focus is on the person who has MS and the family is over looked. It isn’t only the individual that suffers from MS, it’s the whole family that suffers.
…stepping off my soap box.
Thanks. Linda has hit the nail squarely. The focus on the carereceiver vs the giver is logical but overwhelming and needs more balance. All we have to do is add up the list of things we do to make their lives easier and it becomes clear. But try explaining that to those on the outside of this struggle.
I just found this site and have never written before. Here goes. My husband and I separated 11 yrs. ago which was 5 after his diagnosis. He returned because he would’ve been homeless otherwise. We do not live as husband and wife, but we’re “family”. I need help for myself dealing with the anger and hatred I am feeling recently. He chose to NOT treat the MS. Doesn’t see doctors. Won’t leave the house. Could not care less how his decisions affect anyone outside of himself. We have 5 grown children that do not understand how an Olympic qualified gymnast, 4th degree black belt, retired Marine simply gives up and lets his physical body defeat him. They don’t visit. Where’s his fight? He just sits in his chair, is delivered his food and drink; his diapers are changed; the TV remote within reach. He doesn’t want a power scooter or hospital bed; complains about the lymphedema compression boots and anything and everything else that could improve his existence. He wants to waste away and die while we watch. I hate my life. I hate being around him so I spend most of my time at home in my room. Depression meds have not helped me. The sound of his voice is enough to make my blood boil because I know he just wants something else. The house is too cold, the lights are too dim, the sandwich isn’t cut the way he wants it. I just want to scream at him that he chose this existence, not me. I recently graduated from nursing school at the age of 54 and work in Long Term care. Although the staff may be excellent and caring, there are too few of them to give quality care and the “for profit” companies only provide what costs them the least. It would be a last resort. I am trapped in hell. Someone must know what I’m feeling, please talk me down.
Carmella,
Thank you for sharing your experience as a caregiver. It’s not always easy to do that, but I think you will find people here who have been where you are and who can offer their online support.
You are living in a stressful situation, and while it sounds like you feel as if you have no control, there really are things you can do to get some relief. You cannot do this alone and you know you need assistance in a couple of ways. You mention caregiving, graduating from nursing school, and working in LTC. It’s obvious that you’re strong. And you’re tired. You must ask for help. Strong as you are, you cannot do it alone.
You say he doesn’t see doctors. Did he ever see a neurologist who specializes in Multiple Sclerosis? In your work at the LTC facility, is there a social worker whom you trust enough to share your situation? I ask because social workers will often know about support resources in a community that can be helpful. There may be intensive home-based services available to help you. Is there a person, a minister, a trusted friend, a member of an MS Support Group you can call when you feel overwhelmed? A local hospital’s social services department may be a good resource for you, too. If it’s isn’t listed in the phone book as a department of the hospital, simply ask the switchboard operator for the social services department.
Carmella, there are also excellent resources available at the National Family Caregivers Association at http://www.thefamilycaregiver.org/caregiving_resources/
Another good resource is http://www.familycaregiving101.org/
You can do this, Carmella, but you cannot do it without support during the times when the burden is great. Seeking and asking for help, like you have done by finding this blog and posting a comment about your situation, is a great step in a good direction!
Oh Carmella,
I am so sorry to hear about your Ex husband’s decision to give in. Unbelievable that he was so much more active then most people with all of his achievements. Of course we all know in general in life we need to keep moving, and especially with M.S. so our muscles don’t forget what to do, Ok, one thing us caregivers are all guilty of is not taking care of ourselves. So, besides work, you need to find something for you. Since I didn’t make time for me, I, unfortunately, gained 50 lbs. So, I just started working out again. It helps with the stress, anger, etc. I totally understand retreating to a room, but that’s no life for you. I am on depression meds also, That extra endorphins from working out really help, but I understand the meds not working alone.
Others may disagree, but I know I felt a lot of anger towards my husband since I did everything for him. Mine can still walk with difficulty & won’t consider a scooter either when it affects our teenage boys & wanting to go somewhere. I finally felt I had to say something or go crazy. Ask your Ex, what if you had the M.S., what would be happening? It’s nice to assist him, but you have to get out too. I had the same problem, but you will not be happy emotional, spiritually, mentally, until you do something for you. I wanted you to know you are not alone. This is a wonderful website. We are here for you. So, where do you live? Hang in there. Sending Hugs.
Hey Carmella!
I know what you’re going through. I’ve seen your Hell. Your post has reminded me that I am on the other side of the darkest deepest Hell and I can see a light-
I am fortunate to live in a country that will provide around the clock care once needed and once you ask for it. Like your husband, mine refused any type of help and he didn’t understand, or perhaps chose not to see, what he was doing to me and the rest of the family.
I can relate to so much! Your husbands personality seems to be the same as mine. Super fit and active and cared so much about how he looked before. Now he sits in a chair in front of the TV and refuses to go out, refuses to see anyone. Also your reaction of hiding in your room, hating when he yelled for something. Being angry with him for not seeing what he was doing to me and the rest of the family. Not because of his MS, but because of his attitude and how he was treating me and the children.
I did realize something finally, that made me feel empowered, that I want to share with you. I started making decisions for him. He had no choice, what was he going to do if he didn’t like it? Leave me? First I got people in to help me for a few hours… I increased the hours… I started to leave the house over night once in a while. Then a weekend here and there. Then I went home to visit my family . (Which was absolute heaven!)
He now has 24 hour care, but I and my children have had to get used to having others in our home. It’s been especially tough on my teenage daughter. She feels she has lost her privacy. Despite this I no longer have to jump when he yells. I no longer have to be up until midnight with him, because he’s in the bathroom and then try to wake up at 5 am to go to work. I wish I could say we are more of a family again, but he’s in his own world and really doesn’t give anything back. He doesn’t ask me or the kids how our day was.
So what am I trying to say .is you actually hold the power, not him. Follow the advice that Rick has given you and find out how you can get more help. There must be more help out there. Your husband doesn’t get an ultimatum this is the way it is. You can’t have a job outside the home and take care of him to the extent you have been.
Which brings me again to my point earlier on this thread. When is everything we do enough? When can we say we’ve done everything we can and forgive ourselves that we can’t do anymore? When is the last resort you wrote of? Carmella! Your life means something too! Your health, your sanity, your worth here on Earth means something.
Also sending hugs!
/Linda
Carmella………how are thngs going for you now?
AMEN LINDA! YOUR ARE SO RIGHT! I LOVE WHAT YOU WROTE: Your life means something too! Your health, your sanity, your worth here on Earth means something.
I live in Pennsylvania and my spouse is a Vietnam vet. Tackling the red tape of getting benefits is a huge hurdle for me. Paperwork I can’t find; important forms to be filled in needing info reaching back into the last century; contacting gov’t offices to get copies of records has all been too overwhelming for me. It’s miserable, time consuming work that I have put off because I just can’t do another thing. But venting on this site has eased my tensions, the replies are kind and non-judgemental I already feel I can do a little more towards making changes for me. I’m so glad the suggestions are simple, not someone saying build a ramp, get a van, remodel the home. Baby steps can get a thing done too. Do any of you mourn the life you thought you’d have? Without MS I might’ve had someone to sit on the porch with, take the dog for walks with, cuddle beside in bed with, Christmas shop for the grandkids with. This really, really bites. The saying about life giving us lemons and our making lemonade hardly applies. Whinning is so not how I used to be, but my optimism made a break for it years ago.
Here again I can relate Carmella! Since I live in Europe, I’ve had to deal with this stuff in another language. I have so much paper work I should fill out, I could apply for money here and there to help pay for the extras we need around here but …yeah… you get so tired. Hey… I bet there is someone out there that can help you with the forms too! I’m sure there are volunteers out there that just live for helping people like us fill out forms! Now there’s a thought!
The part about missing and mourning the life that was intended … oh yeah… I think we all do. I think Rick writes about it very eloquently here in his blog too. I feel it alot now when I see the neighbors out in the yard working, talking and laughing together. I see them having dinner parties… we haven’t had friends over in years! And when I do stuff with the kids and he should be there too.
And yes… the bed is a very lonely place… my dog has had sleeping rights at the foot of my bed for the past 4 years :) When I wake up at 3 am and can’t sleep, it’s sure nice to hear her breathing and snoring. :)
Baby steps Carmella, baby steps.
Hugs, Linda
Carmellla, I share your situation. Dealing with VA red tape is the worst. HOWEVER, at the end, the Spinal Cord Injury clinic here and everyone connected to it via the VA Hub and Spoke siystem made it all worth while. We have consistentsy in care, his DME needs are covered and the two of us can breathe a little. Still, it would be nice to have one, just one day of it all back to normal to savor….
I am new to this site and very great full that I
came across it. My husband was diagnosed with MS three months ago. I felt like such a strong rock but am now starting to feel like I am falling apart. He started Rebif which makes him feel like he has the the flu all of the time. His temperament has changed and much like I read from above it’s like walking on egg shells 24 seven. I wish there was more I could do but I don’t know what. We have two young children I try to keep everything as sane around the house as I can while working full time as a teacher. This week I have just seemed to loose it myself can’t stop crying I just feel totally alone. I’m glad to know that I’m not the only one out there going through this. Not that I wish anyone has to go through ever I hate this disease. Then I feel guilty talking about myself because I’m not the one with the disease. Thanks for listening and keep fighting for that cure!
Hi Amy,
First, you are NOT alone! I am sorry for your husband’s recent diagnosis.
It is exhausting to take care of everything, everyone while adjusting to the new life brought on by MS. This site is a wonderful resource and I am glad you found it!
My partner Martin has MS and while he’s had it for over a decade, only recently started experiencing symptoms last year. I am enduring the roller coaster ride of his emotions, my capacity to give and the painful uncertainty this disease presents our lives with.
My advice is to continue to seek help when you feel overburdened. Be it ask for childcare help, talk to friends, family, write. Take care of yourself, for if you are not well then you can’t take good care of others. Also, the painful part for me is to communicate your feelings, your pain and sadness with your partner/husband. It is not easy and I, too, feel guilty even being frustrated and sensitive when I am not the one with the disease. BUT, I am sharing Martin’s life.
And, as was reinforced from other MS caregivers on this site – I MATTER.
Counseling is also an option. There is a lot that you and your husband – your entire family are going through right now. Perhaps counseling would help to create a foundation for communicating, sharing, and dealing with this disease as you move forward and your children grow.
Be good to yourself. YOU deserve it!
Peace,
Meg
Amy,
I couldn’t have said it better. I totally agree with what everything Meg said. We are all so lucky to have each other.
Try to have a good day,
Pam
I would just like to add… That it’s the family that suffers from MS not just the person who physically has it. We have to stop feeling guilty, because we are also suffering. I’ve talked to my husband many times about this. I don’t think he ever got it. He could never see outside of his own pain to see that his family was also suffering. He wasn’t… well isn’t alone in it.
/Linda
Thanks so much Meg! You are so right communication is such a huge part. It’s definitely not as easy as it used to be but we have to keep trying. My husband knows that often he is being irrational so I’m trying to just go with it. It’s amazing how some days you feel closer and some days you feel like your totally alone. Thanks for your kind words and I hope you and your husband are well. There is a song “True love travels on a gravel road.” I believe this pretty much sums it up but I am bound and determined to hold on tight!
Keep keeping on :)
Amy
Hi Iam Renee, Iam new to this site,My boyfriend has had ms for 10 years now.We have been togeather 4 3 years ,Iam not sure whats happening Yes I know hes getting worse hes now in a wheel chair,I feel so bad I cant do any thing 4 him hes moods are so up down,I try to be soportive of his needs but I we dont have any body out side the 2 of us,I care 4 him 24 7,.We need help home care problem is we hear sorry u have to many assits cant help u.Wow what a slap in the face he worked all his life and I myself have been a pca for 30 years,What do we do? We have no family that can help,friends walked away to maney missed appts. yes we would love to be able to meet for dinner last min no we will not be there,Iam used to that our friends just did not understand,can any one please tell us what to do , is there help out there.
I am also new to this site. My husband was diagnosed about a month ago with PPMS.
So far his left leg is completely numb and immobile and he is having vision problems and stays dizzy alot.
We have 3 kids ages 15 ,9, and 14 months….This whole situation is soooo scary.
Jennie,sorry to hear about your husband,and yes this whole sitution is very scary,I feel for you and your family.As you know this will not get better,the only advice I can give to you is look for help dont burn your self out trying to do everything,find a soport group for your self,talk to family and friends explain to them you need all the help you can get,now and down the road,unfortunally with ppms things only seem to get worse and just as you think thats over some thing else will come up.I thought I could take care greg all alone but even after 30 years of careing for outher people I have found out that Iam not super women.Greg has also lost the use of one leg one hand,one arm,his depresion is gotten worse,his speech,his thinking is off,his memory is worsening,most of this has come in the last 8 months,The hardest thing was to execpt the fact that this is our life now not just his but mine also,as Greg is now pretty much in a wheel cair,this with in the last 3 weeks I find that we are almost home bound.I tell u to get help now cuz u would be surprized how little help there is ,Iam talking as far as haveing help in the home,The MS web sites are very help full to me as far a learning about MS and some of the trements and places to look in to to help pay for some of the treaments.You are not alone thats one thing people are out there you just need to ask for help.With this all I can tell you is knolage is power learn about ppms,it helps to understand your husband and what he may going though.And its ok to be scared we all are at some leavel.You and your husband hang in there.You are in my prayers ,Hope For A Cure,keep fighting, Renee
Well said Renee! <3 Hugs to you Jennie. <3
It’s amazing how reading all of these posts is truly like reading my own thoughts. My husband was officially diagnosed last week and it was almost a relief. I’m not relieved that it’s MS but I am happy that we have an answer. Now we can research, make a plan and prepare ourselves. I am vey proud of my husband. He has become more positive over the past week and has decided to take better care of himself. He found a PT program, has been excercising and eating better. Linda, I totally agree with you about how the whole family suffers through MS. I have made the choice to not feel guilty when I become annoyed, frustrated or grumpy with the situation. Who wouldn’t?! I’ve also made the decision to be open and honest with others about what is going on in my life. I’m fortunate to have supportive family and friends who listen to my grumbling. Hang in there, everyone!
AAHHHHHHHHHHH! Just finished reading all the posts & what a relief to find this site. Being an MS caregiver is a long, unrewarding task. My husband was diagonised with Cronic Progressive MS in 1993 at the age of 48. He had to stop working in 95 do to the onset of bowel incontinence, difficulty driving, short term memory loss & tremors. Yes we did the Betaseron injections for about a year & he kept having MS attacks, so he threw all the meds & needles out the door. It has been a downhill battle all the way. At this point in time, he hasnt left our home in 3 years (onset of agoraphobia), refuses medical treatment & decided last July when he turned 65 to just confine himself to his bed (right after having a stair lift installed). It made me bitter, as though he just walked out of our marriage without any warning. I retired 2 1/2 yrs ago to be his full time caregiver which was probably a big mistake. :( Now we are at the point where I am on 24 hour call as he has a intercom at his bedside & he thinks nothing of buzzing it at any hour. MS sufferers are by far the neediest to be caregivers for. I cared for my mother at the age of 15 who was dying of cancer, raised my 2 lovely daughters, babysat for 2 granddaughters, but now when I look back that was all so easy compared to my present situation. Why don’t I get homecare in, you ask? Well, they probably would pack up and leave after one visit because of his rudeness & stubbornesss to except their care. I never thought that a quick jaunt to the grocery store would be something I would look forward too. :)
I am replying to my previous comment back on March 5. Well a lot has happened since then. As if MS isnt enough, my husband has recently had a mini stroke & suddenly started having severly low blood sugar attacks. Its a daily ritual of trying to combat the seizure, changing the soiled bedding and trying to get him to eat. Last week I hit rock bottom & just cried all day. So I made one very important phone call to our local Hospice center. Within 3 hours they sent out a staff member to do an assessment & paperwork. The next day a nurse showed up & checked out my husband & explained what help we qualified for . The next day, 4 people were here: a nurse, a social service person, a homecare aid & a spiritual advisor. The next day a hospital bed was delivered & set up. Let me tell you I cant find the words to say how overwhelmed I am with the response time & the comfort they are providing for both my husband & I. What an amazing & compassionate program . Yes, hospice is basically for end of life, but is also to comfort the patient & caregiver along the journey. They will also provide for a person to just come sit & stay for few hours so that the caregiver can go out to shop, have lunch, etc without worrry & hurry. I will continue posting from time to time giving updates!
Thank you so much ladies for letting me know i am not alone in this……It is so scary to come to terms that this is our life now! We are tryiing to stay positive but some days it is too hard. I found a great online chat group on MsWorld.org that has really been helpful.
Thanks, will check it out !
Checked it out! Very nice people. Wednesday nights is caregiver night.
/Linda
It is hard Jennie but you will be amazed at the strength you will find. I always say that this is are new normal now. I have trouble accepting that some days but we have to push through. It is so hard to stay positive all the time I agree and you know what it is ok for us to have our bad days too!
Hugs,
Amy
Everyone I have met there is GREAT a wealth of information.
On being a caregiver, one thing I recently have been working on, is finding time for me. Even if it is just going to a bingo, lunch with a friend or a short drive. Also just recently, when I am out in public & people ask how my husband is doing, which is often, I reply politely, ” all is about the same, thanks for asking” & if they encourage more conversation about his condition I just tell them I am out & about to relieve caregiver stress & I dont wish to talk about him. It all seems to be helping me cope a little better.
Very good point Bonnie! I find the time after my husband goes to bed and early in the morning before he wakes up a good “me” time as well. I love going to the grocery store and taking my time going up and down the isles, because it feels like a little bonus me time. It’s being able to find those moments in the day if you’re not able to go out. But I encourage everyone to find some way to get out and be with friends or just do something you enjoy. It really helps handle the everyday stress and as Bonnie says… cope!
I am an MS Caregiver to my 32 year old husband. He was first diagnosed when he was 17. We began dating when I was 19 and he was 21. Six months into the relationship, he trusted me enough to tell me about his MS. I didn’t know much about it at first other than Richard Pryor had it so I started to research it more and more so I guess you could say I have a pretty good clinical grasp of MS. We have been together for 11 years so far and married for 3 of those years. When my husband was diagnosed, his family really had no idea what was happening and his mom was the only one who went to his support group meetings with him. In fact, his father even told him that his MS would never worsen and he shouldn’t worry about ever needing stronger medication or even a wheelchair. Needless to say, 2 years ago, he had a major relapse and was hospitalized for over a month with intensive physical, occupational and speech therapy for over a year. Now, he has focal tremors in both arms, he becomes fatigued much faster, his short term memory is pretty much non-existent and his cognitive processes have been extremely affected. It has been an uphill battle ever since.
He started counseling but it has not helped AT ALL. His neurologist even put him on anti-depressants but my husband has had such a hard time adjusting to the physical/mental changes since his relapse. His employment contract with his company ended abruptly so he is having a hard time with that issue since it helped to give him confidence and his neurologist has told him that driving is out of the question. So we are on one income (I work full time) and all of his focus is on finding employment instead of his own health and well-being. I don’t mind that he doesn’t work but he puts so much pressure on himself that it is heartbreaking. Recently he has admitted to me that he is disappointed in the life we have and he is not happy at all. It hurt a lot to hear that as I have struggled for these three years to make a nice home out of our little apartment and have struggled to pay the bills, buy groceries, take him to the doctor, take him to the infusion sites, keep track of his medications, be his advocate with the insurance company and his Social Security case worker, etc, etc.
When I married him, I knew what was going to be involved and I have a slight idea of what the future holds but I never really saw it without his understanding as well. I never really saw my caregiving as a burden….until now. It has been very difficult this past year as our communication has broken down completely. He struggles so much with accepting that he can’t really work due to his cognitive functioning, that he can’t drive and that we do not own property (weird I know) and anything that I ever really say falls on deaf ears. It’s beyond frustrating coming home now to him when it is like this. It hurts me to say that! The rare occasions that I do go have dinner with my girlfriends, he gets so angry with me. His mom tries to help but his family makes no attempt to understand. They constantly criticize me and say that I am not doing enough for him and get this “that I have not made his MS stop” Yeah. I consider myself lucky enough though that he is mobile and does not require a walking aide yet and I count my blessings that his medication is pretty much effective and I try to understand what he is going through but it is hard. I probably sound like a horrible person but I really needed to get that out there. Thanks.
Tell his parents the next time they make negative remarks to you ” until you walk in my shoes, keep your thoughts to yourself “. You surely dont need the stress of them badgering you on top of everything else.
Lane,
Bonnie is totally right. You can’t let others get to you. We know they have no clue of all you do for your hubby. You did need to get that all off your chest. YOU ARE NOT A TERRIBLE PERSON! You are a wonderful person. I felt the same way you did. I went through feeling alone, crying, didn’t want to say anything to make him feel worse. Finally, I said something to him. Wow, it worked. I reminded him of all the things I do for him. He said, “I thought you said you did that because you cared!” I said, “I do, but how do you show me every day that you care about me?” Wow, has it been different. I think our other halves with the M.S. have to get a bold wake up call sometimes. I understand living with this disease is really scary, etc. However, I know I have enabled my spouse and in turn have allowed him to treat me like this sometimes because I felt bad for him. However, it gets old. I noticed once I started standing up for myself, our relationship got better. It went from a cold, mean, somewhat bitter husband to me feeling more loved, getting occasional kisses, and most importantly being talked to nicely.
Good luck & hang in there. I love this sight. It does make us feel like we are not alone. I know I have to keep remembering this, as we all do, WE HAVE TO LOVE OURSELVES & TAKE CARE OF OURSELVES FIRST OR WE ARE NO GOOD TO OUR LOVED ONES.
I’m new to this site, but I need to talk to some who my have the same situation I’m in. My husband is 65 and has had MS for twelve years now. He is totally bedridden and has a feeding beg in his stomach. No use of legs and left arm. Unable to sit up alone.. total care in everyway. He just recieved a trach this past year and requires suctioning constantly. I am his main caregiver round the clock. I have help three hours a day for five days. However they are not permitted to suction him, therefore I really can’t get away. At times I get really burned out, but I love him so much and want to be there for him. Thanks to the VA I’m able to care for him at home. We have a hospital bed and supplies. oxygen and suction machine to care for him. I’ve wanted to place him in respite care so that I could get away for a few days, but the VA has stopped that as of now. Does anyone know how to go about getting respite care through Medicare? And do they pay for meds too. I’m to have surgery on my achilles tendon soon and it is going to be difficult caring for him on one leg. But I will do anything I can to care for him. I have too admit though that there are times when I feef stuck and so alone with the world going on without me. I miss the opportunity I had hoped to have had with him, To go places and see things when he retired. However two weeks after retired he was told he had MS. Then is was doctors and therapy from a cane ,to walker ,wheelchair, to bed. But he has never complained once. But I could use someone to talk too with the same situation.
.
Hi Judy! Just wanted to send you a cyber hug. You have a lot on your plate with worrying about your own health as well as the care of your husband. Society puts such a terrible burdon on us that want to take care of our loved ones, but we’re only human and need some help. We can’t take care of someone else and ourselves 24/7.
I have never dealt with Medicare… maybe someone else out there has some tips? Anyone? But it seems to me that that is where you have to start. Asking for and finding help takes so much energy that we caretakers have such a poor supply of. There just isn’t anything left. I find it difficult when I have to make numerous phone calls and explain the situation to each person only to find out they think I should call someone else and then I have to start all over again.
Okay… so my two cents is… Make your phone calls and get yourself help and get yourself well… and in the future also… get some help so you can get out. We caretakers have to steal moments so that we can enjoy life… even small moments. It’s a necessity not a luxory.
Keep us posted, Judy!
Hugs, Linda
Thanks Linda for the support. It really is frustrating making calls and dealing with all the things you have to do when you need help. You always are told to take care of yourself, but when you are 24/7 caring for your loved one, when do you get the chance. With me, if I get some time I would like to get some sleep. If I do go out for an hour, I always have my husband on my mind. I feel that just being able to relate our feelings with those that truly understand how it really is , helps. People today are quick to tell you what to do,, but have never been in this situation. We seem to have moments when we feel we will get through it and other times we feel trapped. I try to take things as a learning experience. I want to be a help to others as well. Thank you for the hug.
I am new to this site, my husband was diagnosed with MS June 2010 at age 47. I have known for the past 5 years or so that something was wrong with him because of changes in his personality and anger issues. He was on Rebif for a short period and that didn’t help at all and is now on Tysabri. I never know what he will be like when I come home from work, some days are great and others are just horrible. Some days he picks fights with me from the time I get home until I finally give up and just go to bed for the evening. I have started a once a week exercise class through my work and he doesn’t like me to go and if I shop for more than 2 hours on a weekend he begins to text or call to find out why I am taking so long and when I will be home. When I am at home he either is lying on the couch playing games on his ipod, being negative, or picking a fight with me.
I’m so glad to get this off my chest, people who are not living with this have no idea what we go through as caregivers. I really do love my husband and I know he loves me and really doesn’t mean to be this way.
Hi Phyllis,
I really know what you’re going through, as do many others that have posted on this site. I think others will agree with me here that it’s okay to take a stand and let your husband know it’s not okay to treat you this way. Just because he has MS does not give him a license to treat you badly whether he means to or not, he’s doing it and it has to stop.
My husband also hated if I would go out, if my work required that I’d be gone during the evening. Also got the phone calls and texts… when are you coming home… only to face verbal abuse when I did get home.
I speak from experience. I didn’t put a stop to it and I actually started to believe all the mean things he’d say. The mind games he would play with me. I pretty much hit bottom and then I realized the world did not start revolving around him because of his MS. I matter too. I deserve to be treated with respect. After that people just started showing up in my life that had the same experience that I did with MS. I realized I wasn’t alone. I’m not a bad person. So I’m slowly crawling out of my abyss and making a life. But it’s slow and I still let the comments of people who don’t know what we go through hurt me. Anyway… I am making steps in the right direction… and I hope you see too so you can avoid my mistakes.
Because you love your husband it hurts all the more. So… as many of the posts read on this site… stand up for yourself, get help so that other people are involved in his care, make time for yourself and get out and enjoy yourself. You matter and you need to take care of your emotional and physical health too.
/Linda
The mood swings hurt but I think it hurts more feeling so helpless. I want to make it better for him, it is so hard watching your best friend suffer. He’s so quite not even sure what is going on. I hate this disease!!!!!!!!!!!! Sorry just had to vent. Usually my shoulders are strong but feeling a little heavy today.
Huge cyber -::HUG::- Amy! I think we all agree that in addition to advice or just understanding, we use this for venting and strong shoulders are not required here. We all feel this pain with you! Thank you Rick! for hosting this for us! Hugs to you as well!
Thanks Linda Hugs to you!
It is nice to vent when you feel overwhelmed in caregiving.It’s not that you don’t want to care for the person you love, but you just need to express your feelings to someone who is going through the same things. Once you vent, you feel you can go on with things. Life is not always a bed of roses. But with a beautiful rose , I find it comes with thorns. But the beauty of the rose will out way the thorns. I hope this makes since to someone. I love my husband with all my heart. His care can be heavy at times . He is totally bedridden and can’t do anything at all for himself. Yet he is a rose in my life.
Beautifully said Judy thanks for sharing it makes total sense. Hugs to you!
I just signed up to this site and have started to find other outlets. My husband’s mother has MS. We are in our late twenties. His dad passed on 5 years ago. He is an only child…so we are the caregivers, Or are about to be I should say. We are at a loss in many respects when it comes to this. In the last two years she has been having more and more trouble with walking and memory. She now thinks that people are stealing from her/breaking into her house. We know for a fact that they aren’t. So now we are in the place that we need to figure things out for her including taking over finances. I can see the stress in my husband and even myself so this blog goes right to my heart. We went for a long car ride today just to escape some of this for a few minutes. It has been a weight on us and then we feel guilty for being annoyed at the burden. It’s nice to hear/read other people’s experiences as well.
It’s alright and a natural response to be annoyed at how this change in life events has impacted your life. Frustration, anger, resentment……all normal responses to MS and cargiving. The trick is to not let if affect how you interact with your loved one. Easier said than done. I struggle with it every day. My goal is to have more days when I share love and a caring attitude and less when i let my wife see my inner anger and frustration.
Hi!
Just found this when I was surfing around, MS World. Don’t know if it’s anything, but it looked interesting. It’s a conference call for MS Caregivers.
http://www.msworld.org/events/calendar/2011-04-25-family-and-caregivers-people-ms-conference-call-maggie-kazmierski-msw-lcs?utm_source=MSWorld+Express&utm_campaign=d11105df5b-MSWorldNewsletters++April+18%2C+2011&utm_medium=email
/LInda
My husband who is a professor at the local university was just diagnosed, or is in the process of being diagnosed, but so much rings true so far that we’re pretty much sure this is what we are dealing with. He has had health problems relating to a couple of popped discs and two back surgeries, and we’re not really sure now how long the MS has been lurking, in there with all his other symptoms.
I am understandably overwhelmed. We have a strong church community who will be there for us in many ways, but there are also likely to be lots of people standing by with little platitudes that do nothing more than make me want to punch them in the nose. “God never gives you more than you can handle.” Once someone said to me and I grabbed his necktie and pulled him down face-to-face and said “Define ‘handle!'” I doubt he ever said that again. I know he never said it to me again.
I am a writer and so I have already mentally conceived ten different ways this book ends. We were both previously widowed, and I threw in a divorce in between, just for fun, so we have been married for ten years. Just as he was coming out of the fog of the grief over losing his first wife, the medical stuff started. I truly have never known my husband when he was not in emotional or physical pain. I had dinner with this really charming fun guy once in Atlanta and then the vision closed. Perhaps that will help me to deal with this current new onslaught of crap, er symptoms, not grieving the old Thom because I never really got the chance to know him.
I can see things already starting to get tense between us. This morning he couldn’t find the pair of pants he wanted. I pointed to his closet and told him that if it wasn’t stuff full of things he never wears, I would have a place to hang up the few outfits he wears over and over. He took about twenty shirts out of the closet and threw them on the floor and said, “Fine, start by throwing these away.” I had half a mind to do just that.
It is my feeling that in preparing to deal with an illness like this, life would need to be orderly, even moreso than usual. He isn’t very neat. His side of the bed is always littered with books and magazines til you can’t see the floor. I know that if he gets out of bed some night and experiences some of the clumsiness and other things we read about that clutter isn’t going to help. I feel a real need to take control of our personal environment NOW before we get to that state.
I am overwhelmed and depressed right now. I’ve been through many difficult things in my life. I lost a brother when I was 19. I was widowed at 26, remarried at 31, lost two unborn children during that marriage, was divorced at 40, remarried at 45. Thom is a wonderful husband and I love him dearly, and I want to head off as much of the conflict as I can. This morning he was trying to clip his fingernails. I asked if he needed my help. He said he would chew them off before he asked for my help. I snapped at him, told him he was going to have to lose the macho attitude and learn to accept help with things. He came in later and apologized, asked me if his mother trying to stay in her home and be self-sufficient as long as possible meant she had a “macho attitude.” He then told me how scared he was of not being able to take care of himself. How do you deal with those kinds of things?
I am at the beginning of this long and scary journey and I want to be a kind and patient wife and caregiver. I fear that he will get snappy with me and that I will not always react patiently.
I wish I had time to respond to so many of you personally. I had to finally quit reading before I got more overwhelmed. He doesn’t want to tell our kids and our friends and other family about this yet. but I feel I need to have someone I can talk to about it, so I am glad I found this blog.
Susan
Susan,
All I can say is that I understand. I have experienced the torture of watching someone i love slowly having their life stolen bit by bit. My wife has had MS for 38 years and it is finally wearing down her body and spirit. My spirit is lost also. The ability to retire, help our children, enjoy a walk with my wife………all stolen from me. But I find that no one really cares about the spouse of someone with MS. In 30 years of being married to someone with MS…..only once…….yes ONCE……..have I been asked how I am coping………..i realize that I am left completely alone to cope. The anger and resentment I feel can be overwheming and does impact how I treat my wife. I wish I had the strength to prevent that from happening…….but up to this point I don’t have it. I’ve had 30 years to prepare for what I see developing with her illness in the next few years……..but I still am not emotionally prepared for the reality of what’s next.
WOW! This site really hits close to home for me . My wife and daughter were both diagnosed with MS 5 years ago and life has been a roller coaster ever since. thank God my daughter is in a long remission as of late and does not have any simptoms, my wife on the other hand has not been as lucky and has been devestated by the disease, she relies on me for just about everything now as she can no longer walk on her own. Many days i feel hopepless and wonder what lies in the future for us all. I am like many of you in that i seek very short periods away from my reality, a morning walk with my dog, a quick workout at the gym, a trip to Starbucks, whatever works, we must take care of ourselves. I think i live in 1 1/2 hour blocks and then my reality kicks back in and i have to get back home and cook ,clean , help my wife with her needs and whatever i have on my TD list. Life Sucks right now. i have been known to just break out in a good cry every now and then (usually when i am alone and thinking about our plight). I have never been a detailed person so i wont burden you with a lot of info. The best advise i have i guess is that when i get down really low and cant seem to find the strength and want to give up. i think of the beautiful women i have in my life and what they are going through, then i realize my life is not and never will be as hard as theirs is. Oh and i think of the toes in the sand… :^)
I was thinking over this weekend about the most difficult emotional issues a caregiver can face. One that is not often mentioned is envy. In my case i think envy leads to anger. What am I envious of you ask? Because I’m among friends I’ll just let it flow:
1. Couples with two incomes so the financial burden of living is not so severe
2. People who can actually retire – with a wife with MS I am doomed to work several jobs until I drop to keep things going – no end in sight for me
3. Couples who can play tennis, bike, ski together – like we did early in our marriage
4. Couples who can afford to financially help their kids – all of our income goes toward health care deductables, etc.
5. Families who enjoy a sense of “normal”
6. The way cancer survivors are honored and cheered in public while all I see is silence and confusion about those brave individuals battling MS
I better stop for now. I’m embarrasing myself with my whining.
It is true, there are a lot of emotional issues we face as caregivers. My husband had to take an early retirement only to be told two weeks afterwards that he had secondary progressive M.S. We are a one income family. Now I’m a full time caregiver. My husband is now bedridden and total care in everyway. So far I care for him at home. He is on a feeding tube and the last thing he received was a trache. My mind thinks of all the things that we wanted to do and now can not do. It gets real depressing at times , when you hear and see all those around you doing the things you wish to do. Sometimes you feel trapped. Yet we married for better and for worse, in sickness and in health. My love for my husband has really been tested. However He is worth all the time and effort it takes to give him as much normal life at home with grandchildren and children all around him. The only thing we can do is make the best of our situation and create as normal of a life as possible. I would only hope that if the roles were reversed, he would do the same for me. I cherish what time we have had together . May you have peace in knowing that you are doing all that you can do for your wife and you will have now regrets.
I read your post, and can identify with every point. I too am envious of others, who have the opportunity to look forward to retirement, the freedom of a two-earner household. I am fortunate that my husband can care for himself, although it is very difficult. He is not able to walk, but has many advantages such as power wheels for his chair, an accessible home and a vehicle with hand controls and a lift. My biggest challenge is not the physical disability, but the cognitive and emotional changes. The depression is most worrisome. Doctors have prescribed meds, which stay in the bottle, or if he takes them, its only now and then. Of course that’s not effective. The cognitive and memory changes are subtle to most who come in contact with us but very evident for me. Angry outbursts, bouts of sadness – and I am told that “I just don’t get it”. My one wish would be for my husband to agree to counseling and medication to help with these issues. Any suggestiong on how to make this happen are most welcome. Its been a long 20 years, and I feel like I am sinking.
Depression medicine does help some. Good to hear that he can do things for himself. It would be good in he could get into counseling or medication. We lean a lot on prayer and God. It is good to encourage him to do hobbies or small things that he enjoys. Reading would ,if m.s hasn’t affected his eyes. I know my husband saw double for awhile. Now he has trouble reading. He just watches TV. His memory is still good. But he can move hes legs and only one arm. He can’t sit up alone.Has to have everything done for him. We just take one day at a time. Some are good and some are really bad. We feel that if we still have one another then we are blessed.
I have just started dating someone with MS. He was diagnosed a year ago, and his wife checked out saying she had not signed up for this and the divorce is just 2 months out. He walks with a cane and has a happy attitude. So I am trying to learn what it is all about and what is in store for me. I appreciate all your honesty and your comments are positive and uplifting even the whinny ones :-). Thanks for sharing.
I am a friend of a caregiver and his wife has had MS for over 10 years. She still walks on her own but is very unstable at times. Her main problem is that she acquired dementia (cortical and subcortical) from the very beginning. She is a little over 50 years old now. She did have the blessing of not knowing that she can’t remember things. My friend said he could handle the MS but the dementia is what is so devastating to him. He takes care of her on his own and has said many of the same things the above writers have stated – about nobody seems to want to help out. He also has had the envy or made statements as to if just isn’t fair. They have a long row to hoe but are taking it a day at a time.
Dear everyone,
I’d like to take up the topic of our children who are living in a home with a parent that has MS. I tried with all my might to make my children’s childhood as normal as possible and to keep our family together. I think more for their sake than for my husbands. It totally backfired on me. I see I posted back in January that I started to realize the impact that living with MS had on my children. My daughter has now been diagnosed with TMJ. A very simple explanation is she clenches her jaw so that it gave her migraines, however it’s much more complicated than that. Her doctor took me out of the room and told me my daughter must be under incredible stress for her to do this to herself. She asked me “What’s going on at home?”
With both of us in tears I apologized to my daughter for not seeing she was in so much pain. She looked me right in the eye and said she did everything she could to hide it from me. She felt I was already dealing with too much. Here we were trying to protect each other and it went all wrong.
My daughter’s doctors and counselors tell me her situation is serious; it has made me have to choose between caring for my husband and caring for my daughter. I’ve chosen my daughter.
So finally, after all these months, I’ve come to a decision. Today I’m looking at an apartment for my daughter and I to move into. My husband will continue to live in the house with the 24 hour care he gets from his assistants. It’ll be complicated with lots of paper work, but I’ll get through it. I guess, you can say I’m lucky that I live in a country that will provide this care so that I can leave. Why don’t I feel very lucky? This is the hardest thing I’ve ever done. It’s killing me. I haven’t told my husband yet.
Please please please make sure your children are okay. They’re on the receiving end of these mood swings we’ve been talking about, too. They’re watching both their parents experience terrible pain.
I think there is too much focus on the person who has the MS and the family and how they are dealing with it is ignored. The whole family suffers from MS! And probably more than anyone our children!
/Linda
Linda,
To make this decision took a great deal of courage. It’s not my place to judge whether is was right or wrong. But I’m with you and your daughter in spirit.
Thank you Mary and Jim for your support!
It was and is a very difficult decision to make. And just for the record, I’m not abandoning my husband. I’ll still be responsible for much of his care and the practical things like paying bills, shopping, doctor appointments etc etc etc. We just won’t be living under the same roof.
Hugs!
Linda,
My heart goes out to you and your family. I know you love your husband, but there are limits to what you can bear, and what you can put your family through. No one knows how difficult it can be. Please don’t second guess your decision. Its a blessing that you can continue to provide for your husband while giving your daughter as stress free life as possible. You are correct, when you say the whole family suffers from this terrible disease. My children are now young adults, living outside the home. I continue to try to protect them from the drama that occurs frequently with their father, and they try to provide emotional support for me, as they know all too well about the life i lead. I have no options but to continue to pray that I can get my husband to agree to the emotional and medical help he needs. His physical health continues to slowly decline , but his unpredictable outbursts of anger, mostly directed at me, is really the biggest problem. I try to remind myself that its not me, and I have the support of counselors and family to rely on. Its a tough road, and there are many days when I’m convinced that I can’t do this for another day.
I am another new person to this site. My wife has ppms. She is more of a fighter than I am. She works out 3-4 days a week. She attempts to be grateful for all that I do for her, but I spend so miuch energy taking care of her that I can’t seem to respond in kind. You all seem to have great caring loving attitudes. All I feel toward her is a disconnect. I feel selfish and impatient. People around us say how they admire how I care for her and stick by her They have no idea how much I hate hearing this since I am no hero and just feel worse after these comments. I’m angry. With her when It’s not her fault. Angry with myself for not coping better. Angry with others who talk about caring but never show it. I train 6 days a week and I am fully functional as a MAN. What do I do with that? I’m angry. I want to touch a woman normally. I want to dance and kiss a woman tenderly. I want to feel a woman in the way a man and a woman should. So what do I do about that? Well its not her fault that she is not the woman I married. Thanks for giving me a place to express all of this. I can and will do this one day at a time and accept that I may not be at my best at it on any given day. I do believe that something good will happen soon.
Martin,
Hang in there. Everything you are expressing I experience……..everything!!!!! You have every right to be angry, frustrated, and yearning for a normal sexual relationship. I’m debating how to deal with that reality now. I haven’t decided yet what my course of action will be. The statements that folks “admire” us as caregivers rings hollow to me. They can’t comprehend how this miserable disease has destroyed our loved one and us. Yes we can keep a positive attitude, look on the bright side and all that other BS but the reality of what MS has done to our hopes and dreams is unimaginable. I’ll write more later on this. You are not alone.
Thanks James for the support. My wife’s speech, walking and emotions are all compromised greatly by this evil called ms. We have both learned enough sign language to help us communicate. We also text allot. I know from her how hurtful not being a “complete” woman. What bothers me is how little help I give her with this. I seldom hug her or kiss her. I try to treat her with respect. When I’m impatient I never raise my voice and while intimacy is disconnected, I try to show support by letting her know when she looks nice and encouraging her when she exercises. I shop for her and am learning how to cook which we both enjoy. I just find the MS so unattractive that I believe it effects even the little show of affection in me. I know I need to do better and pray to see it soon. Watching other couples live affectionate intimate lives is hard without feeling envy. Looking at other woman and seeing how “functional” they are is a problem for me. I look but thats it. The question remains what do I do about my manhood. Do women think they are the only ones to want to feel attractive and wanted? I know that these are tough issues with tough answers. Someone might suggest they be discussed with my wife. Aside from the fact that has happened, the character of the pain and fight ms takes leaves little room to connect the dots of this issue with your spouse. Well thanks again. I feel this exchange so very helpful.
James and Martin,
Just want to add that this isn’t just a guy thing. I’m glad you brought it up for discussion. Out in the real world we bottle up our feelings and don’t talk about this subject. Thanks both of you for stating how it is.
Thanks Linda for your input. I know men and women are different. But I see little from women caregivers on this subject. As I said, I know it’s not an easy one to deal with but not discussing it will not help. I’m told women are less likely to have a need for intimacy when it’s just not available. This is hard to believe, but maybe this is a guy problem. Someone once said men will fake love to have intimacy, while women will give intimacy to have love. I think that if I just could have a female friend to talk to or get a hug from would help. But I guess that could lead to trouble. Anyone have a thought about all of this?
Men and women are different in some ways, but more than that, individual people are different from each other. Some people find sex is really important to them, and others find that it’s not. Women are not really supposed to talk about sex, so we may not talk about it with others as often. I will say for myself that I recently started dating a man with MS, and the thing that scares me most is that he will not be able to have sex anymore once I have fallen in love with him. This makes me afraid that maybe I should not get serious with him because I would break his heart and would not be able to stay in a relationship that didn’t involve sex. I could care for him as a friend but I also have physical needs. I think the difference here is that I have only been with him for a month, so I am more self centered or more thinking about my needs than if we had been together for a long time or were married.
Samantha,
You are not self centered, but honest. Your concern about being in a relationship sans sex is so very valid. Listen to yourself and your fears.
While MS is so unpredictable your new beau may never progress to the state where he can’t have sex, but he may. These are the real and present fears of MS.
If your fear of lack of sex is on your mind. Listen to it.
Peace
Martin,
Caregivers need to take care of themselves too. I think it depends on what the person you are taking care of would think. They are still the same person for the most part on the inside or their mind is the same person. Depression plays such a big part in this too. They can’t help what has happened to them and are hurting too! I liked what you said about men giving love for intimacy and women giving intimacy to get love. It is true much of the time and is sad.
On the other hand, no matter how conservative you are and what your beliefs are, others need to be more understanding if trouble was to happen. I can see some situations as gray areas. Others can see it only as black and white. I also believe in marriage vows – in sickness and health but have grown to see not everything is black and white. But that can’t be used as an excuse either. People need to take into consideration just how the state of mind is for the person with MS. My friends’ wife has had dementia for nearly 12 years and he has struggled with the love of his life not remembering much of anything. You just wonder how long can he or you or any caregiver put up with this.
I’m not saying it is wrong or right but you need to consider both of your needs and still love the woman you are married to. Hang in there and I can so feel your pain through your words.
Angie, thanks. The bottom line remains that this is all heavy lifting with no easy answers. Hearing the story of your friend also provides perspective. There is always the reality that no matter how bad things seem someone’ s load could me heavier than yours. Thanks for taking the time to comment.
My hubby has had MS for 9 yrs. He’s having more symptoms. Wondering if your significant other has any of this and what you may do to help it. He is having a sharp pain of coldness that starts at his shoulder by the neck. Then he has extreme coldness in his leg from his knee down to his foot. He says the warmth of my hand helps, however, I’m not always next to him to help.
Also, do you find that the affected person laughs a lot and cant stop. And its over things others wouldnt laugh about. I thought it was just me thinking it was weird, until my teenager commented on it.
All advice is so appreciated.
Hugs
Hey Pam! MS has sooooo many different and strange ways to show itself. These things he is experiencing just seem to be more ways. I’m only speaking from experience and I’m definately not trying to speak as a professional, but these are symptoms are in a long run of symptoms that you’re both going to have to deal with. :(
Hugs, Linda
Thanks Linda.
I just wish we could figure out this cold thing. All the best to you too.
Hugs back at you, Pam
My husband has had MS for 20+ years. He has had terrible sensations in his legs, and arms and hands, a result of neuropathy – the nerve damage caused by this disease. He described his neuropathy mostly as intense burning, but it can also be intense feelings of cold. His pain was initially treated with neurontin (gabapentin) – also tried lyrica, which eventually caused (or contributed to) feet swelling and hydrocodone (not so good, habit forming) He now gets medicine through an intrathecal pump, which has been a Godsend! No more oral baclofen for spasms,and he gets pain control too. There is baclofen in the pump, which goes directly to the spinal fluid, causing no drowsiness or other side effects. In addition, he receives a very small amount of morphine and bupivacaine for the neuropathic pain. This has been extremely effective, Thre is alot of information on neurontin and lyrica for neuropathic “pain”. There is also the option of an intrathecal pain pump (medtronic). My husband initially got the pump for spasticity, and added the pain meds later.
Thank you for your feedback Marchelle & Mary! Mary, what state is your hubby in? Is he able to walk, etc.? I couldn’t say this to anyone but caregivers. My hubby has, shall we say, the drunken walk. He starts by hanging onto something & then takes off almost as a new walking toddler would with a destination in mind. However, he can’t walk straight, hence being that off balanced walk. Mary, I’m just curious as to when & what stage those other prescriptions are available. My hubby does have constant back pain, spastisity probs, that burning & cold sensitivity. He is on Tysabri now. He’s getting so skinny also. He’s losing and I’m stress eating. I’ve gained 50 lbs in the past 3 years. I know I need to lose, but I, of course don’t take care of myself, as I do my hubby, and my teen boys. I always show that I’m positive.
I so appreciate all of the input from all of my caregiver famliy! Hugs :)
Hi Pam,
My husband used to have the drunken walk, then he was a wall walker in the house, and used a single point cane outside, with me on his other side. He then went to a walker in the house, and wheelchair if he went out. He is now using a wheelchair all the time. But he’s in PT again, and hoping to get back to using a cane. He was walking when he got his baclofen pump – he got the pump mostly because of the unrelenting spasms in his legs, and sometimes in his arm / hand. About a year after getting the pump, they began to add the pain meds, because he was taking too much hydrocodone. I have to say, I am not too upset by the wheelchair use, because he is so much safer – we had alot of falls – no major injuries, but the risk of falling was very stressful. I too, don’t take very good care of myself, but am trying to do better. My husbands doctor has not put him on Tysabri – I think because of the increased infection risk. My husband does not have a spleen and therefore his immune system is considered compromised. I think its worth a shot, to talk to the doctor about your options of meds for the spasms and pain. Good Luck!
This is my first time visiting this site and I’ve already found it to be very comforting. My husband was diagnosed with MS 7 years ago. What a ride! I was prepared to handle the “for richer or poorer”, but not so much the “in sickness and in health”. But without a doubt I truly meant “til death do us part”. I feel like no one understands. My husband has always been the person that I shared my problems with. Now I can’t turn to him when I’m sad because I don’t want to make him feel guilty for causing the sadness. He tries to put on a strong front, but I know that he’s feeling emotionally broken. He’s lost self-confidence and has withdrawn himself from the outside in a lot of ways.
I can deal with the physical changes. What’s hard for me are the cognitive changes and the loss of the sense of power that he used to exude. I’m the kind of woman that likes a self-assured, confident man. Now I’m mourning the loss of that. I’m grateful to my family and God for helping me through this. And I’m also grateful that I have this site to turn to when I need an understanding ear.
Marchelle, I can relate to your protecting your husband’s feelings when it comes to your sad times. It sounds like your bond remains strong notwithstanding the rough circumstances. Please know there are others who understand what you feel. I am able to get away for small breaks on most days. That alone time is like healing for me. Even if you can sit away in the backyard for a little while, that time in prayer or just quiet can be so helpful. I say that I can do this one day at a time. Sometimes It’s one moment at a time.
Yes Pam, I’ve also noticed the unusual laughing a few times ( usually during an exacerbation).
Hello, I so appreciate this site and the sharing outlet it provides.
My partner, M., of nearly 3 yrs has relapsing – remitting MS. he’s had a pretty tough year since last summer. MRI’s confirm more lesions and more attack on existing lesions. So that explains some but of course does not help. What is difficult for me is the roller coaster ,of course. We can;t plan anything for that makes him anxious. We don;t go out much to try to be fiscally responsible. We aren’t doing the activities we used to for M. is so exhausted. Someone recently mentioned the diminished self confidence in an MS patient, Just this weekend M. confided his lack of confidence in me. It explained some things – but really sucks. I fell in love with a confident, capable, kind man, I know he is still there but all his anxieties, angers and negativity are present DAILY. M. shared with me last week that his priorities are his son, his health & his financial responsibilities to his son and his ex-wife. When I asked where I fit in he told me I was not on the list & that he takes me for granted. Darn straight he does!! /Ouch. This is something I have not shared with any friends/family for they would not understand. The thing is – I don;t know how I would be acting if the roles were reversed. But I like to think that I would give him more than he is giving me. a hug – a touch – a KIND word, a THANK YOU…. those things would be nice. And I do think that I would try to take a few moments each day to reflect on what I have to be grateful for – and top of the list would be a supportive partner. Even here – in this safe venue – I feel like a whiner. It is not about me, but it is about “Us” (M. and me). We are slipping and can;t even talk about our future for it saddens M. and makes him anxious not knowing how his health will be……. thanks for reading and please offer up any and all advice, words of wisdom, etc
You are not a whiner. You are a loving and caring partner.
Dear Meg,
Since you are new to this site, you have come to the right place. YOU ARE NOT A WHINER. We are all going through what you ar in one way or another. I am sorry that your partner, M., is not putting you on his list. I know how hurtful that must be. I know how difficult it is not being able to talk to friends & family, because they just don’t get it. So that you know that you are not alone, If you get the time, try to look at some of the other postings. You’ll see that all of us caregivers, partners, etc. go through a lot of the same. You do need to get it out. I have been with my hubby for 22 years, he was diagnosed 9 years ago, but they think he had it prior to that. It is a roller coaster. I love this sight to be able to vent and have others who truly understand.
You do need to make time for you. I wish some other caregivers lived in Chicago area so we could meet. You need to find a good time to talk with M. and let him know how you feel. I used to hold it in and just get angry. I don’t know what it is with these men but mine doesn’t show much affection either. He played games with me when I was a little cold towards him. I told him that I show that I care about him on a daily basis by all the things I do for him. Then I asked him how he shows he cares for me. That woke him up for a while.
Hang in there girl. You are a wonderful person and you need to know that. Hugs
Meg, I would just like to second what Pam just wrote. 27 years with my hubby. Sometimes I think he’s told me he didn’t love me more times than he’s told me he has. Same thoughts run through my head. Is this MS or is this how he really feels about me. I think the words “whine”, “whining” and “whiner” should be banned from this site. We need to talk about these things and where else can we? It is NOT whining!
We as caregivers have to start realizing that we matter too and it doesn’t mean we’ll take care of our loved ones any less.
Thanks Martin for the suggestions. Sometimes I feel like God would be disappointed in me for not being grateful for what is good in my life, and focusing too much on my husband’s MS. I have some friends and family members who are widows and they would give anything to have their husbands alive and with them now. When I get really down, I keep that in mind. I’m thankful that my husband can still walk unassisted and drive. And I’m also thankful that he doesn’t have mood swings and lets me (and others) know how much he loves and appreciates me. I just want him to not “give up”. Two years ago he was forced to take a disability retirement after 20 years of service from a job he loved. The physical demands of the job were too much for him to handle. I suggested volunteering somewhere, just to keep him active and give his brain a workout. He just chooses to sit at home every day. I try to remind him, without being too negative, that MS is a progressive disease and I don’t want him to look back at this time and regret not doing more with his life. Some patients would love to have the use of their legs, and be able to drive and take care of themselves the way that he can. I try to tell him that there’s so much he could be doing, and so many ways he could be serving others. He can’t walk for very long (15-20 min.) and he has tremors in his right hand, but there are still many things that he CAN do. He also experience some memory and cognition problems. I feel like he’s wasting his life away. Just one or two days a week for a couple of hours doing something…anything would be beneficial for him. He’s heard this from me, my parents, his mom, doctors, nurses, friends and family, but to no avail. He feels like he’s nothing without his job. So in his mind if he can’t do that, then he won’t to anything. It’s so frustrating to watch this, but everyone tells me that he has to do it when He is ready, not because we all think that he should. But my feeling is life is short and it’s passing him by day by day. And I just want him to get the most out of it before the MS makes it impossible. I thank God that he is still the loving husband and father that’s he’s always been, I just want him to get back in the game.
Hi everyone, My husband of 3 years just got diagnosed with primary progressive ms 2 months ago. He got sick in january and since then things have been out of control with tests and drs and hospital addmissions. Because of his Ms his bladder no longer works and he has to walk with a cane. Did i mention he is only 35 and I am only 25. We have a 18 month old son. There has has been alot of strain on us. We have not been able to get physical for sometime. He is either to tired or sick or he hurts. I feel so terrible. I am trying to be patient with him because he has not come to terms with his diagnosis so he is touchy and moody and mean at times. I do not know where to turn to. I try to talk to friends and family but they really can understand what either one of us is going through. I am afraid to let him go anywhere by himself fears of him falling are always there his legs just give up. I am afraid to leave him alone with the baby but I have to go to work he us unable to now. I am hoping that someone has some advise on how to deal with all these changes in our life. i feel so alone. I am afraid to talk to my husband about any of my feelings because he has his own problems that he doesnt neeed to hear me try to get through this too. Help!
Hi Erin,
My prayers go out to you and your family. I too understand what it feels like not to be able to share my feelings with my husband. It’s going to take a while for you to process what you’re feeling right now. I’m still adjusting 7 years after my husband’s diagnosis, and he hasn’t fully come to terms with it yet himself. Local MS support groups and forums like this are the best places for you to express yourself and have your feelings truly understood. Lean on your faith, family and trustworthy friends. What city are you in?
All……my wife has fought MS for 38 years. We both have still not completely accepted the fact that it is ravaging our lives. Anger, fear, frustration, depression, anxiety…….we both deal with these emotions every day. I find the emotional impact on the caregiver is ignored. I suffer alone and in silence except for this forum . Friends, relatives, even my children provide me with little or no emotional support. I think it is assumed that this is my role in life. My needs and wishes mean nothing. Two issues are slowly killing me……. the lack of physical closeness with a woman and working four jobs to make up for having a partner who cannot work.
Jim you are so right. The caregiver’s emotional well-being is very much ignored. It is so difficult to tell another family member what you are feeling without sounding insensitive or selfish. I wish we all (caregivers) weren’t so scattered around the country, so that we could form some sort of support group.
Jim I think the response or lack of it we get is due to fear, selfishness and assumption. Fear of saying the wrong thing or even catching something imagined from our situation. Selfishness, as it is soooo much easier to go about your life instead of sacrificing your time to give someone a supportive rest; they might expect you to do it again. The assumption comes into play out of ignorance. They assume someone else is helping. They assume we will ask for help mostly hoping we won’t. Having said all of that it’s mostly on us. So let’s continue to be there in this forum and other ways for each other. We can be a supportive family of caregivers one to another. Martin
Hi everyone!
I wanted to share this link with you. It’s from Oprah’s website, but it has to do with caregiver burnout. It’s the first time I’ve seen it taken up any where and thought it was worth sharing. I think we can all agree that it goes much deeper than what this article is addressing, but what I found hopeful is that people are realizing it exists. It’s a start. Hopefully soon we’ll know how to help ourselves.
http://www.oprah.com/spirit/Recognizing-Compassion-Fatigue-When-Caregivers-Need-Care
Thanks!
In August of 2008, my wife and I agreed to divorce. It had been an unhappy marriage from the start and we stayed for the sake of the kids. In Sept. ’08 she was diagnosed with Prim. Prog. MS. Within 3 mos. of diagnosis she was unable to drive, lost her job and shortly therafter began using a wheelchair. I rededicated myself to the marriage, have put my heart and soul into caring for her but the issues that ruined our relationship remain. I know there are 2 sides to every story but she has been diagnosed with a personality disorder, is very abusive, and her mental illness has been amped up by her frustration with this disease. I have gone to therapy but find myself so unhappy and hopeless about the future that most of the time my relationship with my kids is the only thing keeping me going. Is there any one out there caring for a spouse and doing so out of obligation rather than love? I was a lively, active person. Right now I am lost and no longer know who I am. I will not leave her in this condition but the rest of my life could end up looking like this.
Hi Peter,
I think I’m finally in a place where I can admit that I’ve stayed out of some sort of obligation or commitment that I made many years ago. I’ve wanted to leave him many times but felt there was no one else to take care of him and I wanted to keep my family together for my children.
I think you can find in past posts where many people here take up how the person we’re taking care of with MS is very often verbally abusive and some physically abusive. I’m writing this not only to tell you that I know what you’re going through, I’m asking you to make sure your kids are okay. I didn’t see that my children were as depressed as I was over the situation and also that they fell victim to their father’s verbal abuse. You’re staying with her out of some sense of obligation, but you have an obligation to your kids that they grow up in a healthy situation.
You said you’ve been through some counseling already. Do you have contact with anyone that can do a sanity check on how the family is? Sometimes you need an outside person to look in. I know I did. I just didn’t see that my daughter was going through her own hell.
Wishing you all the best!
Hi Linda, My kids are grown and out of the house. The youngest is 21. My daughter is in therapy and has learned that many of the anxiety issues and phobias she deals with can be traced back to a scary and uncertain childhood with her mother. My son just dislikes her. I don’t want this to become about that. What I’m wondering is, what is my prognosis if I’m only here as a caregiver and no longer a husband, per se. I’m tuned in enough to myself that I know this is effecting me physically. ie. migraines, intestinal stuff, etc.
Is it possible to make the emotional switch, for both parties, from a relationship to strictly caregiving?
I read somewhere once that if your relationship is losy before the MS it’s not likely to get better.
peter, I know that I have thought about leaving more than you can imagine. But in the end I couldn’t live with myself, I know that life will never be what is suppose to be. But for now I have accepted this. My children are also gone and have no support but once I made up my mind I have come to accept this. But I have learned that I need to care for myself. In my heart I know their willl come a day when I can’t do this anymore, but I did it for as long as I could. No regrets. I will leave one day for a life of my own, but I will leave knowing I did this for along as I could. Im lucky because my husband never complains and is not verbally abusive to me. when that change comes I will not stay. But for now we are just caregiver and patient, its been that way for a long time.
I just found this site last night after a terrible day. so great to hear how I feel, and I am not alone. My husband served in the military for 23 years, it took me 7 years to fight the VA for service connected MS. His disease has progressed very fast. In 2000 I notice he would walk like he was a toddler learning to walk, (known as the drunking walk, in fact he lost his job because of it) we went from a cane to a motorized wheelchair in 5 years. I had to quit my job to become his caregiver in 2006. He is not totally bedridden, but I do everything for him. He has bladder and bowel problems, can”t feed himself or dress himself. I do get a bather 4 times a week for one hour. what a blessing just that hour. Sometimes I just wish people would understand how hard it is for us. Everywhere I go they asked how he is, but they never ask how I am. I have thought about leaving but can’t . the hardest part of this disease if the lost of my companion. From someone who did everything to nothing. Don’t get me wrong, he never, never complains, but doesn’t understand what I go through daily. But after reading all your post I deceided that Im at fault because I don’t take care of me. I will change my attidute and spend time on myself. thanks for all the post, they really help me in a time of crises. :)
Marilynn, do as much as you can but you are not a miracle worker. I agree with you that people just cannot comprehend how hard it is or how many life sacrifices you have made. We are all with you in spirit.
thank you james, I just try to take one day , one hour, one minute. Ive learned thats all I can do. Its a very lonely exsistance.
Howdy All,
Don’t know where to begin… I chanced upon this site and after feeling very lost and alone, I feel like I’ve chanced upon a path to a new “home”… Peter, Jim, Martin, and some of the gals’ comments could have come from my very heart…
My wife is entering her 8th year of ppms. After 26 years together and almost 23 years of marriage to my best friend, this is by far and away the hardest time I’ve ever been thru, personally. The chip on my shoulder that feels like a 2×4, the feeling of complete impotence when trying to help stop the progression of her symptoms, feeling like I’m completely and utterly invisible…
My wife is a warrior! But the monster is stronger… Ive been watching her go away in slow motion for along time now… So many questions and so many wonderments…
Thanks so far to everyone in advance of talking with you… Even your comments have given me hope.
John
John we all know how heavy that 2×4 chip can feel at times. I’m often surprised at how quietly my patience can leave me. Over time I’ve learned how to make my recovery time with this shorter, but It’s still surprising. I leave the house for short breaks which helps with the recovery. My faith has been tested in ways I never considered. I pray daily that God would renew a “right” spirit within me. My wife did not cause this. She didn’t take street drugs or get drunk and got in a car accident to cause this. It’s ulgy and neither of us knows why its happened. Does it matter? We have to deal with it. I’m working on not allowing my difficultly to show up on my face. My wife indicates she can see all the pressure of our situation on my face. I’m not hopeless. I truly believe a breakthrough will come; so I don’t want to carry myself in despair. The things I miss, sex, dancing, conversation (wife can’t talk), short and long trips, I put aside one day at a time. Anything longer than this I have learned is too much to consider and it negatively effects my outlook. Welcome to this caregiver forum and never give up even knowing you will feel like it.
Thanks Martin…
This site seems to be something of a paradox, if that’s the right word… It’s depressing and uplifting at the same time. The sadness of good people having to deal with what we are going thru is draining. Yet just the knowledge of that we’re not alone… we’re not the only ones feeling these “selfish,unappreciated thoughts”… lets me know it’s OK…
My sis has been taking care of her husband for almost 10 years. They danced every Friday nite in their kitchen… one time she slipped and was about to fall… he went to catch her.. they both fell backward , him hitting his neck on a large crock pot and has been a quadraplegic since.First let me say… she is my hero. But at times , I’ve had people insinuate that I shouldn’t bellyache about what I’m going thru with my wife and her ppms… afterall… look how hard your sis has it…
But her life is very black & white… Her husband would simply die without 24/7 care.
But we get to watch our loved ones ever so slowly fade away from us …
This site makes me sad… but uplifted. Thanks again Martin and to all of you for your comments and inputs…
HI John,
I’m not sure which is worse; being told to stop whining because someone else has it worse or being the one that people compare their lives to and say “Oh! Linda has it much worse than I do. I must stop complaining.” :)
I also hate when someone says, “It must be awful for your husband.” Well, yes, it is! But my whole family is suffering from his MS, not just him!
I’m holding on to my right to whine. :)
Linda,
I agree with the right to whine. One thing that blows my mind is that my hubby doesn’t think his MS affects our teenage boys and I. It helps so much to have you all to talk to.
So, does anyone live in the Chicago NW suburbs area?
Have a good day. :)
Hi Linda,
Looks like I need to take a cue from you and Pam about putting my guilt into a different box and not let it eat at me so much… I don’t like the word Whine… I’ve never been one that I know of… Oh… I can bellyache with the best… The weather sucks, the politicos are all corrupt,
the price of blah blah is too high, etc. But whining… People that take care of people and don’t get recognition shouldn’t have to whine… There again, the paradox of this place.. A bunch of giving and strong people needing a place to vent their overloaded steam valves!
I don’t know what the protocol is and don’t want to overstep the rules, but if anyone wants to talk , for example use an instant message, I’d be open to that…
Also, I’m in the south east side of Washington State, in case there’s any “neighbors” here…
Thanks Again,
John
Good News to share for a change… My husband started monthly Tysabri infusions almost a year ago. On his previous MRI before starting Tysabri, he had developed 3 very active lesions in 3 months. On his last MRI (this month), he had no new lesions in 9 months and the previously active lesions were no longer active. Praise God! The results have really been an emotional boost to him.
It’s been a long time since I’ve seen a spark of hope and vitality in his eyes. I pray that this is the start of a journey back to his former self.
My wife was dx in 2001 with relasping remitting ms and 3 years later with spms. She refuses to do anything that might make her feel better. No exercise, yoga, no changes in her diet and she smokes. I feel she is selfish that she doesn’t care about me or herself so we can have the best life possibe for as long as possible. We know things are going to get worse, I feel more disconnect everyday when I see her not willing to do anything that may help. She uses a cane but only if she feels like getting it. She falls a lot but refuses to try anything that will give more stability, bladder problems but refuses to wear any products. She is only 49 years old and I’m getting tired of trying to talk about it. The times we have talked about this her answers begin with I plan to start whatever, whenever and it never happens.
Sounds like she is in denial ! My husband has had MS since 1993 & is now bedridden. He too, gave up early on & I got tired of trying to prod him along. At this point in time I feel deserted & just recently seem to be fighting depression. I seem to more & more resent talking to people & hearing about what a wonderful like they have & all the family fun things they do with their spouse. It hurts & just makes me sadder. Just remember you can’t help those who don’t want to help themselves.
It’s hard not to be envious of others who have a normal family life. It hurts to think how life turned out for many of us….and please don’t give me the look on the bright side BS!
Robin, all I can say is I’ve been there. Actually, I’m still there, but I stopped arguing with my husband about it. We take our vows of “…in sickness and in health” very seriously, but then our spouses have no vow that they will do everything they can to take care of themselves. It’s not fair.
He’s actually tried to put the guilt trip on me that I was pushing him too much. Didn’t I think that if he could do these things he would? Well actually I think he’s totally given up and knows I won’t leave him so he’s taking full advantage of me. Very soon I won’t be living under the same roof anyway, but I’m still tethered to him.
I know NW Chicago. I went to school at North Park University on the North-side. I’m held captive in Europe right now, but I desperately want to move home. We’ll have to see what the next year brings. It’s too bad that we’re all spread out across the globe on this site. It’d be nice to get a group together to meet in person.
Stay strong Robin, and do some nice things for you. No one else is looking out for us; we have to do it ourselves.
Just discovered this forum today. My wife was diagnosed march 2003. She has SPMS, and hasn’t done much to fight back. She wont do any exercises, and as a result has declined to needing to get around in a wheel chair. A friend had given her a motorized unit but she refuses to learn how to use it. Eight years of denial gets heavy some days. Just reading these post has helped today.
Hi David! I’m not sure you could call this a forum ,officially. We commandeered Rick’s Blog. All of us, like you, found our way here through the quagmire of the Internet in search of other’s going through what we are, feeling and knowing the same pain that comes in the form of MS.
I know eight years can feel like an eternity. You’re among friends here, welcome.
Linda, I live in a NW suburb of Chicago
Pam (in the comments above) lives in the NW Chicago area, and wouldn’t doubt there are more of you there.
I am just coming into realization that I am a CAREGIVER and not just a wife to my sweet husband. I have been married for a handful of years. He was diagnosed 8 years ago, well before I met him.
MS is not on the forefront when I see my husband. Not initially anyway. I see a man with a strong will and a charming personality. HOWEVER, the MS issue is becoming more and more and more the forefront when I see my spouse.
Physical ailments are not such an issue, but cognitive function is. My spouse can’t keep simple things in order. He utilizes a calendar for appts, but can’t remember if he saw the MD last month without checking it. Things are CONSTANTLY misplaces, lost, or not ever seen again. Tonight for example, I wanted to open a bottle of wine. The two wine openers that I keep in our bar area.. are missing.. like so many other things in our home. Simple things like this frustrate me to no end. I feel the burden of resentment brewing. I feel an over whelming sense of I have to take care of EVERYTHING because it will get lost, misplaced or tossed out by mistake.
An example of my spouses cognitive issues. He misplaces his keys, wallet, phone… constantly. If I ask him to pick something up more than likely if I dont’ remind him, it won’t happen. I have to remind him of events ahead of time, days in advance, and he forgets simples things that we have discussed. I am an RN by trade. I feel my husband if I had to catagorize him is in the early early stages of dementia… its a horrible realization.
Meanwhile, I am stressed, overwhelmed and caring for two. I work full time, come home, get to clean the house because my spouse can’t do big things. I find piles of folded laundry from days ago waiting for me to put them away, because my spouse forgot.
I HATE MS. I hate what it does.. and I hate what I am seeing. What can I do to stop the anger and feelings of resentment??
SassyMS: I totally understand how you are feeling. I also have a lot of the same issues at with my husband. The forgetfulness is happening more and more. I have found that it saves a lot of frustration for me – if I just let it go. My husband understands he has real short-term memory issues. He has a note pad on a clip board and he writes down everything. If I want him to remember to do something or call someone — I just ask him to get his clip board and write it down. If it is something important (insurance, appointments to be scheduled, etc.) I generally make them myself. No need causing additional frustration for either one of us. We were together for over 17 years before my husband had his first episode. Thank goodness we have a very strong and loving relationship.
Seriously, we have decided that there is not a whole lot going on in our lives that requires either one of us to be angry and frustrated with each other. We just roll with it and do the best we can. I had to go over all the things we had going on and re-prioritize things. It’s ok if the chain link fence is not level (at least he stayed busy working on it and it will still keep the dogs in the yard), I am happy when he vacuums the floor (even if he only does one of the 3 rooms), When he does laundry – he sometimes folds items that I would have hung up on hangers (I am thankful that he did as much as he could).
Do you have a local MS group to meet with? We have one here and meet monthly. In fact – this month – we will be having a “caregiver” group meeting for 1/2 of the meeting in another room – so we can give each other ideas and do a lot of venting. It’s really difficult when there is no one to talk to and/or express concerns on these issues.
I hope things get better for you. I am glad you found this site to communicate with others about the issues that you deal with. I just found this site myself earlier last month.
Pleae stay strong and treat yourself to a day here and there.
Dear Sassyms
You started out calling your husband sweet and ended with sharing your frustration. Separate the man from what he does or doesn’t do. Since the problem is not the man but the disease remember that. You must get over ” I have to do everything”. Just do or don’t do what’s necessary. Otherwise your “what about me feelings” will take you to places that I have learned are not good. You can not fix the results of the disease in him but you can control how you handle you. This includes forgiving yourself when your feelings take you to unproductive places. I realize feeling its all on you is hard. You can make it a little easier by not sweating the smaller stuff. Only you can define what that is.
Well said Martin. Sassyms I totally understand. I often have the moments when it seems like the weight of the world falls upon you. My husband was diagnosed close to a year ago. It’s a definite roller coaster ride. I have two young children and have just come to the conclusion that my house is always going to be a mess and we are living in a new kind of normal. I have my moments when I just want to scream but am slowly learning to not sweat the small stuff and try to keep focused on the positive moments as they occur. My perspective on life has totally changed( well i’m working hard on it). I have learned I can not control it. I would like to share something that I wrote to my husband at the begging of this crazy journey called MS.
I can not fix it
I can not erase it
I can not help it
I can not see it
I can not make it go away
I can not heal it
I can not predict the future
I can not understand
I can not protect you
I can BELIEVE
I can take each day on
I can be your crutch
I can be your friend
I can listen
I can wipe your tears
I can and will be here for you every step of the way
Hang in there Sassyms I totally understand. God bless and be good to yourself everyone!
Hello everyone,
My husband recently found an organization called Can Do MS (www.mscando.org). He will be attending their meeting in Colorado in October, and he is very excited about going. Anything that my husband can look forward to is a blessing. We also have a caregiver support group in my community – caregivers only – a good place to vent, and not be judged. This group is made up of MS caregivers – we are a special group, different in many ways than other caregivers. I find my biggest issue lately is that I see the man I married slowly disappearing. His personality is changing, He is changing. I feel the loss, and try to overlook it, but its very hard. I support him in every way I can, and I try to remember that I am his wife and partner, not just a caregiver. But there is no way around it. This is a long and challenging road.
Have just found this site today! What can I say but “thank you”, I have been feeling guilty for so long feeling fustrated and some days even trapped. My husband was diagnosed 15 years ago but his first attack can be pinpointed to 1978. The cognitive issues are the hardest, never kowing which husband will be there when I get home from work angry, sad, demanding but all the time I know he loves me. There have been times that he calls me Mom. We have delt with most of the problems listed above but no one mentioned pressure or bed sores. Since he sits in one place so many hours a day without moving that is one of the newest systems the other is he losses control of everything from the next down becomes like a rag doll and it can last a few hours. Like other I can get angry funny thing is I get jealous when I see an older couple together walking or even in the grocery store debating produce, bet that sounds really silly but it is true.
Hi Donna! So glad you found us! No one should go through this alone, but that is often what happens.
Much of what you’ve written many of us can relate to. I especially can relate to the not knowing which husband you are coming home to. And I too, often watch older couples in envy. Even if they are bickering, but mostly when I see them holding hands and still enjoying each other’s company.
Your among friends here, Donna. Come back often.
Hugs, Linda
Hi Everyone.
I also just found this site to day. While searching for Caregiver classes. I decided I need better coping skills and I need to learn about resourses not yet explored. I’m at my witts end lately. I deal with all the emotions most of you you folk have mentioned. I do appreciate finding out that I’m not the only one harboring feelings of loss, frustration, anger, guilt and depression. It truly helps to know that. But for my own health I have decided I’m going to agressively reenter this fight and find time for myself. My wife was in hospital recently and I realized I was more relaxed, I slept better and consumed less alcohol. I felt great and guilty. Respite care is now one of my priorities.
My wife was diagnosed with MS 8 years ago but early symptoms appeared many years before. She recently was hospitalized for five days and given a course of intravenous steroids to battle her most severe exacerbation to date. She also spent 2 weeks in a rehab/nursing home. She has lost some ground. Her cognative abilities took the biggest hit. She now uses a walker to get around but leaves it all over the house. She suffers from dementia. The TV (her world) remote, microwave and K-cup coffee maker are now serious challenges for her. She forgot how to get in my truck, can’t decide where her feet or hands go. I could laugh at the show but I fight back tears instead. Our Sons and I used to tease her about the little things and make her laugh but those days are gone. Humor was the favorite medicine in the house for all of us. Not now.
Well I must run but I book marked the site. Thanks for a mildly depressing but oddly theraputic read. I am encouraged by the confidence and positive reinforcement in a lot of threads as well. Cool sense of comunity in here. I’ll check back from time to time if there are no objections.
Be well all
John
Hello all,
my 22 year old daughter was just diagnosed…with ms of course…
i am going thru hell..i just turned 50, suffer from depression and lots of physical/mental problems myself since birth. her father never gave a hoot and lives half a block away and didn’t come here yet…
i am unemployed and she had to drop out of college for this semester due to too much pain and unable to write, etc.
i am a complete hermit (even tried to kill myself in 2009)…this crappy disease is not a mood stblilizer is it…ugh
she is crabby and cranky and snappy and annoying constantly…help.
i am confused and unable to cry and help.
thanks
joanne.
Upright MRI Had a Major MS Breakthrough http://www.fonar.com/news/100511.htm
Where is everyone? Did someone find a cure for MS and forget to tell me. Behalf your all are too tired and/ or frustrated to get it out on paper. Well I understand tired is more tiresome when you can’t see an end in site. But let me suggest this. Never judge your future by your current circumstances. Hope has a life of it own. If you don’t feed it it will die. If you nourish it hope will turn into expectation. I encourage all of us to do whatever is necessary to keep hope alive. Leave MS and all it represents for a few moments, hours or even days if you can arrange it and steal away. Take a walk, go to dinner, see a movie, rent a hotel room and refresh yourself. You can be no good to anyone else if you martyr yourself. Stop the pity party and take action. Find a way to get through the day and rekindle your hope. Your expectation. Where is courage when its really needed. Here’s something to hope for. Take look at adult stem cell research. It has fasinating possibility.
My mom has had MS for about 30 years but was diagnosed 10 years ago. She has secondary progressive MS. She now lives with my family.She has mobility issues while limit her and also cognitive impairments that are hugely challenging. It’s been a few months since she’s been here and I am trying to figure out how to deal with it. I miss being alone with my husband and child and feel overwhelmed by the current and imagined future needs. It has been really hard to find emotional support for me as well as resources for my mother in general, but I’m working on it. Sometimes I feel I am going to drown in my own pity party and resentment–I wish I could get beyond it. Just have to focus on what is good and beautiful, and be thankful for all that is right. What a challenge!
Hey sorry you didn’t get an answer. We sometimes chat a lot on here and sometimes it’s kind of quiet. This is going to be really challenging for you. What you do have going for you is that you have your husband and I hope he can be a support for you. Try to steal moments with him and your child. It’s important. It’s going to be a lot of juggling. You’re going to need help so get busy and find that. Is there any sort of day centers that will take your mom for some of the time ( we had that but my husband refused to go to any :( ) I’m so disconnected from the US I’m afraid I’m not much help there. HEY! Can any one else give some tips to MSDaughter on finding help?
Hey don’t feel bad about the pity party. That’s usually why we come here. To vent to people that understand exactly what we’re going through.
Hope you check back in from time to time.
Thanks, Linda. I appreciate your practical advice and understanding words.
I think the hardest thing for me is putting my past with my mom behind me. Also, at this point, it seems really important that I try not to take on responsibility for her whole life, because she is not so cognitively effected that she can’t make decisions. (I would say in her whole life she has often made poor decisions, but not because of MS.) It’s hard because I know we’ll need to deal with the effects later of whatever poor choices (in terms of medical and financial decisions as well as potential failure to build up any social network to support her emotionally) she makes now. All the mother-daughter dynamics are intense for me. I guess this is my chance to deal with all the accumulated junk between us. Or build up more accumulated junk. Or both! :)
I listen to the show “on being” quite often. I found this show particularly interesting just because it deals with caregiving. It’s an interview with Jane Gross who wrote a book on caregiving a parent. She talks about some of the issues you mention here.
http://being.publicradio.org/programs/2011/far-shore-of-aging/
MSDaughter:
I commend you and your husband for having your mother live with you. Are you her full time caregiver? Does she have therapists and nursing staff stop by to assist? My mother lived with my sister up until about a month ago. She had some cognitive issues prior to needing surgery. After the surgery – while in rehab – the cognitive issues have increased to a point where she needs 24 hour care. We are both her “power of attorney” for medical/financial. After considerable thought and discussion – mom is now going to be living in the long-term care side of the facility. Yes, it costs a large amount (upwards of $6500 a month). Mom has enough money to cover it for several months – after that, we will have to sign her up for medicaid. It is the only way we can ensure that she is taken care of properly – 24 hours a day. I know you care for your mother and want the best for her. Always remember that your marriage, husband and child are your first priority. Seeing that your mothers needs are taken care of without compromising your marriage can be hard to do. Not sure this helps you any – just want you to know that you have taken on a lot and need not bare it alone.
I agree with Martin, It’s been pretty quiet here. Sooooo…. I just wanted to throw this out there. I just got in a debate and I guess I should have gotten all the facts first…so I feel pretty silly. Okay so this is the thing, I live across the pond and Pat Robertson’s statement about divorce and Alzheimer’s didn’t make it over here. So when someone just blasted his statement I kind of blasted back without knowing all the details. I don’t know about you, but Robertson’s statement kind of hit close to home and has been discussed here among us on this blog. Can you find a life and still take care of your spouse or significant other? I’m battling with this question. It doesn’t help to have people screaming “death do us part” and it’s abandonment. Has the controversy effected any of you the way it has me? Okay granted it was two months ago Robertson said it. Stuff does eventually get to us over here.
Linda:
I never paid much attention to Pat Robertson and don’t plan on starting now. It’s been more than 23 years since I promised my lovely bride ’til death due us part. I meant it then and still do. I just re-read Amy’s post dated Sept. 8th. Thanks for sharing the poem. I have it saved for when my wife is having her next really craptacular day. I hope thats alright with you Amy. Since I stumbled into this site in Aug.., the heavy load on my shoulders has been a lot easier tom carry. Thanks to all of you for sharing.
The quote you have probably heard goes ” there are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.” Anyone left out? My wife having MS has lead be to this fact. I do have to live with MS, it has to live with me. I chose to be kind and patient. I chose not to feel guilty. I chose to have a life where MS is put on hold. I chose to not allow strife. I chose to plan for a life without MS one day. I chose to expect something good to happen. What will you chose today? Merry Christmas.
This has been an awful day and out of desperation I decided to see if I could find anything about dementia and MS. We all have long stories but I blame myself so much as I am a retired geriatric nurse and when I met my husband and married 9 years ago I knew he had MS. I thought that someday he might have a wheelchair or physical needs I didn’t investigate enough nor could it be predicted that he would develop dementia. Over the last 6 years its progressed and even though he can do all his own ADL’s I can no longer leave him alone because I don’t know what he will do or say next. He has had a complete personality change and today he scarred me with his irrational thoughts and behavior. I have just started working on getting some respite care through the VA. I am so grateful that we were able to prove that he was diagnosed at age 23 within a year of discharge and has been given 100% disabiity. His dementia and behavior is so different from that caused by Alzeheimer’s. One day we can be having a good time and are pretty “normal” and the next day its like he is another person. Actually its more correct to say minute to minute as it can change that fast. He has become bigotted, intolerant and someone who I don’t like. He has not directed his rages at me but he can slam doors and objects. I know he has to be terribly frustrated, he has an MBA but can’t take care of finances. I can deal with all the things that get broken or lost, messes he makes etc. I have had to with draw from my active life and for the most part its ok but when he becomes this ugly, nasty person I just want to run away. Then I feel so guilty thinking about the lovely sweeet guy I fell in love with.
I talked to his primary doc last visit and he suggested a caretaker’s group but I can’t get out to do that. I know all the things that will be said as for over 20 years I was the one giving advice but its my world now and I feel like I am running out of patience and hope. Thanks for listening. Deep breath-tomorrow is another day.
Lee:
I am sorry you are feeling so overwhelmed. I am very glad that he is getting assistance thru the VA. Did you know that the VA has their own MS Clinic in Seattle, WA? Is it possible that you can get your husband’s doctors to send him there for a complete evaluation? This not only might help him — it would also give you a day or two of much needed respite. The VA here in Idaho has been very helpful for my husband as far as his MS and the medications. They have even taken it upon themselves to learn more about the disease and how it affects all areas of life (ADL’s, cognitive issues, walking, even anethesia problems —-epidurals and blocks can cause issues, etc.). Please see if you can get someone to come in for a little while to assist you with housekeeping and an hour or two for you to get away (get your hair done, go to lunch with a friend….). I don’t think that you would ever be expected to put yourself in a dangerous situation due to someones disease and cognitive issues. Did you ever discuss how you both felt issues should be dealt with? Possibly try to put yourself in a different frame of mind for a moment and determine how you would deal with it—say – if your husband didn’t have MS and he were in a major accident that caused these sane concerns, fears and issues. Talk with everyone that you feel comfortable with on this and remember – you must take care of yourself also. Good luck and God Bless.
Lee,
I recognize much of what you wrote. If you read back in the thread you’ll see we’ve discussed this on this blog. What I found disturbing was that none of my husband’s doctors said anything about this. Even when I told them that he was having personality changes and problems remembering things. For years he had me convinced I was the one losing my mind.
Physically, my husband now gets 24 hour care. Mentally, he has to be reminded many times about what’s going on around him; he often doesn’t recognize his children or remember that they have grown.
I’m on the other side of this guilt you’re talking about. My husband is now meek and pleasant to people around him. I’m trying to forgive the man that wasn’t so nice a couple of years ago. I’m trying to sort out in my mind which was my husband acting out because he couldn’t handle his MS and which was the MS itself. So many emotions to deal with while we also have to deal with the daily demands MS puts on us.
So I guess what I’m trying to say is, you’re not alone in not knowing about this side of MS and if you didn’t know it existed you wouldn’t have been able to find it anyway. It’s not in the normal coping with MS information that is provided for us.
I agree with Pam, that you perhaps should look at it from another frame of mind as to how to deal with this. Do not feel guilty about that you have to deal with this new husband. Your sweet husband is still in there, but he isn’t able to help you deal with the one who is scaring you with his actions. Believe me I know. This is really tough to do. I’ve been dealing with this for years and I haven’t mastered it totally yet.
Remember that you matter and your well being is important too.
You’ll be in my thoughts and prayers. Hugs.
Thank you for your reponse-it did help. The nurses at out VA have been very involved and helpful but I can’t say for same for the neurologist at this clinic. I am biased-I am a retired nurse but its my very subjective observation that some doctors don’t want to ask the questions that will take them deeper into their patients sitaution. If you ask my huband how he is doing he will tell you just fine -end of conversation. If I didn’t bring things up as his advocate there is no telling what would happen. I feel so sorry for folks who don’t have someone to advocate for them.
I am planning to call his primary tomorrow and let him know about these increasing “flashes of agitation and anger.” Today he is fine and senses that I am not happy and is trying to be nice. Something that was brought up was that at times I have a hard time trying to figure out what is just his “guy” stuff and what is MS. I feel like he uses that and I know that is where some of my resentmnet and frustration comes in. I’m just being honest and I am trying hard to move past this.
I just got a membership at our local Y an already I can tell this was something that I needed to do. I am trying to avoid having a knee replacement and getting into the warm pool for exercise definietly helps which in turns helps my mental status. Today is a better day and I am grateful that all of you are here to listen. God bles you and I hope 2012 will be good for you!
Lee, the behavior you explained is what my daughters and I call my husbands “temper Flares”. Generaly they are short lived but can come out of nowwhere and just as soon be gone. It is hard but you just keep putting one foot in front of the other. Know you are not alone we get it and most days I have found that helps greatly. Keep writing we will always support you on those days that are not easy. Donna
I actually stumbled upon this website by accident, I am very glad I did. My husband 43, was diagnosed in July of 2011 with MS, after we were told he had brain tumors. After 3 days of crying because we thought it was a death sentence we were informed that it was MS and not cancer. We were so relieved it wasn’t the big C word, and he wasn’t going to die, its only MS! Yeah well MS has completely turned our world upside down in 5 short months! It’s been a hell ride that neither my kids, our families’ nor myself saw coming! Honestly, I am not sure what is worse, the grieving process that goes with losing a spouse or parent or the ongoing grieving process of watching our lives crumble before our eyes and still grieving the man that used to live in his body? He has 4 lesions on the frontal lobe, 1 on his brain stem and one on his spinal cord, apparently the MS had gone undiagnosed for almost 8 years so its pretty progressed, hence the instant cognitive, personality warping, mental changes that have occurred with him in the past 2 years. I honestly have thought I was nuts and off my tree because one minute life is good and in a flash he morphs into a complete jerk that we don’t know! Before he was diagnosed we (me, kids and our families) thought he was using drugs, because of the complete lack of decision making, slurring, staggering and small accidents he had. WE were so wrong!! It was the MS eating away at his brain like termites!
After reading all the comments about the personality changes I don’t feel so alone. I probably have not handled this whole situation as well as I could have, I let him push my buttons when he runs his mouth and an hour later he is has forgotten about it and I am still FUMING! The last few years have been difficult for us, dealing with a boat load crap that got tossed our way and the straw that almost broke this camel’s back was the MS diagnosis. But this camel will persevere for yet another day.
I found this board searching for “MS effects on families” because I am in the process of assisting our 17 years old son who is a Sr. in High School apply for the MS Society scholarship. He has to submit an essay regarding “how MS has affected my life” and we both know how it has affected our lives but putting pen to paper has proven difficult.
Kimmie see down below on Lane’s post.
I have been with my husband for a total of 12 years. We have been married 4 out of those 12. I found out about his diagnosis about 6 months into our relationship. I didn’t know a lot about the disease at that time but my world changed that day. It became a blur of conferences, hospital visits, books about MS, etc, etc. When we got married, I understood the commitment I was making to both him and to MS. I understood that there were going to be difficult times, stress and heartbreak. A lot of people tried to talk me out of it but I didn’t listen to them. To me my husband wasn’t a disease or a burden, he was my husband. He took care of himself, worked out, had a healthy diet and had an overall optimistic attitude. He never let it get him down even during his bad days or during a bad exacerbation. About 3 years ago, he had a relapse and there was extensive disability progression. His neuro didn’t think he would be able to walk on his own and he had was in the hospital for a month with intensive physical therapy for a year. During it all, he worked and went about his “normal” routine but I noticed a difference. He no longer had the drive to exercise or do any sort of memory games. He would often say “What’s the point?” when I would ask him why he wouldn’t the things that he did before. His whole attitude changed. We have been dealing with this change for about 3 years now and it is incredibly frustrating. My husband does not need a cane, walker or wheelchair to get around and he is actually quite independent. He needs help in shaving, cutting meat, buttoning shirts and things that involve dexterity but you would never know that he was mobile with the way he acts sometimes. He complains about walking to the gym at our apartment which is 2 minutes away so I bought him a bike. He complains about the bike, the weights we bought him, the calendars, resistance bands, everything you can think of. It feels like I’m pushing against a brick wall. His doctor even said that for many of his symptoms, simple exercise will help manage tremors and muscle stiffness, so here came yoga. Nope, doesn’t want to do it.
So in all of this, I have stood with him and I don’t ask for anything outrageous. I just ask for him to take care of himself and to let me help him take care of himself by exercising with him but nothing. We have a good support group of friends, who can’t really understand what is going on, but who also respect that his disability has progressed and he has aggressive relapsing-remitting. My girlfriends and I like to have the occasional Girls Night and so we’ll go out or meet at someone’s house. However, my friends no longer come over to my house. My husband will interrupt every conversation, will interrupt whatever movie we are watching, will ask to drive somewhere (he can no longer drive, docs orders which he knows). If I go to someone’s house, he gets upset with me and says that I’m abandoning him and my focus should just be on him. I have tried to explain that sometimes I just need to get away and take a breath. I never go out and leave him hungry or cold or anything. He has even spoken to his family about it and they agreed that I was a bad wife who was ignoring him. Am I in the wrong for wanting some time to myself or to want to have friends over to my house? Plus I am starting grad school this semester and I am afraid of what will happen when my free time will disappear.
Also, its not like he never leaves the house. We go out to dinner with our friends as a couple, out to eat together, and he has weekly lunches with his family. Just wanted to add that to my rant.
You’re not ranting, Lane. :) This is a safe place to let go of some steam.
Dear Kimmie and Lane,
First of all welcome to our little blog group. I’m sorry no one on here has acknowledged your posts. Sometimes there is lots of activity on here and then there goes a long period of time where it’s quiet.
The problems you addressed in your posts are common ones, but something they never bring up at the doctor visits and sometimes not even at support groups. I’ve been married to my husband 28 years. He was diagnosed in the late eighties, before we had kids. After all these years I’m still trying to come to terms with that he gave up way too early, I’m also trying to forgive him for the mood swings and the “instant jerk” syndrome. I guess what I’m trying to say is you’re not the first to experience these things with a spouse who has MS.
I’m not sure what the answer is, but I firmly believe that the family needs outside help dealing with these things. I found out recently that my husband’s neurologist’s office had a family therapist on staff, but it was never offered to us even when I brought up the mood swings to his doctor. I probably sound like a broken record to those who often read this blog, but I can’t stress enough the importance of making sure that we as caregivers are getting the emotional support we need and that our kids are. I had no clue the damage my husband was doing to our daughter. When I wasn’t home I guess he used her as an emotional punching bag and she never told me. Once I couldn’t take care of him anymore, the new issue to deal with was having assistants in our home 24 hours. The lack of privacy was unbearable for my 14 year old daughter. Okay… so my point is… get the help you need NOW to deal with these issues because it doesn’t get any better. It gets worse! I really think if we had gotten the help we needed we wouldn’t be in the mess we are today. So please please please find a counselor or family therapist to help you, your spouses and your kids through this. And NEVER doubt your sanity!!!!
Hugs to both of you!
Thanks Linda! Its one day at a time right now, in the appeals process with SSA & I have to a find him a psychiatrist that specializes in pharmacology because he is on too many pills!! that treated all his symptoms prior to his diagnosis..
Sat down at my computer and typed in MS Caregiver and found this page. Alot to read but i did just read Lane’s post and felt a bit of relief. Wow, someone else that is going through some of the same things I am. Did I finally find a place where people don’t give me the “deer in headlights” expression when I talk about my situation?
Cheryl
I think so, Cheryl … welcome!
Cheryl,
You are not alone! Today has been one of those days, where my husband has pushed every last button he could just to be mean… and I let him get to me, AGAIN! I told him point blank that I hated him and what he has done to my life! He told me the feeling was mutual.. He doesn’t even get it.. at this point I am thinking that I am the one not getting it. In 22 years we have had our share of crap, and I am so mad that he gets a free pass on being a dirt bag because he can!! When EVERYTHING falls on me and my mother in law… My kids are 21 & 17 – I can walk away from this hell hole and start a new life, but I couldn’t do that to my kids or my mother in law… Before I go into a long winded babbling boo hoo of how bad my life sucks right now, I just want to tell you that you are not alone!
I am so sorry, Kimmie. You obviously need some help, is there any services available for you to get respite care?
Talk to your doctor if you have to, go to the county social sevices and see if you might qualify for assistance. Maybe someone here can suggest something. My husband goes thru “spells” where he is just horribe and then he snaps out of it and tells me he knows he couldn’t make it without me and that he knows he can be a Real A__hole” I use to say , “I know you don’t mean it.” Now I say, “yes. you are!” I have made a decision that I will not let him take my mental health and well being away from me and that when I can’t deal with it any more he will have to go to a facility. Its different for me though, we haven’t been maried as long or have the history that you do.
The first time I wrote here I got some amazing and kind words that helped me get through a really bad spell. I hope that you and the other caaregivers here find the same sense of comfort, just knowing you really are not alone.
I feel terrible even complaining! My husband is a good man for the most part. He is a “kind” complainer, if you know what I mean. He tells people how he couldn’t do it without me and that he knows I have my hands full, but in the next breath makes his little comments. For the longest time he had his daughters thinking I was neglecting him by not providing enough water for him (he has only drank bottled water for over 30 years). When in fact he always had water but wanted more. Now his water has to be limited because of COPD and Left Side heart failure so I have to restrict him a bit. That along with one daughter who only wants him on natural products which I have lost alot of faith in those. My husband has always been very demanding in a “momma’s boy” sort of way, if you know what I mean. His daughters will never feel that I take care of him as I should yet every minute of every day and night he is the first thing I think of. I still work but have gone part time so that he is not home alone any longer than necessary. This has made paying bills a challenge but we get by by the skin of our teeth most months. I know it is coming very close to my not being able to work at all, and I am fine with that as long as I can find a place with rent cheap enough to get by on his SS. That has been another challenge as I must move closer to my parents. My mother has been diagnosed with Early Stage Alzheimers and my dad is a bit overwhelmed and it would take so much stress off of me to just be closer to them. Now I have to drive 45 minutes to be with them for a visit. I need to be where my parents and husband are within blocks of eachother and that will reduce my stress level tremendously. They live in a small town and I have been waiting for almost a year for a place that will work for us to become avalable. Patience, patience. I want so much to be able to push my husband out the front door in the wheelchair and go for walks, etc. Now we have steps and I must have help to get him out so we really don’t go anywhere together.
I get very frustrated sometimes at how our lives have gone. Our kids are grown and these are supposed to be the days we run around together having fun. Shopping, visiting grand-kids, going out to eat, etc. I do most things alone, which is ok for the most part. It’s hard when things need to be repaired in the house or it’s freezing outside and I have a bunch of groceries to carry in, recycling to put out, etc. I always feel like a terrible person complaining because my husband is the one that is sick and I should be grateful for what I have. We do have a good relationship but nothing is perfect and that is life. I feel I may be rambling now, sorry. We have a nurse that comes in twice a week to check hubby’s vitals, etc and she will be here soon so I better close for now. I am so thankful that I found somewhere to vent where people won’t judge me or look at me like a monster. Thank you!
Monster?? I think not! you are in a tough situation… I would not be able to make it without my MIL or my own mother!! seriously, I cant drive much because I was diagnosed with a form of MD in 2009 – inherited so not a huge surprise, will probably eventually cripple me physically, but not mentally.. honestly I am not sure whats worse… fighting to pay bills monthly is getting really old.. and I have lost my rock, my husband has become another child almost because HE DOESNT GET IT!! my mother and MIL (which we have lived with for 20 years) have helped in every sense… rides, bitching…etc hang in there, you are not alone… and you are not a monster… if your parents and hub need you, you need to enlist help so you can share some time with both – you are the one that will regret it… if you dont.
Hi! Thought I’d pass this along to our male caregivers. It’s talking about Alzheimers, but I think it applies to all male caregivers.
http://www.caring.com/blogs/fyi-daily/the-special-loneliness-of-the-male-caregiver?utm_campaign=fanpage&utm_medium=social&utm_source=facebook
Hugs!
i am going to just jump in here. I have recently become very attached to a man with ppms. he is the most positive inspirational person i know. walked away from a career 12 years ago to focus on taking care of himself, being there for his children while his wife walked away from him. he is says he can truly appreciate life and even the tiniest accomplishments (like putting on his socks) because he had it all and then lost it all.
he wrote grants for other wheelchair users and was very successful at this. unfortunately a rotator cuff injury, as he fell out of is van left him unable to drive and thus not able to do all the manual work he did with wheelchairs etc. this is a man who mows his lawn, built raised bed boxes and raised deck..all from his wheelchair. he is truly inspiring.
i have spent time reading through many many posts. i am really afraid. from the pain children can experience to lack of or no sex, to what if he becomes angry, what if i become angry? he truly has hope, because it happened once before, that if everything falls into place he will walk again. i feel pressure that i am the last thing he needs in place for this to happen. i find myself thinking about a future with him..but what is that future? he is so articulate now but what? when that disappears?
i appreciate the discussions from those of you who were married prior to an ms diagnosis…no more walks, single income now, no retirement. i have been on my own now for 2 years from the end of a 24 year marriage..i mourned those things you speak of. is it possible for me to not have those resentments?
if we lived in separate residences as we do now, could it work.
i know i am all over the place and i am not sure what i am asking.
lise
I wish I could encourage you to go on with your relationship. I remarried after a 34 marriage ending in divorce. I know how wonderful it is to find someone who loves you and thinks you hung the moon but if I had a crystal ball I wouldn’t have remarrried. I thought I knew what I was getting into. Unfortunately this is a horrible disease that has no predictable outcome. Each person reacts and progresses trhough their illness in a different way. Take your time and be careful. I am now grieving every day for things that we have lost so quickly. I am in a better place today as we were fortunate to get some respite care-more my need than his. I love my husband dearly but at this age its so very hard to take care of myself and meet his needs too.
On the other hand this marrriage and relationship is Heaven compared to the 34 years of the mess I lived through. I just pray for strength and partience and vent here when I need to. Its a complex situation and no one can give you advice as we aren’t walking in your shoes.
Thank you Lee. Yes is very complex. Not sure how it will all unfold. I cannot change how i feel emotionally about him, but these posts are very helpful in that i can keep a clearer perspective. My situation is different in that I do not think we would ever live together. He seems to have it all planned out as to the progression and the levels of care he will need along the way. This to me seems very reponsible, forced as survival because his wife walked on him 12 years ago. I am amazed at the creative yet mechanical mind he has and devises all these props to help him accomplish everyday tasks. Such as a crochet hook to help button a shirt. Perhaps that is a common prop, i don’t know. He is very very determined.
I will take in one day at a time, maybe my role in his life is to learn and that there are much larger things in store. I am attached but will be cautious.
Not sure if it is worth sharing some of the nutritional findings that are working for him. He commits an enormous amount of time to cooking his meals each day and not just because it takes him a long time to actually cook it.. Photographs them and documents them. Being a vegan makes the protein piece a bit tricky.
Yesterday his Doc recommended he start adding Carnosine to his supplemental regime.
Carnosine is a small molecule composed of the amino acids histidine and alanine. This dipeptide is found in relatively high concentrations in several body tissues—most notably in skeletal muscle, heart muscle, skin, stomach, nerve tissue and brain. The exact biological role is not well understood, but many studies indicate that carnosine has antioxidant potential. Carnosine may also act as a neurotransmitter (chemical messenger in the nervous system). Carnosine has been called a longevity nutrient since laboratory studies on tissues indicate that it can delay senescence and provoke cellular rejuvenation in cultured human fibroblasts. Carnosine has been called the anti-aging and anti-oxidant dipeptide. The exact role of carnosine supplementation in human health is not clear at this time but carnosine appears to be a promising nutrient with much potential.
He has also found a supplement that has helped greatly with leg strength..if anyone is interested I can find out what that is. Going forward knowing, of course, that MS is highly indivualized.
To close, in just the 6 months we have spent together, I can tell you I have enormous respect for all that you, as caregivers go thru. I feel inadequate to express or even speak of the subject because I am just observing him. He requires no help from me yet, unless there is a time factor.
As I read thru your posts, i try to imagine if my life partner was handed this diagnosis. But yet it is a diagnosis handed both partners and family members.
Lise
Hello,
Well, last night I found this site (exactly how, not sure) and spent the evening reading the last 194 posts. I read as much as I can about MS. And I couldn’t wait to open my laptop tonight to return here to comment but now finding I don’t know how to start.
Here is my situation; My Momma has MS, she is 72, my father is 74. (she has had MS 18 years now) My father is a saint I have to say by the way. He has defiantly done all possible to make my Momma comfortable. Without EVER complaining about anything!! I spend about 8 hrs a day there to take care of her personal needs, PT, ect.ect.
Although we say i am her caregiver, my dad really is. Any way to my point, I would like to find a site,blog,forum, (I have found some on WebMd) that relates kinda to the relationship I have with my mother, because i know there are more families in the same situations.
I have been having some trouble with my Momma recently with the usual: not wanting to do her PT.,no bath, my bum is fine, leave me alone. It hurts me so much to see her in pain, or uncomfortable. She is really having trouble with spasticity at this time (now is not the time I guess to go into much more?)
But, I just wanted to say thank-you for letting me read all the post’s on here.
Angel F.
Hubby was in the hospital so wasn’t able to get back here until now. Adding to what has already been said, as much as I love my husband, there won’t be another. If things ever happen where I am alone, I will never be in another relationship. I will cherish the one I had and spend the rest of my life taking time with my grandchildren, etc. I would be terrified that I could end up in this situation again, so even missing out on another relationship isn’t really missing out on anything for me.
Lise, maybe things will work better for you because you will not live together. Not really sure. If you are already involved with this man, it would be hard to impossible to walk away, from my “hearts” perspective anyway. Walk slowly. It sounds like he is aware of the frailty of the situation also and that will help the two of you figure out how to handle this.
Angel, it sounds to me like you as well as your father are her care-givers! I am sure your father is so very grateful for your help!
my husband of 10 years, 44 yrs old, was diagnosed 11 years ago. we now have two small kids and within the last 5 years he has gone from using a cane to using a walker in the house and scooter on outings. he has bladder problems so he catheterizes and always needs to be near a bathroom. some days, like today, it just hits me like a brick. i realize how utterly isolated i feel as a person and how isolated we are as a family. the posts about envy ring so true. wow, look at that family WALKING together – this is what i am envious about??? this is supposed to be the best part, we’re young, we have young adorable children. yet i find myself incredibly depressed sometimes because i don”t have anyone to talk to who really understands. people ask me how i am doing once in while but no one really understands my answer. whatever energy i have left after taking care of what my husband needs i use to make my children’s lives as normal as possible. it’s hard and heartbreaking. and all this while i watch the man i married slip away. i am a realist and never sugar coated my future when i was young. i knew marriage would be hard and raising kids would be hard and growing old would be hard….but THIS? you’ve got to be kidding me! it’s always been hard for me to take care of myself but now i am slowly understanding that it is essential. thank you to all of the wise and honest words here. i agree with many who have said this is all depressing but oddly comforting. that’s definitely where i am at.
Hi Sarash!
I recognize my situation in yours. My children were also quite small, 8 and 3 years old when my husband started needing to use a cane. I wish I could offer words of comfort, but there are none except that you are not alone.
It breaks my heart to see others just entering what I’ve experienced for the past 12 years. We don’t always want advice, sometimes we just want to vent, but just a few things that I had wished someone had told me at the beginning (whether I would have listened or not is another story :) )
I wish I could tell you it’s going to get better, but it’s not. It only gets worse…. Soooooo…. Prepare now. Stake out time for yourself during your day, because you’ll need it be sane and to remain positive for your husband and children. This is not a luxury, this is a necessity. Find out where you can get help now, because when you need it you’ll be too exhausted to look for it. Be diligent in recognizing when things get to be too much so that you can get help before you slip into burnout. And finally, so often the focus is on the one with MS, remember that you’re important too. MS is something that the whole family suffers from.
Hugs!
Linda
thanks for your words linda. it is hard to remember all of the things we are supposed to be doing – like focusing on how our kids feel as well. it’s also hard for someone like me (who like to see the glass half full) admit that things ARE going to get worse in terms of his health if he continues the path he is on. your note, and everybody’s opinions on here, have reminded me to make time for myself no matter how mundane it might be, just to gather myself. and i know that i am not alone – but being the only family dealing with this in our community, it often is so isolating. that is where venting comes in handy i suppose…
I see my life in your words Sarash. I was only 20, he was 23, when the love of my life was diagnosed. It’s been almost 19 years now. I didn’t have a clue what I was getting into. I am very blessed to have 2 beautiful kids with my husband. I too feel alone and isolated at times. My friends have no idea what we go through on a daily basis. His friends from high school and college drifted away because they didn’t feel comfortable with the situation. I feel so bad for him. Our lives are dictated by his MS. We try so hard to make things as normal as possible for our kids. Creating “normal” is exhausting. I’m glad I found this site by accident and have been able to read other caregiver’s stories. We all need to know we aren’t alone.
Thanks for your story.
Becki
Very good advice, Linda. Thanks!
and thanks for yours. i also feel bad for my husband since his friends do not understand what he is going through and new friends seem to not want to get close since he is so “different”. i think recently i am just trying to get used to the fact that we won’t be the ones with tons of friends to hang out with. i am blessed to have a family too and i am always reminded of that especially since my kids are so young (and haven’t started talking back to me yet!). but i am also reminded of how we are different because of our situation. every time we go for a walk…every time we go somewhere and have to look for ramps and bathrooms…every family event where dads are chasing their kids around…it IS exhausting. i have had to draw on an incredible amount of strength so seeing posts like yours and others makes me just a little bit stronger.
First I would like to add all of the discussions have been informative, enlightening and scary. I have written before with just a description of my situation. All of our situations are unique. I have begun a relationship with a man w/ PPMS. He is in a wheelchair and lives completely independently. I have so many feelings running around my head. On the one hand I feel we can do anything, go anywhere do it all. But i know that is foolish. He drives that desire to any and everything. He failed on a transfer the other night, i of course could not pick him up. 991, rescue squad, back in the powerchair under 10 minutes. TA DA nothing to it, he said. But I know that it will change. What happens to the one you love, you can’t take care of him.
I express these concerns to him. He in his positive way states, none of us know what will happen, to you to me to the neighbor next door. One day at a time.
This thinking works for awhile for me. We do not co habitate together which works just fine. But i can see it is becoming so tangled. So many questions. Sex is good now but what when it is not? He can do everything on his own now, but what when things start to slip away? Who steps in…me? Am I committing myself without actually saying it. Frank discussions are needed.
There are no answers. I must be nuts to consider a relationship with this man when it will just continually get worse. I read your words. I am 46 he is 50. Is this how my life will be? Is fine now but but but…
hopelessly in love with a man who will slip away.
Lise
Lise
My husband has MS we found out on our 15th wedding anniv.and we cried and then we decided to rule the MS, we will be married 43yrs.come Oct.He has ppms and some days are good and some bad but now he is having more bad days than good it is difficult many days to see the one you love go through because MS is a family diease and people don’t understand MS at all.I’m not trying to discourage you but you have to prepare yourself for later when he isn’t as active as himself and he needs you but there are different resources out there to help. When I found out Dan had MS I tried to find out everything I could on it, if you have strong feelings and are willing to stick by him in good times and bad, then do what your heart tells you.
Update from June/Aug 2011
Pleased to report that my husband is not sitting at home feeling sorry for himself anymore. He volunteers 3 times a week at a homeless shelter and the public library. He even gets a small check from a disability employment agency. He’s happier and more active. I’m so grateful to God for this progress. He still receives the monthly Tysabri infusions and takes medication for tremors (tremor medicine doesn’t work). There are still days when his legs aren’t strong, but he tries to push through it.
We will continue to praise and thank God and I encourage you to try to do the same.
On a separate note…Why don’t we try to organize a “meeting” of some sort with our families, (for anyone who is able to travel). We could try to pick a central location and have a banquet or something with a guest speaker with knowledge of MS and there could be separate sessions for caregivers. Just dreaming…but I think it would be great!
Marchelle!
This is excellent news!!! Wow! Something positive being posted here!
It would be fun to have a meeting, but I think in our situations it would be difficult. I find that I will be on that side of the pond in August. If something develops. :)
//Linda
I’m getting ready to lose it. As my wife heads down the road of progression the arguing intensifies. Anytime she senses that I have feelings of resentment, anger, isolation and frustration i hear the comment, “at least you can walk.” I can walk yes – but I work three jobs to make up for her lack of income and retirement – I will newver be able to retire – I’m a “yong” 59 and have a wife that functions like a 90-yr old – it’s not her fault – it’s just a fact – no sex in our relationship – I’m supporsed to live with that I guess – and absolutley zero support from family and friends – no one cares how this disease impacts me. I should have left YEARS ago.
Sorry to hear your struggling with it all. I’ve already been down your road and let me tell you, it surely is one of the most challenging things I ever faced in my life. I had the choice of leaving when my husband was diagnosed years ago, but chose to stick it out. Just before he passed away recently, he said ” you know what, you so deserve a better life than what I have put you through”. Now that I have spent years being a caregiver to him, its really hard to pick up and continue on. No matter how hard you try to make things good, we tend to shut ourselves out from the rest of the world, because no one wants to listen. And yes I must honestly admit now, that had I known then what I Iearned from this disease, I think I would have walked. One must remember, we are all visitors here on earth and all for a short time, You will never be able to replace all the happiness your missing and I now realize how much I have missed. Maybe I sound heartless and cold, but facts are facts ! He’s gone and what have I been left with! A worn body & soul !
Hi James,
I was amazed to read your comment. I appreciate your candor. Your situation mirrors mine. My wife has had MS since 1983, and is progressive. She has severe cognitive with moderate to severe mobile problems. I just turned 60 and my thoughts are exactly where yours are. We havnt had sex in years and the family support has been nil. In fact the worse she gets the further away her family and mine get.
My family support system is basically my daughter my wife and me. My extended family although there are some pretend that my wife is fine. In fact if I hear one more of them say how great she looks I’m going to jump off a bridge. I think they say that to get themselves off the guilt trip. I don’t mean to sound synical; but that’s how I feel. I’ve tried everything with them but there off to themselves unless they want something. Fat chance thats happening anymore, I’ve wise up.
Anyway its good to hear that what I’m dealing with isn’t unique, lets stay in touch. By the way I’ve decided to take care of myself so i can take better care of my wife. There are two things I’m currently doing to achieve that goal. Believe it or not I decided to take up improv, and I work out with boxing. So far the improv has kept me laughing and the workouts help me get the wife off the floor. So on a positive note they are working. Lets stay in touch
Keep the faith brother
Rich
Rich,
I wrote you a long reply but lost it before I posted it. I’m too exhausted to rewrite but I just want to say thanks for your reply. I think our situations are similar. I’m turning 60 in August. My wife appears to have entered the progression stage and seems to be rapidly losing most of her walking abilities. We are both so frightened and alone. As you know most folks – family and friends – don’t even ask how she is doing. And of course as the spouse – there is absolutely no interest in how I cope with all of the issues we face. Please let’s stay in touch. I really need to be communicating with husbands who are trying to cope with MS from the caregiver’s perspective.
I know what you are going thru James my husband has ms and the pain has been awful for him but I have been paying for his hurting, he is agrumentive and he is right and I’m wrong and he tells me that he swears I have Alstimers I don’t I have fibermyalgia that is very painful and causes memory loss and he doesn’t believe me and if i am not feeling good I get you always have something wrong with you,I have to see my cardoligts because I have been having lots pain and heaviness and a headace for 3weeks now and numbness he wasn’t happy because he said to me my husband why do you need to see him you are doing fine and when I told him no I haven’t he told me again you always have something wrong.my family and his don’t know what we all go through as caregivers with our spouses latly I just want to run away and not come home we don’t have any sex either not any hugs or very few kisses if any and if I tell him I love you he says why, I see a counsler that helps some but it doesn’t take it all away the hurt.
Kathy,
I wanted to acknowledge your posting. Please know that I’m thinking about you. I wish I could give you encouraging words but I don’t have any to give at the moment. Just know that you are not alone.
It helps a lot James to know that there is other people and caregivers that know what it is like sometimes for the caregivers and Linda is right about if someone would just ask how the caregiver is but when you start to tell them they change the subjuect.I just want you to know James thanks for answering my e-mail.
Hi James,
Oh, I am so sorry.
I know how exhausting it is- not just the work, but the worry, the looking ahead, the guilt at having wishes for a more normal life.
Sounds to me like you are both feeling frustrated, both feeling guilt. Is there any way that the two of you can get into counseling? My husband has PPMS, and we got into counseling right away. There are going to be a lot of changes, and I am afraid of getting to a point where I don’t want to say how I’m feeling anymore- out of guilt, anger, whatever. It’s not his fault that he has MS. But I’ll have feelings of loss, helplessness, anger, etc anyway. She just helps us to talk about it. It’s such a relief to not try to hide how I feel all the time. If your wife is anything like my husband, there are a lot of feelings of shame, sadness, horror and guilt there too. He hates being dependent, though he tries to accept it graciously. Maybe you each need your own counselors.
I don’t know. It is just so much to manage without support. Big hugs.
This is my first time here- is it a pretty good place? It looks like it.
CeeCee
I have only recently found this site …. how refreshing, yet deeply saddening to hear so many other stories like my own. My husband has PPMS and his physical and cognitive progression has significantly advanced over the past year. We are both only in our mid 50s (although I feel so much older), and while many of our friends are experiencing some of the richest times in their lives as couples, empty nesters, early retirement, traveling, and grandparenthood, we are in a very different place in our lives. I work long hours to keep us afloat, and when I relieve the caregiver each evening, I become the full time caregiver for my husband each night, each morning and each weekend. I miss being a wife, both emotionally and physically, I find myself feeling lonely, even when he is there. Our conversations have become hyperfocused on him. There is little to any physical contact between us, beyond my assisting him with personal care. Family and friends provide very limited support, and seem to avoid contacts as my husband’s MS progresses. The problem is, as much as I try to accept this, I can’t help but feel angry and even resentful, and of course, then guilty about feeling this way. So now what???? I keep expecting to have an epiphany… it’s been almost 15 years and I’m waiting …..
Hi Carol, I wish I could write something here that would help you. I can only say that you’re not alone, but I think you’ve realized that after reading the posts here.
I recognize a 100% of what you posted here and went through it myself… especially waiting for the epiphany. One day it will come. Be prepared to recognize it, grab it and believe in it with all your heart.
Hugs, Linda
Bonnie,
I read your comments and I totally agree. I am a 43 year womarn working full time taking care of three preteen boy. My husband has devic’s syndrome diagnosed 6 years ago. He does occasional miniamal cooking for the boys, does not help me with any housework, boys homework or activites, bill groceries even xmas preparation or shopping for the boys. He doesnt leave the house. He is always so mean unless he is working on his old cars or models which by the way he can do that. I am so lonely and can not see how I can get out of this situation. I am so lonly. I have no one. I feel like my life is wasting away. I try to talk to him about loneliness and all he says is lonly I am lone you dont care about me. Between working the kids and houe things I am running but in the evening he sleeps or sits on the computer. I fall asleep. I do ask him to go to dinner anything he says no. JHe continues to say you dont care about me I am sick dont you know. I want to leave and have told him that but he says no you stay I dont want the house but wait to the kids get older. He is not serious as he can not function on his own. He will never leave. I am not sure how much more I can take. Please does anyone have any advice.
It’s been so long since I posted this extremely angry and negative comment. I’m truly sorry to expose all of you to it. I’ve come to terms with things a little more.
Let me try to be more positive. My wife is continuing a very slow and progressive downward trend but is actually now teaching art at a local college and trying to hang in for another 1-2 years. Walking is becoming more difficult but we keep focusing on the fact that many folks never make it to age 61 and a WC is not the worst thing in life to face. I’m taking her on a trip to Maui in a few weeks to celebrate life. May be the last trip of that distance that I can manage alone. It must be quite a site to see me help her into and out of the water on the beach but we manage. Folks probably assume that she has been drinking heavily.
Does anyone know of cases where someone with MS for 40 years has been able to keep moblie until their mid to late sixties? The MD is just being so vague and not willing to give any hope or examples of folks that age with MS who keep pushing through with walking and self care. We really need an example to cling our hopes to.
I love and respect each one of you out there. You are all loving and caring people who have challenges that most folks cannot begin to comprehend. My mixed emotions continue….anger, guilt, lonliness, frustration……but the hardest one is the envy i feel for my friends who are living a “nomal” life and looking forward to a happy and fulfilled retirement. I’m dissapointed in myself that I just can’t let it go.
James,
Sorry for the late reply. I think life tends to run away from all of us on this site. What’s happened since you posted this? Have feelings settled down a little?
We’ve talked about this before, having to deal with the lack of intimacy. Being faced with a barrage of negativity from the ones we’re caring for and absolutely no feelings of warmth or love. These things are vital for us to remain healthy.
I am just going to share here that I have taken that step and found someone that gives me the things my husband can’t; namely love and companionship. I know this is going to be received with mixed reviews. This goes against everything we’ve been taught. I’ve told my family and a few close friends and they give me their full support, even my children.
Have I totally abandoned my husband? No, I’m still the pivotal person in making sure he gets the care he needs. I visit him often. We no longer live together, because my 16 year old daughter was experiencing depression and stress over how her father was treating her. That’s another story and I think I’ve told it here. The point I’d like to make is, when someone came into my life and I let him into my heart I can once again be there for my husband without anger or resentment. I take, perhaps, better care of him now than I did before. I believe this can be done with dignity and grace and doesn’t have to be a sorted affair of deceit. I totally realize this isn’t for everyone. My relationship is different with my husband than yours is with your wife, or from anyone else’s relationship out there. We have to all look at our own situations and not judge someone else’s and how they decided to solve their predicament.
When someone says to me, “I could never do that”, I say “No, you probably couldn’t. Your relationship is totally different. Your situation is totally different than mine.”
I would truly like to know, why everything falls on us. Yes, our spouses or significant others are the ones that are sick and suffering, but why? Why? Are they relieved of the obligation to still love and be kind to the person who is sacrificing EVERYTHING to take care of them? Why are we expected to be there 24/7 and they don’t even have to say thank you, or I appreciate you are here to take care of me. Why don’t family and friends ask how the caregiver is feeling? Why do they stop coming around?
There is such a thing as caregiver burnout and I find it my mission in life to educate people about it; people who sit in their safe little “healthy” worlds and judge us. I ask that people not criticize what they don’t understand. And then there are the people in our situation that don’t want to see that they are on a crash course to disaster for not taking care of themselves.
People see the cute little romantic stories of old people in love sticking by each other until the bitter end through awful illnesses, but what they don’t see is the mental abuse (and sometimes physical abuse) that often we caregivers receive. If my husband, just thought for a second to maybe take my hand and look in my eyes and say “Thank you, I love you.” (Is that too much to ask?) I wouldn’t be writing the post this morning.
My point is, perhaps you need to take care of yourself, James. And then it will be easier to take care of your wife. It just tears my heart out to see caregivers suffer. Okay, getting off my soapbox.
Hugs, Linda
Good for you, Linda. I admire your helping yourself, your daughter *and your husband. What a bold, healthy move- and what clarity! Thank you for sharing.
Thank you CeeCee <3
Thank you Linda, you spoke for me! It’s very hard to live with someone who drains you physically & emotionally! Then I feel so guilty for saying it cause it’s not his fault he has MS, could be me! It just goes around & around. The anger, compassion, guilt. It’s good to know I’m not alone. Thank you!
Bravo Linda, bravo. I totally support what you are doing. We are individuals with one short life to live. Providing the care for someone with this disease means the rules of the game the rest of society plays by are not quite applicable to us anymore. I have wrestled with this and held it up as a great moral dilemma. I turned down an offer but I won’t turn down the next if there is one. I am paying my dues in spades and a tender touch from someone who cares would fill such a void. Bravo, Linda. Peter
Hello myname is Kathy I found this site looking for support my husband has MS we found out on our 15th wedding anniv.he had MS we will be married 42 yrs this year, but just in the last few months he is getting much worse the mood changes no more hugs it hurts him to bad, no intimate relations if I say I love you then he will but not on his own. My health isn’t good I have fibermyalgia diabites heart problems and I just found out I have lumbar spinal senos they want me to have rods and screws put in but if I do there is no guarntee I will ever walk I wouldn’t think of it now anyway.My husband tells me There is always something wrong with you he agrues with me my memory isn’t good because of the fibermyalgia but he doesn’t believe me he won’t even read the information on it, the depression he has we go days sometimes weeks without talking and lately it is agruing so I don’t say anything to him I have to keep telling myself this is not the man I marred almost 42yrs ago and then I think to myself I just want the man I married back.I know he is going through a lot of changes too but when I make suggestions I am wrong.I am so glad I found this website sometimes I feel so alone in this, there are neighbors but they really don’t understand and they see him changing .
My goodness Kathy, you did get double-whammied didn’t you?
It sounds very lonely and just plain hard. I’ve seen it so many times where MS turns people into these angry hurtful people. It’s now you need each other the most and MS is taking that away from the both of you.
Luckily, MS doesn’t turn everyone into these angry people. But for us unfortunates that are faced with this, it can be a lonely place that our friends and family don’t understand.
Hugs Kathy. Know that many of us know what you’re talking about. Here you’re among friends.
Linda
Thanks Linda I am glad to I have this site and friends who know what it is like to be a caregiver of a family member who has MS I went to my own doctor yesterdy and he told me not to keep things in wright in a journal which I have for years he also told me to go for a walk I have been going to TOPS (take pounds off sensible) it helps you to lose weight by excersing and just cutting down I have lost a total of 15lbs in almost a year, I am so proud of myself, you have the support you need to lose and good friends to help you.And my husband loves work in the garden and that helps too he takes his wheelchair out and gets on his knees and gets into the dirt we live in senior cottages and some of the neighbors help so I don’t worry about him to much even though I check on him.
Kathy,
What I am hearing from you is that you are in need of a lifeline for yourself. and fast. The situation sounds very toxic.
You should consider yourself first. Depression does terrible things to people. Your husbands depression is manifesting itself in anger and verbal abuse and that is not acceptable. There is help that can be delivered in a loving way. But one must be open to the help. Social workers are a great source of support. I urge you to reach out for yourself and then work on him with the help of others.
Lise
Lisa
My husband is seeing a counsler from the va in Saginaw and when he sees him he is somewhat better and I am seeing a counsler who helps me a lot but he goes to the va clinic in June to see his doctor she did her theise on MS in college and I’m hoping that now he has realized he needs something stronger for pain maybe that will help some of the anger he has and we are getting his handcontrols back on the van so that will help he won’t have to use his feet, we had them on the last voayger we had but last July we were in a car acciden somebody hit us on his side in front of the vfw here our guardian angel was with us a flashing sighn stopped us from flipping over air bags went everything if any of you have had an air bag go it reallyhurts a lot and we both had burns on legs from them so with this van I had to get new handcontrols put you all know how the goverment is.thanks again for e-mailing me its nice to have this
I’m so very happy to be able to read this page and all the comment’s. My husband has Primary Progressive MS. We have been going back and forth to Saint Louise for a year now. Know one know’s how long my husband has had PPMS. His doctor said he know’s my husband has had it for a while. I understand about the anger, mood change’s, memory lose and the body part’s not working right. It’s like you lose all sight of the man i fell in love with. I am very much in love with my husband but all this has been making me feel bitter and angry. I have spent the past 2 year’s worry about him, that i didn’t even know i had Fibermyalgia and i have been dealing with my own pain and memory problem’s but i have to stay on top of all this because my husband cant. My doctor has me on what i call my happy pill to cope with all of this. My depression was getting bad and thank God! he saw it before i did. I want to have the man i married back and yet, i know i will never see that man again. His PPMS is just starting to hit us both hard. He will start his copaxone and we don’t even know if it will help. I read his PPMS has no treatment or cure that makes me mad..why not! why haven’t the learn about his PPMS, i read because it would take to long. He has the rest of his life and i am sure there will be other’s, so they need to learn about it. They say it’s on the rare side and i wish i could find a support group with PPMS. If anyone know’s please help me find one.
Hi Sheryl,
I looked up MS support groups in St. Louis. (It sounds like you live there?) You might meet some other caregivers there that have spouses with PPMS. That’s what my husband has. Good luck- I hope that it pans out.
Support group for caregivers and family members of individuals living with multiple sclerosis.
3rd Wednesdays at 7 p.m.
National Multiple Sclerosis Society
1867 Lackland Hill Parkway
St. Louis, MO 63146
Michelle Jones 314.781.9020, option 2
michelle.jones@
gatewaymssociety.org
Hi Sheryl
I have been involved with a man who has PPMS. Was diagnosed 15 years ago. He made the decision 3 years ago to use diet as his “cure”. It is extremely time consuming at first but he has found it has made a difference in his over all health. Also many many supplements. His mind is very sharp.
i will say this, as my situation is very different because i met him after he became a wheelchair user; i do very little for him and wait for him to ask for a hand. For example getting in and out of bed he cannot do so that is always a give -in that I must help him. But all other functions he can do. I made mind up before we got into our relationship to far that I was not going to rush to his every need just because it was hard for me to watch. He is very appreciative of this. He is able to continue to be completely independent. I would suggest, as I say this to many of you, that create situations where your loved one can succeed. No matter how small it is.
MS is about exploration, find what can work. The simplest task can open up a new appreciation for you and for their ability to do for them selves. I know not everyone is in a situation with a higher functioning partner. I am not trying to sugar coat anything. Do I particularly like it when he has a full body spaz? No it is not attractive, but it does fade and his face returns and we laugh about it. I say to him..well.Next time make sure you buckle your seat belt cause you are going to slide out of that chair like an ironing board and you will be calling the rescue squad because i cannot pick you up!
As far as pain, yeah it sucks to see it and be completely helpless to do ANYTHING to ease it. The repeated spaz in the middle of dinner can really wreck the evening …but he would say to me….Lise, you must accept me at my worst to love me at my best. The attiitude helps tremedously. If the person who developed MS can maintain an excellent atitude things can change physically as well as mentally. This is not me speaking, this is what I learned from Wayne about his MS.
I cannot stress enough that having tasks that can be accomplished by the person with MS on their own is very important. For example If the indivual liked to cook but cannot accomplish wielding a french knife..you do the cutting but set up a cooking space at their height if they are a wheel chair user. They can sit there with an electric skillet and saute the vegetables, run a blender for healthy shake, make toast.
Everything will take longer and be messier but what a gift! I have children 11 and 15 and I remember this always..Childhood is not a race. Our lives have bumps, curves, collapsed bridges, insurmountable odds. We spend our lives trying to get things and accomplish..for what? We get hit with MS and it stops? No find another way. It is just different.
And in my reading I acknowledge that it does suck big time that your once friends and neighbors blow you off. Family too. Intimacy goes down the tubes and that is a big one for me. What then? I will figure it out when I get there.
Will he get better no. and that pisses me off. but I will not let it destroy the now. Communication is the only way. The only way.
There are countless problems, worries..finanical, emotional and I am not making light of those very very real concerns , i have them too.
Sheryl if you are interested in our diet and the affects it has had on overall health I would be happy to share it with you. This man was raised on a farm and he changed his entire way of thinking about food and the life sustaining ability it has. It’s all over the internet and in our libraries, but I have done the research.
Lise
Yes, Lise, I’m very interested in your diet program/routine. I’m a caregiver husband to my wife with MS. Look forward to your response. Thank you. Nanu
My boyfreind of four years has ms. He was just starting to use a wheelchair when we met. From the moment i met him, i fell in love and over the years have come to accept the physical challenges that he faces daily and do what i can to help, although at times i feel sad and powerless. Our sex life is good for now and we have talked about having a baby and tried to imagine some kind of future together. However a problem keeps coming up that it seems i can do nothing about. My boyfriend seems to be convinced that i have been cheating on him. He consatntly questions me on my friendships and acts suspicious of any person i mention, even female friends. He has told me that friends of my brother have made derogatory remarks about me and says that he smelled and tasted another man off me. Aprt from being shocked and angry, i am so sad that he believes this and no matter what i say or do cannot change his mind. i haven’t so much as kissed another man since we’ve been together and try to make him understand that it is not how i am in the world and i’ve always believed that actions speak louder than words, so i just continue to be with him and to love him. Now he says he doesn’t believe me and i am devastated and trying to understand what’s going on. It seems to me that it’s paranoia, based on insecurity, but i have no idea what to do. You all have so much experience, any advice would be welcome.
Dear Lou-Anne
Hi, I’m Cricket and new to this site. I am not new to the experiences you mentioned.
You said: “My boyfriend seems to be convinced that i have been cheating on him. He consatntly questions me on my friendships and acts suspicious of any person i mention, even female friends. He has told me that friends of my brother have made derogatory remarks about me …”
My husband and I married 4 yrs ago and 2 months after our vows he spent 5 days in the hospital from a fall. It was MS. He was not officially diagnosed until 3 yrs. later and it was PPMS. He began his accusatory remarks against me soon after his fall 4 yrs. ago. I thought I had made a terrible mistake and married an abuser! Please know that only God can strengthen you to know how to respond to his behavior. Alzheimer support groups offer the best advice and literature. (www.alz.org/apps/findus.asp) They have been my God-send! You have a choice to make. You may leave or go. I do not have that choice. The situation may indeed become much worse. It will also get much better. That is the nature of the disease. Please take care of yourself first and know that he may never possess the ability to apologize to you and/or show remorse in a way that you need or expect. He suffers in a we cannot comprehend. I love my husband very very much. Yet, I must detached my “self” from him even though I don’t detach my love from him. Hope this helps.
Take care,
Cricket
Thanks cricket, that was my first ever post and I don’t even know if it was the right place to put it, but so many messages on this site have resonated with. I realise that I am in a unique position of having a choice and I have chosen him for more than 4 years. I’ve chosen him because he’s the most inspiring person I’ve met, capable of the greatest warmth and love. However in some ways I feel that he is taking my choice away by his accusations. I know he will probably not apologise, as he has been so angry and I don’t know how I can keep defending something that is so ridiculous to me. I just don’t think he wants this anymore as he seems so convinced. I have seen every day how difficult and frustrating his life is. I have watched him push away people who have tried to help. I think that I’m the next one to go and it devastates me that it’s for no real reason. If I mention paranoia, he says that I am trying to shift the blame onto him. I just can’t win. I know I’ll always be in his life and help when he allows me to. It’s just very sad that our beautiful love story should end because of something that didn’t even happen.
My boyfriend is the most amazing, beautiful, handsome man I’ve met and I don’t blame him because I know what he goes through on a daily basis, so I think I’ll take a leaf from your book. I’ll detach myself from him but not my love. I have the greatest respect for you and all of the caregivers on this site and can only hope to learn and gain solace from the experience of others.
Thanks for replying cricket
Hi my name is debbie. I am a 55 year old woman with severe RA. I have limited used of my hands, they are pretty mangled from the disease. I have been able to work from home part time. My son was diagnosed with MS about 10 years ago. He went to college graduated with honors and headed off to grad school got his masters then decided to join the workforce as a chemical engineer for a pharmaceutical company. He had a few relapses over the past ten years that were treated, he went into remission and life went on. He is now 28 years old. A year ago he had 3 back to back relapses. He was hospitalized for 2 months then on disability for 4 more months. He has never recovered use of his legs or right arm. He is incontinent, has tremors on his right side. Fortunately at that time of the triple relapse he was living at home saving money to buy his own home. His father and I are divorced and he lives out of state. I have a separate apartment in my home so Andrew has his own private place. I have been his primary caregiver for the past year. He was able to go back to work as a technical writer at his job. My problem is his growing resentment towards me has gotten out of control. All his anger and frustrations are taken out on me. I would give my life for him but he has no appreciation for me or anything i do for him. He treats me like a stupid slave and I have taken it because he is sick. With his latest meltdown this week I cracked I told him I couldn’t take it anymore. I have received several emails in the past few days designed to cut me to my core. He does not speak to me just emails.
I set boundaries for myself and told him I would treat him like a renter and leave him alone. But the reality of his needs still exists.
I cared for my mother during a long and difficult disease and I cared for my brother in the final years of his life, he had ALS. Both were loving and appreciative and caring for them was a joy and an honor.
I dont know what to do with Andrew or how to handle this deteriorating relationship. As I said his father lives out of town so I cant ship him off to live with him because Andrew does work here. I feel trapped without options. His MS is not improving and he is in denial about the amount of help he requires. What can I do?
I wonder whether we need to find a letter that we can use to send to the people that we care for. Something written by a doctor or a psychiatrist or someone with some authority.
While I can understand that it must be so, so hard to be helpless, trapped in your own body, feeling like a child and all of the resentment that goes along with it, the person with the illness needs a wake up call too: they are not in this alone. It affects us too. And all we need, or some of what we need, anyway, is a hug, a thank you, a ‘how was your day?’
Maybe someone who *has* MS and is less depressed and resentful would be willing to write one?????
I know that my husband, who is great (asks for what he needs- like ‘please let me try to do it by myself, and just go ahead and fail with this one’, thanks me, helps in all of the ways that he can) would tell me to get myself to Al-Anon. He often does! It helps. I keep learning how to take care of myself and to get a full life for myself. I kind of lose my separate life without it.
I’m so sorry. It sounds so hard. Put it out there- maybe someone will write a letter for all of us.
CeeCee
This is such a wonderful place that you have here. I thought I was by myself. I’ve been married to my lovely wife for 30 yrs this September. I love her so much and she is the woman of my dreams. We have 2 beautiful daughters and a granddaughter on the way with our oldest (22yrs). I said all of that to say this… I really relate to James. I too am the caregiver of my wife who has PPMS since 2009 with very little help from family or outsiders. She is between the wheelchair and the bed everyday (and that’s right you guessed it I do that 90% of the time). there has been no intimacy for a long time and the guilt I feel for even thinking that holding someone else would do me good is scary. We are both young also I’m 55 and she is 51. I know that sharing on this and listing to others has been refreshing for me. Thank you all and i promise i will stay in touch. I just got home from work and need to go in the house to take care of business. Everyone here knows what I’m talking about.
Feeling really blessed last couple of weeks. She is visiting with family. I’m in my second week without caregiving. Can any of you say that you get this kind of downtime and peace. I have no had sex in 8 years, but you learn to appreciate anything that give you rest and relief. And this break from caregiving is better than anything right now.
My mother was diagnosed with M.S. in 1970 at the age of 42. My father left not too long after she was diagnosed. That is when she asked me (her son) to come back home and care for her. She didn’t want to be alone. In the mid 80s I had to put my career with the Southern Pacific Railroad on hold. Mom was now in a wheelchair. Everything was going good. I started a little gardening business during this time because I didn’t want to go away for days at a time and leave her alone. Everything was great until Mom got the flu in late 1997. That is when my sister decided to step in and cause all hell to break loose. Long story short. The county in which we live decided that since mom had MS. she could no longer handle her own affairs or her own money. Even though the doctor evaluated her and reported Mom was perfectly capable of handling her own affairs, the county took everything from my mother. The reason they gave was due to MULTIPLE SCLEROSIS! So to all the people who have MS. let this be a lesson to you. If you have MS. you can lose your right to manage your own affairs, your own money, your own medical decisions. If you have any questions please feel free to contact me.
650-921-2981
Sincerely,
Richard.
Hi Richard,
I am in grad school for social work, and I have a professor who is a geriatric attorney- he keeps older people from getting screwed. It sounds to me like you need to get a legal consultation. I can’t imagine a scenario where this is legal.
My sister has progressive MS. She can not get in or out of bed by herself, dress herself, go to the restroom (she wears a diaper or just soils herself). Her husband left her so she moved in with my 84 year old mom. Mom is overwhelmed as my father just passed away after years of being disabled and of course she took care of him until he died. Not only can my sis not walk but she has lost almost all use of her right arm. She has leisions on her brain and her entire thought process has changed. She has alienated everyone but me and mom with her belittling of all we do. I keep reminding myself that it is the disease, not her, But it hurts so much to constantly told you do everything wrong. I am becoming angry, resentful, bitter, depressed and the list goes on. She calls me several times a week to come do something for her. I live 50 miles away, try to keep my grandbaby some, have a home and husband to care for, have had a broken wrist for 3 years( the doctors have to remove 4 bones because they are dying), I will lose 90% use of my righthand and I am right-handed. I am only one person and can not do it all. Somone, please help me put all this in perspective as I am so distraught I can not seem to di it myself.
Hi Theresa,
I think you’re looking for someone to say its ok to move your sister to a nursing home. I’ll say it, its OK! After hearing what you have to say, I cant believe you’ve lasted this long.
Its not going to take long for the stress of caring for your sister to take a huge toll on your 84 year mom. I dont know how her health is but I know I’m only 60 and taking care of my wife has aged me. Please take any time you have and look into a nursing facility. I think just talking to them will help you make the right decision.
Your mom is too old and you don’t have the time. I learned by talking to nursing homes that its not a finality, its just another step. By that I mean I was told that I could still not only go there to visit but pick up my wife and take her out and even have her sleep over if I prearrange it. I know it sucks to think of that, but we have to. If we wait to the last minute then the results willl be last minute results / possibly a nursing home that your eventually not happy with.
The ironic thing about the way we caregivers think is that we feel as though our loved ones are best at home with us for as long as we can stand it. When in reality, there comes a point where our care becomes so diminished that their quality of life suffers along with ours. I should be exercising my wife much more but I don’t do it religiously, because my time is so limited. I know in a good nursing facility they will get her PT and interaction with others. Therefore when I do get her in a facility our time together will be better quality.
My thoughts are with you, you’ve done your job, its time to take the next step. Please dont feel guilty just think of the good you’re doing for the 3 of you by making the best decision you can right now. God speed.
Rich
i think rich offers great advice. it takes so much strength to admit that you can’t do it all. good luck – you are in my thoughts.
Hi Theresa
I agree its time to start thinking about a Nursing home you have done all you could do and your mom doesn’t need to take of her even though she feels obligated,your mom already had her time as a caregiver it is very hard, I took care of both my parents before they passed away so during the time of taking care of them dan my husband who has progrossovive MS we talked and decided to find a place that we could put our appilication in now so when I couldn’t take care of him anymore He has MS since 1980’s and it is getting worse everyday I am 60 yrs.old and my health is bad because I didn’t take care of myself I have a bad heart I don’t know what your mom’s health is but it is no crime to put your sister in a nursing home and they tell you that.You and your mom have been good caregivers but you can only take so much.good luck.
i find myself getting more and more envious (and therefore more and more bitter) about our situation vs. everyone else’s around us. sometimes we meet people who are trying to have babies and everywhere they look they see babies. well, everywhere i look i see dads that are walking and playing with their kids and are actually happy and upbeat. and even noticing how the marriages of our siblings are going so well and not even close to being as stressful as ours. oh how i want that. it seems dangerous to go down the road of “what if….” because we are where we are and no one can magically make my husband the person he was before MS started eating away at him. today i actually saw a woman in a scooter and she had 2 young kids and, it seems so twisted, but i was so excited to see someone with a similar lifestyle as us. i wish i could find a real support group here in the san francisco bay area, but all my searches have turned up nothing for caregivers. if anyone on here is from the SF bay area and knows of anything, please let me know.
Sarash, it sounds like a normal grief reaction, the “what ifs.” I am going through the ‘wishing things were the way they used to be…’ lately. I would think SF would have caregiver support, I think the family caregiver alliance is based there (you could google that and probably find it).
I know exactly how you are feeling. My husband was diagnosed when he was 18 and received very little support from his parents. They pushed him to not go to school, to never work and frankly, to just stay home and do nothing. Since my husband is RRMS, he had full use of his legs and despite tremors in his left arm, if you were to look at him, you would never know he had MS. Over the years after we started dating, his disability worsened slightly which he handled with grace and dignity. He was so inspiring and never stopped moving forward. He had set up a workout schedule, nap schedule, everything that he needed to do to keep moving. Unfortunately all that changed about 4 years ago when he had a major relapse which followed with a year of intensive physical, speech and occupational therapy. The doctor didn’t think he would walk again but to everyone’s amazement he was walking up and down the hospital corridors with no problems. Yes, his MS symptoms worsened but, as all his therapists assured us, with adjustments made in our life, HIS quality of life would improve. Nothing happened. It’s like he gave up. He refuses to exercise anymore and if he does a small amount of light weight exercises, he makes it a point to complain the whole time and will do it completely covered, head to toe, in blue jeans, long sleeves shirts, etc. He doesn’t want to watch what he eats, despite my being on a heart healthy diet due to my blood pressure (high at 31 is not a good thing), he refuses to play any memory games with me, he doesn’t play the Wii games the therapist suggested, nothing. His whole focus is working part-time and even though he chooses to goof off with other co-workers which has caused problems. He doesn’t recognize the symptoms of his tiredness at the end of the day and sometimes, he will soil himself after he has held it in for too long, despite him being around a bathroom. It is so hard to have him say anything and constantly I feel like I am supposed to be a physic who reads his mind. I find myself resenting him so much and have been on the verge of walking out and it is so incredibly hard to get rid of the guilt. I envy the “normal” families who seem to have it all and I often wonder where my life could have gone differently. I recently had a miscarriage and I have had so much trouble dealing with the depression that caused but it is quickly turning to something more. My husband doesn’t help at all but instead spends his time on the phone with his family instead of speaking with me. I know my husband can’t help a lot of things but there are somethings that he can accomplish. He is walking after 15 years of diagnosis, prescribed the best medicine out there and “looks great despite it all” as so many have said. I know after reading so many articles that depression and anger, etc., are normal but what about the envy and bitterness? Who is there to tell me to continue to stick around when my heart is tearing in two? So yes I understand the feeling of “What if…” and the frustration. You want to cherish everything and experience everything that a “normal life” involves instead of dealing with..well…life. I don’t know if this helped but you are not alone in how you feel.
Mom and I have talked about finding a good nursung home for my sister. We started looking several months ago. Mom wants to live in a gated community for seniors. This weekend mom told me that she can not just throw my sister away like my sister’s husband did. She said that God has a plan and as long as she is alive my sister will have a home. So I must accept that things will only get worse as my mom and sister rely solely on me and since my sister needs more and more care all the time, They are paying someone to get her in and out of bed, which I can not do because I am psycically unable. They depend on me for all else. I can not leave my mom alone in this so I guess I am bound with it. Don’t get me wrong, I love my sister but my homelife, my health, and my self time are slowly disappearing. I need them in order to be a complete healthy person. I am going to my doctor Thursday. I am so depressed and I am hoping she can help with it. Thank God I found this site as it looks like I will be needing it. I have no support here. Everyone tells me to just stop helping. That is not an option since it would be putting this tremendous ordeal solely on my mom. I want my mom’s last years to be as carefree and enjoyable as possible. She has already been through so much. Thanks for listening to me. God Bless you all. Please pray for me.
Theresa,
I know that what you are facing is very difficult; I have thought about what I am going to do in my situation too. I am the caregiver for my wife who has PPMS. She no longer walks and needs help just to get up in the morning. Her mind is still sharp but the disease has been brutal to her body. I belong to an organization called “Share the Care” it is strictly for the caregiver. It sounds like it something you need. There are people there who will direct you. Go to their website and contact them; http://www.HelpForCaregivers.org. I know that we are here in Orlando but I personally know the people in the office. You see I became a Board Member and refer people all of the time. It is my intention also to keep my wife out of an institution, but there are times that we must look out for ourselves. It was just recently that I found this somewhere and I hope that it helps you as it has helped me.
I really want you to remember that all of us here that are offering advice are in very similar situations and we all know that MS takes its toll on each person differently. So good luck and I hope to hear from you soon. I will probably need your help then too.
Caregiver’s Bill of Rights
I have the right…
1. To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.
2. To seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.
3. To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
4. To get angry, be depressed, and express other difficult feelings occasionally.
5. To reject any attempts by my relative (either conscious or unconscious) to manipulate me through guilt, and / or depression.
6. To receive consideration, affection, forgiveness, and acceptance for what I do from my loved one for as long as I offer these quality in return.
7. To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.
8. To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.
9. To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting Caregivers.
— Author Unknown
Hello i am new to the site as well. My husband was working on our horse barn and thought he pulled something bad, he was in the hospital for about 10 days, they did every test they could. They sent him to three different neurologist, this is what his doctor say’s, He was diagnosis with mulitiple sclerosis, immunomodulatory, muscle cramps, right side abdominal, groin pain, urinary and bowel dysfunction. vision difficulty, gait instability and cognitive dysfunction, observable neurologic injury, patchy sensory loss, mild right ataxia of the leg and reduced lower extremity reflexes. So he has ppms a bit on the rare side because of all the symptoms. I will stay with him through it all, he is my prince and i am very much in love with him and i too, know people think i am crazy and i have been told to walk but i wont. He took good care of me showed and still does so much love, we do have sex when he can but i don’t worry about all that. Yes life is short and i think our love one’s gave to us, now we get to show them who we are made of. I tell my husband when he want’s to fight, to shut the f up and he does. I will pray for all of us and let God worry about it, i am here for a reason and now i know why God sent me to meet him. I didn’t really date much for ten year’s, was so hurt from before. Stick in there James and the rest of ya! God bell ya all
Thank you Lisa and yes i would love to know the diet plan you have going on with your hubby, thank you so much for all the info as i am sure it will be great help. My husband is still able to do most of the thing’s his self and i do let him until he ask for help. We talk a lot about what is going to happen and what is going on in our live’s now. Thank you again Lisa!
I have been looking for a resource like this for a long time. i cried as i read all the post. Because now i don’t feel so evil for being tired angry, grouchy, just a all around bitch, i am truly burnt out, no sex, no fun, no life, just day in and day out care giving,
Let me first say my husband who is a wondrful guy has ppms. He is sweet and handsome. But he is to much for me to care for. I do everything include change his diapers and giving him bed baths. I have had affairs on him but end up feeling worse because of all the guilt. I want my husband to get well again and he’s not. my husband has been bed ridden for 4 years i had put him in the nursing home. It did and did not help because i did not even like going there, they where neglecting him. i would complain but it never got better. So now he’s home and i will have to admit to neglecting him myself. Then i feel worse.
Both of our families have withdrawn. I don’t know why and can only speculate. We have no friends, I don’t want outside help because i don’t like strangers in my house especially when i am not home. My husband can’t tell me who has been here or not. Is it wrong to know what goes on at your house?
I think i am loosing my mind. But i know i am just so heavy burdened with this it makes me wierd. I feel wierd, i have chest pains all the time and i am loosing my hair.
I want to stay/leave my husband. I want to be here. And i want to leave. I want to go out dancing with my friends and i want to take him for a walk. I want to go out to dinner with my friends and i want to bring him dinner in bed. Most of all i would love to live the life my husband and i planned without MS. He was so hard to find. Now its like the disease stole him from me.
Dear Vontreava,
I’m glad you discovered this site. Just knowing you’re not alone doesn’t change your situation, but at least it helps knowing that someone understands what you’re going through. It sounds like you really need some support. Going through this is almost impossible without it. The fact that you have no family or friends helping you is going to take a toll on your health as well. Then both you and your husband will be helpless. Have you sought out local MS or caregiver support groups or church groups in your area? Do you happen to be anywhere near Houston? Check with your husband’s neurologist to see if they can refer you to any support groups. As you stated, MS is a thief! It’s already stolen enough from your life, don’t let it steal you too.
Dear vontreava
You can also contact the National MS and they can give you lots of information also you can look on your computer and look for MS support group in the town you are in, I hope this helps. My husband and I found out on our15th wedding anniv, We were so scared we cried for a while then we decided we were going to rule it and get some help We will be married October3rd 42yrs. There will always be bad dayswe still have them on those days I just leave him alone unless he needs something and we never talk about anything important dan is in a wheelchair.And is getting worse everyday.Kathy
Vontreava –
Honey you have to get help! I know it’s intrusive, I’ve been there, but doing it all yourself is NOT an option. I recognize the chest pains, the hair loss, the fear of losing my husband and the fear that I’d be stuck in the situation forever.
A way to get around the fear of strangers in your house is to do some really good background checks and to get to know them. My husband’s caregivers are probably my best friends now and my confidants. But believe me, I was where you are now. I’ll admit that it was still an intrusion and my daughter hard a very difficult time with it, but I don’t see an alternative here. You really really need help, please check out what the others have posted here where you can look.
Hugs, Linda
After finding this site I feel that I have a twin out there. I too have a husband who ways recently diagnosed with PPMS. He is able to care for self most days and has only needed help to undress after being incontinent of bowel. I worry about what comes next and how disabled he might become. We also have not had intercourse for over 2 years. At first it bothered me but then I came to the realization that I married for love not sex. I married for better or for worse. That doesn’t mean that I take abuse, or that I have to be the only caregiver. When the time comes I will bring in help. If you don’t trust people in your house then make sure you are home when they are there. I am new to MS but I am not new to caregiving, I have been a LPN for 40 years, I have Fibermyalgia that flares up at times but is under control by medicines. I too am 60 years old and have been married for 39 years. I will continue to check posting here because they speak about our feeling and it helps to know others are out there with the same problems and a lot of us are the same age and can relate. Thank you for showing me I am not alone. Marge
wow so many emotions, what do i think of it all? i haved lived with MS now as a caregiver for 7 years and i am learning about myself more everyday. All the scenarios that i read about on theses blogs i have been through or at least thaught about at one time or another. the worst days of my life are because of MS. My daughter was 12 when she first started showing signs and in the first year of her remitting MS i watched as she had relapses every three months that lasted 3 to 4 weeks at a time. Symptoms included blindness in one eye , paralysis of ther right side of her body and nausea. one of my worst days was taking her to the hospital and watching her walk the long distance from the parkade to the clinic, seeing her drag her right side up the long corridors and into the elevator to start a 4 day infussion of steroids….i just wanted to cry like a baby. the straw that broke my back was when the diagnosis came in and it was MS…..I remeber holding back my tears as they told a 13 year old girl that in fact she had MS. I watched her shoulders fall as if she had been defeated….it is and probably will be the worst day of my life i cant think of a time when i have felt so empty.
At the same time as this was happening My wife started having symptoms , numbness in hands and pains in her lower extremities……this couldnt be MS also? in a matter of a year both my daughter and wife were diagnosed. it hasnt been easy for any of us Nicole (daughter ) is doing well on her meds adn has not really had a remission in approx 5 years …Kate my wife on the other hand has not been so lucky in the MS has riddled her body and now she has only a little movemment in her right hand. What a waste, she was and still is a beatiful woman and has the strength of ten men…. . Care giving for her has been tough , i fall down a lot so to speak, feel sorry for my self , i can be selfish and yes many times i treat her bad….just the way i talk to her , the tone i use, damn this life is not easy. but i do care for her and im trying to keep her at home, its where she needs to be, somehow we will make it through. the one thing that i tell myself often is what if it was me in that bed….i see her there , its not her fault, i have to remeber that i am not the one that is sick…..i can get away, maybe only for an hour or two…. but i can. My wife knows that , she understands when i am tired and somethimes i will tell her that i need a break thats when i will go to the gym, walk the dog or maybe do an errand or 2 and just get out….you have to. though i am like many of you and miss the intimicy of a husband and wife relationship i have been able to steer away from affairs and beleive me its not like i have never tried …to be honest, in the past, i have backed away when it looked like things might happen. Anyway is it right to have an affair ….who knows …i dont think its anybodies business but mine……i think mostly its about feeling good and for myself ive been happy with just talking to the hot girl in the neibourhood…pretty harmless i think……at my age (50) sex isnt big on the radar anymore and a good conversation is all i need , just enough to get me though the next rough spot…besides that ….a dog …..a fishing pole …and the gym….keep active and healthy….so far im holding my own. its not easy…but im not the one thats sick….right….D
Dan, I can not imagine telling a child that this coud be the way your will be. The way they sugar coated my husbands ex was by saying it just. Might burn out,, but you won’t g ET. Worse if it dose but you won’t get better either. We are still so new to this and hope things will settle down soon. How old is your child now?
i found this place in July and posted last in August. Wow, i know the feelings that we are all going through but we all know that each persons MS is different. since my last post on 09/05 my wife and i had out first grand child; that was a wonderful uplift in our life. Then on 09/18 we celebrated our 30th Anniversary. Ok now back to the real world. i still do the same things that I do every day. My wife has PPMS and can not get out of bed or move with out my help. I feel like Dan and probably many others here; if the shoe were on the other foot i know that my wife would be here. You want to know why…
“the rest of the story” (oh by the way i put my wife to bed for the night and i’m up writing).
This August 1st. my mother-in-law passed from cancer. When my wife and I go t married thirty years ago she had to make a decision, we are a interracial couple. Her side of the family was very racist (involving the KKK) when she made that decision and she really walked away from her family and said I’ll spend he rest of my life with you without them “for better or for worst…in sickness and in health. We have two lovely daughters and now a grand daughter. Through the years her mother and her side of the family came to terms and we got along but in August from her mom to her grand mother to her great grandparents they are all gone now. Her Father is still alive in his 80’s but alive. he has not spoken to her in 30th years. I have worked in Law Enforcement and have been in one shoot out in my career can truly say that if it were me i know without a doubt that she would be there for me.
On the other hand does that make it any easier? Well we all know that answer hat is why we are here supporting each other.
Anyway thanks for listening.
Hello, Not really sure where to post this long and involved tail, but hoping you guys can offer some guidance. I believe I have read every post on this website at this point and just wanted to say that I think MS Caregivers deserve medals and money and vacations and lots and lots of chocolate.
So, last January my husband, 29 years old, got very very ill. It started with a headache, then his legs got wobbling, his thinking got slow and foggy, his hands started shaking, his face started swelling, word salad started spewing out of his mouth and finally he collapsed. This took place over the course of about 3 days. He had gone to the doctor and been sent home repeatedly, and when he collapsed I took him to one ER, then another. Finally he was admitted. MRIs, CT Scans, lumbar puncture and five days later he left with a cane and a possible diagnoses of Migraine (I know, right?). All the tests were clear. The only things off were he was a bit dehydrated, and had low IgG levels in his CSF.
Now we are in October, he still has the headache (all day, every day) and occasionally gets wobbly, or word salad, or brain fog or weak legs, or vertigo or any of the other weird things. There was a whole week where he was randomly taking off his shirt for no reason. Knew he was doing it, had no idea why, couldn’t stop. He got trapped in the car because he couldn’t make his hands open the door.
Still no answers, but they are starting to think MS. I don’t know if I agree, because it sounds SIMILAR to MS, which I know can have many different progressions and presentations, but it doesn’t seem like a good fit. I am leaning more towards ADEM, but again, not really sure. Drs aren’t sure. We have no answers.
Now, here’s where it gets tricky. My husband spent the first five years of our marriage being the biggest *sshole to walk the face of the earth. He emotionally abused me and my oldest daughter. I finally work up the nerve to divorce him and they diagnose him with OCD and start hinting at MS. The pills and therapy for OCD are helping and for the past three months he has been a really great husband. That doesn’t make up for the prior 5 years though, I have the divorce money sitting in an account, waiting to go to the attorney. But I can’t divorce him if he might have MS. I would probably never forgive myself.
On the other hand, we are talking about a man who is literally twice my size. There is no way I could take care of him should he become disabled. So… I am so lost. I don’t know what to do.
How can I make doctor’s care enough to actually TRY to find out what is wrong with this man? He has a GP and two neurologists, none of whom will actually talk with each other. I find myself being in charge of sending medical records between the offices, and driving out to the hospital to pick up MRI cds and I am really frustrated.
And then I sit here and wonder if I even WANT to do this? Do I want to be a caregiver to a man I was planning on divorcing? What happens if I lose insurance and he can’t get his pills from the shrink? Then I am just stuck with him being a giant a-hole till I die? Because he will certainly outlive me, I have my own medical problems.
Help…any guidance…anything.
Go through with the divorce and don’t look back. The guilt couldn’t possibly be as bad as the resentment, hopelessness and grief at the loss of your own chance at happiness. I speak from experience. My wife’s diagnosis came 2 weeks after we had filled out the D papers. I’ve stayed for over 5 years now. Have tried everything to rise above but the bitter reality is that this is as miserable as I have ever thought I could be. She, too, was verbally and emotionally abusive and it has only gotten worse. Life is too precious.
If I didn’t have my wonderful kids I’d consider calling it a life and cashing in.
The advice someone gave me was that it is unconscionable to abandon someone who is so severely disabled. This disease will kill us both.
Sorry so negative but at the moment I stand by what I’ve said.
I’m afraid I agree with Peter. Divorced, you can help him out as much as you want on your terms. If you so choose, you can help him as much as you physically and emotionally can.
I find that I can help my exhusband even though we’re divorced and my resentment and anger have decreased making it easier to help out with the things that fall through the cracks between his caregivers and his family.
Hope this helps.
Hugs, Linda
This is not a dress rehersal and yo want get another chance to re-live life again. I have chosen to stay with my husband, but i still work, hope and pray everyday for a different life. But it is a journey that i am going to chose to take. Shoot every body cant live the good life.Lol. The only real comfort for me is to know without a shadow of a doubt is that God himself is with us in our time of turmoil. So he is a ever present help. So i guess what i am trying to say is,,, if you stay life is going to be hard, and you will have to give up a lot. But you will have God there to comfort you. Or you could leave and try to lead as normal a life as possible, and still go visit, sit, and support him. Either way you will not be wrong and God will be there for you. I just chose the hard road. And i am not gonna complain but i am gonna enjoy this route too. I hope i make since. Its kinda like exercise you can dread it or you can be thankful for it.
But i do stll hope and pray everyday for another life!
I agree with Peter. There comes a point when you just must leave. Throwing your life away is just too much to ask.
This site is a Godsend for me today. It’s funny, in the past when I looked for caregiver support sites I didn’t find one, and here this is. I am not sure why I didn’t find this before. I want to say hello to this group and hope to follow and participate. I have been married to a man with RRMS (we met in the summer of 2003). He was diagnosed many years ago at age 30. We were able to get him on to SSDI a few yrs ago after a battle (I might add), but the loss of his career has been devastating (he is 52 yo, former medical radiographer), and the grief has really taken its toll on him and on our relationship. His family has really not stepped in, I have to say. I’ve been left out there all on my own. I went to support group for awhile but due to economic circumstances can no longer attend. An online support is just what I need. I am dealing with much grief and loss right now. When we first met it wasn’t perfect but was far more “normal” than it is now. He is fully physically mobile, however, his issues are significant and include disabling fatigue, cognitive difficulty and –I have to say– behavioral issues. I took a job one hour away from our home and stay at a friend’s house a few nights during the week. I think I was in a bit of denial, but in part I believe I took this job to get some space. The truth is, relationships stress him out, and not just with me.
I was the caregiver for my mother who has had MS since 1976. In 1994 the San Mateo County Public guardians decided that due to my mother having MS they needed to take over her finances and her life. Before the guardians stepped in my mother owned her million dollar home. She had a good size nest egg with Charles Scwab. Now her home is gone, her nest egg is gone, and I am homeless.
The guardians were able to take over every aspect of her life because she has MS. My mother is perfectly sane. NO alzhiemers, NO demetia, No mental impairment. So if any of you people that have MS ever get a visit from a social worker from the guardians office or APS run, wheel, or walk as fast as you can to get away before you lose everything.
Sincerely depressed and broke in California
I came to this site looking for something, i don’t know if it was support or to just see that there are other people out there going through the same trials and tribulations I am. I am a 29 yr old married mother of 2 wonderful daughters *10 and 2). while i was pregnant with my youngest my husband and I moved back in with my parents so i could assist my father who has ppms. When we first arrived my father was still pretty independant, walking with canes but still able to do most things for himself, but as is the nature of this beast in the last 2 years he has become completely dependant on me, his legs no longer work so he is unable to even transfer himself from his wheelchair or bed or anything else. My biggest isue is that he has become SO dependant on me that he won’t allow anyone else to do anything for him, and the support workers we have coming in are only allowed to do the bare minimum for him, as he would rather I do everything.
I love my dad, don’t get me wrong, but i miss my life. I sometimes feel like i have to choose between spending time with my husband and kids or meeting my dads needs. To the point my husband and I (we’ve been married for 6 months) gave up our honeymoon so i could stay here with my dad. He has also become extremely demanding of my time and attention, if i don’t jump for his every whim he becomes sullen and takes out the anger on everyone else and , well honestly acts like a spoiled child for days.
I am so scared that i am going to either burn out or grow to hate/resent my dad. But I don’t know what to do, and really have no one to talk to since my dad is so young none of my friends can understand and our local ms society has nothing for caregivers.I know most of you are caring for spouses or significant others, but hopefully there is someone out there who gets it?
Samantha. If you are going to do this you are going to have to do two things. Compartmentalize and take charge against your father’s behavior. I’ve been doing both for 11 years and as tough as ms caregiving is it would be much worse without this. Sit down with your husband anywhere outside of the house and get his input on what he needs from you given the situation. Then the both of you sit down with the kids tell them how important they are and then tell them your care plan for their grandfather. You must sit with your father and remind him that while you love him you also have a family who needs you. You also must tell him that you will not be taken for granted and expect him to be respectful to the other time demands in your life. Also tell your dad he will allow the caregivers who come in, to do their job. They are there not only to help him but to also allow you to have time and energy for your family. If this is uncomfortable for you, you will have to get other it. Take charge if you are going to make this make any sense. It’s tough enough dealing with what you can’t control without allowing the things you can control to dictate to you. Remember none of this works without you.
I get it!
There are many similarities in your situation that we face taking care of spouses. Also, before my husband became very ill, I helped my mom take care of my dad who had a stroke and then 20 years later suffered from cancer. The underlying issue seems to be a family member that depends on one person and not letting anyone else take care of them. With my dad it was my mom. He wouldn’t let me come in and give my mom a much needed break. With my husband it was me.
You have a husband and two children who need you too. Please don’t feel a shred of guilt if you need to tell your dad that you can’t do it all and he has to let others help him when you need time for you, when your kids need their mom, when your husband needs his wife. I don’t know if you read through all the postings here, but I’ve written how my daughter (now 16) became ill from the stress in our home. For her I had to make the decision to leave my husband and totally hand over his care to others. It took a lot of effort, a lot of people thinking I abandoned my husband, and some family have even expressed they think my daughter should feel guilty. The sick person is not the center of the universe. You and your family and your wellbeing are important too.
I know… easily said than done. It isn’t easy. It’s incredibly hard, but totally necessary for you and your children.
Hugs, Linda
Thanks everyone. And I have stood up to him, and told him these things, which is when the sulking comes in, or he cries, which yes i know becoming emotional is a part of this hell he is trapped in, but like a child you get to the point where you can tell a real emotion from faked ones. I have started standing up to him more when he is crusty with my kids, and telling him straight out that he needs to start respecting what i do and my time, because i can always up and go then where would he be? Doesn’t seem to change him much, but then again he was always an extremely selfish and spoiled person even before this.
I do want a relationship with him, actually until he was diagnosed we never actually had one (hes a recovering alcoholic as well). But i honestly wonder sometimes if it is worth it. But in the end at least my kids are getting time with him before he is gone, And I won’t have the regrets others in my family will have in the end, because we will have done everything we can for him while he is here.
Glad i found somewhere to vent where people understand!
I am really frustrated today. My sister has PPMS and can not use her legs and very little use of her right arm. Her husband left her so she moved in with my 84 year old mom. Someone has to come in the morning to clean her up and get her out of bed and again in the afternoon to clean her up and put her back into bed. There are 5 siblings but she has alienated them all except me. That is because I won’t let her. She has become so mean and hateful yet she sees no difference in her behavior. She talks so very ugly about our mom and wants me to agree with her. But I can’t. Mom is doing everything in her power to help my sister. No, their ways are not the same but my sister insists that since my mom won’t do things the way she would that mom is just being hateful. She hardly speaks to mom and whe she does, she is horribly hateful. I am older than her and have physical problems but am the only one she has to take her anywhere.. to the dr., to get her MRI’s ,her IV treatment, to WalMart, etc. Now my sister refuses to eat except maybe once a day. She has gotten so weak and her MS has gotten so much worse. She is no longer trying to live. It causes me such pain. I can not imagine how she feels but I don’t want to lose my sister. In less than 3 years I have lost my daughter, my dad, and my son-in-law. I do not think I can stand watching her allow herself to die much longer yet if I quit doing for her, I will be leaving it solely on my mom and she definately can not handle my sister’s needs. I have gotten to the place where I have to scould her like a child just to get her to eat. And she was a RN. She knows better. I have suggested she go talk to a therapist but that went over like a led balloon. I firmly believe that if she would communicate with mom, things would get better but my sister sees no wrong in her behavior. She blames everything on mom. Well. I have to go take my sister to the doctor as she has another bladder infection. She says she has had it for 3 weeks but now a fever has developed. Please pray for our family. You are all always in my prayers.
I have been caring for my husband for 13 years and it has become most of my world beyond the workday. While this site is a godsent in many ways, it does not help with the loneliness, for that I need to have more personal contact with others — conversations with others who really ‘understand’ what I am going through and an actual shoulder to cry on every now and then. I have not had a great deal of success with support groups. Usually the members are too diverse in age and situation, I am middle aged and am caring for my husband who has PPMS. Many of the caregiver support groups take place weekdays, during workhours, which make it impossible for me to attend. I know that people who post to this site are from all over the Country, but does anyone know of a good group in the MD/DC area that meets evenings or weekends? Or other ideas on how to manage some of the isolation that develops over years of increasingly progressive caregiving. I am trying to hang in there for my husband, but with each day, this gets more difficult and I think that if I could find some way of revitalizing myself it would benefit both of us. All suggestions are welcome…. I’m so burnt out I can’t come up with any ideas on my own that seem achieveable. Thanks ……………………….
Carol,
I totally understand your situation. I feel the same way. Are you still here?
Andrew
I have not been on the site for awhile…. it just is too emotionally exhausting sometines … while I understand the value of group support offered by this site, and find it helpful at times to hear that I am not alone, it is not the same as face to face, and sometimes actually makes be feel lonelier just having written contacts to turn to for support. I am starting to get back on the site again with greater frequency and appreciated your reply. It’s nice to be heard.
I hav e a 43 y/o old husband wirh m.s and my problems are way different, but I have lost both of my parents at a very early age. I would cont to do all u can for your dad because you never want to have any regrets. Of course this is assuming that you have a great or want to have the ending of a great relationship with your dad! email me with your phone # and we will have a conversation. WITH LOTS OF CARE, SUZETTE.
My husband was diagnosed with PPMS 7 years ago at 59, but was was progressing since he was in his teens. We were doing OK, he had aids come in once he had a foley catheter due to urinary incontenence and he wound up in the hopsital recently with infections galore for not taking care. He has been there since 12/19 and after 5 days in hospital he went to nursing home, developed more chronic infections. He is very weak. Prior to his hospitalization, I was hospitalized and diagnosed with Congestive Heart Failure, Afib, valve problems and cardiomyopathy. I can no longer care for him and was suicidally depressed. He is very depressed as well since he has lost almost any movement and he can no longer come home and care for himself but he’s clinging to the idea of being home in 90 days. I don’t want him home any longer, I believe the MS has gone to his brain his behavior has changed, he is terribly depressed and agreed to see a therapist, he ignores the fact that my heart condition prevents me from taking care of him and I have no money to get 24/7 care. I am ready to walk away but I cannot walk away from a man I have lived with and cared for for 40 years, and really cared for for at least 10 years full time, mean, ornery, unhappy, abusive and I don’t even know who he is anymore. I am enjoying his absence and have decided that I no longer want him to return home, I cannot deal any longer, it will kill me, I want a life for the last few years I may have left. I feel guilty, how do I make him see the reality of the situation?
I am glad that you have become clear on what you need.
And the only way forward- the only way to keep yourself intact and clear- is to be honest. I suggest looking to see who would be with you when you tell him this: a strong friend or relative, maybe a community member that you both trust (pastor, rabbi, etc). If it were me, I would need to write down what you need to happen, why it needs to happen and how you want it to happen. I suggest avoiding blaming him, but saying that x is something that you are not willing to live with anymore.
I also suggest a couple of counseling sessions (or preferably more- it sounds like you have been through a lot, and still are going through a lot) for you to really get clear that this is a *need*, not selfishness. If you’re not clear that this is survival mode, you might fall back into staying out of guilt. That will not be helpful.
He may wake up and promise to change. You need to think about that in advance too, my dear. How do you feel about that? If he is shocked and accepts responsibility and works hard to change, is that enough for you? Get crystal clear on what you need, and don’t be shy about being honest and firm about it.
I wish you all the best. Let us know how you’re doing. Please don’t harm yourself. What a loss that would be for all of us.
Love, Cecilia
I read the posts which helps me to re-set my self, but today is the first time that I have felt helpless.
I was helping my wife transfer from toilet to wheel chair when we both fell. For the first time in ten years of helping her I was unable to pick her up and get her into her chair. Eventually my 15 yr old son arrived and between us we managed. And now I’m unsure how I will be able to care for her when I can’t pick her up. It had been getting harder but today was the first time I failed pick her up. I’m tired, my soul is tired. It’s snowy and cold here in northern Ut. Alas Daytona was today, that means spring is soon to follow. Just had to get that out. I’ll be ok.
My husband has been totally bed ridden for 2 years. We tried nursing homes, but they were awful. He has been living with me for the past nine months with no help from his family or mine. I can’t afford it, but i think i am going to try him in his own apartment. And try to get some caregivers to come in and take care of him. I don’t want to leave him but he is a very heavy burden for me to care for. I want to lead some sort of a normal life. Has any one else tried this? Or does anyone have any other ideas.
Hi David! A similar thing happened to me and my husband, only he had slid out of his shower chair to the floor. I had to ask my then 17 year old son to help me get his naked father into his chair. I’ll never forget it, because I had always tried to protect and shield my kids from this part of caring for their father. I felt like I let my husband and my son down. My husband was totally against me bringing in help, but I realized then that I had to. I couldn’t do it anymore.
David, I’m not able to help you, but I can let you know that you’re not alone and many of us have been in your place. It helped me anyway. You will be okay, but don’t forget to take care of you. Spring is coming.
//Linda
I worry about this too. My husband has fallen several times and it takes a lot of patience and time to get him rested enough to help me get him up. I do know there are lifts that can be purchased or rented to help lift some even from the floor. We used them at the Long Term Care Facility I worked at. I know that the paramedics will come and help if you can do it and I have been tempted to call them but my husband becomes very upset when I want to call them and with letting him lay where he is for about 30 minutes he seems to gain enough strength to help me. Check with MSAA about what is available to help you.
David:
I am glad that you felt comfortable using this site. Please, do not blame yourself – you are doing the best you can. Have you thought of using some form of assistive devices — there is one that is called a hoyer lift. It takes a little time to learn how to use – yet is extremely helpful and will save you from having to put yourself (and your wife) into a dangerous situation. When the time comes – I will be getting one of these – they are helpful to lift/lower people into bed, the toilet, a shower chair, etc. Generally, it is most helpful if you have a 2nd person available to assist. Do you have the option of having someone come in to assist? Bless you for being there for your wife. Remember to take time for yourself – I know how hard it is — yet, we as caregivers need to keep our individuality and know that there is help out there from others.
Hang in there David. Find out if you can get some training in learning how to lift and help people transfer and walk, etc. I just finished an HCA (Home Care Aide) course so I can take care of my ex-wife and help her stay in our home instead of her having to move into a nursing style home. They teach you all sorts of techniques to help people get up, transfer, roll over in bed, and even help from a fall.
My sister has been taking care of her quadraplegic husband for over ten years and she had to learn early on how to lift him or re-adjust him properly so’s not to hurt herself. She’s about 5′ 9″ and he was 6’4″ and well over 200 lbs….
Ask for help. Ask about a gate belt.
hang in there….
John
My husband is in horrible pain for a week and a half. As you all know the mood alters with this pain and I feel like the punching bag again. Insulted, told I don’t care, uncompassionate, the list goes on. I’m pretty strong most of the time because I know it will pass. I decided to stand up for myself and just ignore him. He says he’s crying out for affection and understanding but when I try he denies it. This is so confusing to me do I just cave in and forgive or is it okay to stand my ground. When I’m told I need a hug you idiot with tears in his eyes, call me crazy but Its really hard to be compassionate. Any thoughts? I know it’s the rollercoaster ride.
Dear Karma,
I know what you’re going through. It’s a very lonely place to be and a no win situation. So often it’s like this for us humans, we hurt the people closest to us and thusly it is we, the caregivers, that become the emotional punching bags for the people we care for.
What I did was try to talk to my husband about it. Unfortunately, in my case it didn’t help, but I’m glad I tried. I can honestly say I did everything I could. Said everything I could. I would suggest that you do the same. My husband either didn’t have the empathy to understand that our whole family was in pain or he was in too much pain himself to see. Regardless… I honestly tried.
And so I suggest… do everything you can to make him see that you love him and that you’re in pain too. Using you as his punching bag doesn’t help his pain and only results in more pain. It may help, but if it doesn’t you’ll have the peace of mind that you tried.
Hugs.
I have been reading through the comments on this website and I must say it is so very sad, but at the same time it is encouraging to read about other peoples struggles. I have never been very outspoken about my situation so this is one of the first times I really express myself to a community such as this. It seems to me, from reading through the comments, that most of the people here are about middle aged, and caring for a spouse, older parent, or child.
My mother has had MS for nearly 30 year’s. I am about to turn 25 this summer. My father left when I was very young. She was still commuting to work in Manhattan at the time, and was very independent. My mother and I always lived alone. I began helping her with basic functions as early as 8 or 9 year’s old. The only people we had to count on were my two grandparents. My grandfather always drove us around and took us wherever we needed to go. Sadly, he passed away suddenly when I was only 10. The entire burden then fell on my grandmother and I. They never had a very close relationship, so they constantly argued and abused each other verbally which drove me crazy.
By the time I was 16 she needed a wheelchair to move long distances. She was still able to walk around the house with the help of a walker, but had occasional falls. She has broken her ribs on two occasions along with many other bumps, bruises, and cuts. I got a car at 17 which was a huge help.
Emotionally, I didn’t know how to deal with things. Our family never bothered much with us and I felt so lonely. I live in a very urban area so it was not difficult for me to get out into the streets to drink, smoke, get into trouble etc. I probably developed a bit of a drinking problem that may persist to this day, but I don’t consider myself an alcoholic. It is just how I cope.
2.5 year’s ago I got us a bigger apartment, and moved my grandmother in. She was commuting back and forth nearly every day except when she slept over so I thought it would be best. Without my grandmother I would not have been able to go to college. I would not even be able to work. My mother can no longer walk. She has trouble transferring to her wheelchair or to her commode when she needs a toilet. She can never be alone. My grandmother just turned 81 year’s old and is no longer in such great shape herself. She has no major issues, but she really is not in any condition to have people relying on her for help. Caregivers come for several hours during the day to help with bathing, dressing, and cleaning which we could not do without. She falls occasionally when her and my grandmother are alone. They have no way of getting her up off of the floor without help. Sometimes if I’m at work or not in the area my grandmother has to ask neighbors or even random people walking the streets for help.
I do all of the shopping and most of the cooking, and handle all of our finances. I also need to help with ADLs such as dressing, toileting, and bathing on occasion. These things bothered me at first, but now they feel quite normal. Neither of them ever leave the house without me so I need to take them to all their doctors appointments and whatever else it is they may want to do. I graduated from college a year ago and have been working as an engineer since last May. I spend all day at work then come home to more work. I have been depressed for year’s. I envy all of my peers who do so many things. They go places and form relationships. I have few friends, very little social life, and have pretty much given up on trying to have a girlfriend. There is just not enough of me to go around….
I want to live my own life so badly, but I cannot imagine sending my mother to a nursing home. I was naïve growing up. I used to think I would be able to pay someone to take care of my mother. I didn’t realize how bad she would really get. If something was to happen to my grandmother I don’t know what I would do. I don’t want to give up my career because I love my job, but I know I will need to make some decisions. I just don’t know how long to wait. Should I wait until my grandmother can no longer help out? Things are already dysfunctional as is so how long do I wait? I just feel so old and I feel like my life is passing me by. My mother loves me so much and she is so attached to me my heart is completely broken. I feel like I have been the parent for year’s now when I really needed a parent of my own.
Not sure what I’m expecting out of this, but it feels good to vent a little.
Chris
Hi Chris,
Its good you took the time to write. Were at the same cross roads. My wife has MS, and has had it since the eighties. She cant get around anymore, and cognitively cant even carry a conversation with me anymore. We are like you in many ways. Although there are still some of my siblings and some of hers around, they are of little help. Its definitely lonely!
I have decided that I have to start looking at nursing homes to get a feel for what is out there. So far I find it emotionally draining just to go and talk with them, because I cant include Patti in the search. My goal is to only know that I will have a place if and when I cant take it any more or I am no longer able to help her. I tried explaining this to my wife (patti) but it backfired and she got so worried she couldnt sleep. She just cant understand cognitively. Luckily the next day she completely forgot about it, I guess I cant thank the cognititve problems for that.
So now I am on a very lonely task of finding a place for her that I feel comfortable with. I’m also hoping that I can get some information on respit care while I am out there. I am about at my wits end with caring for her, although I still love her as much as the day we met.
You’ve done an amazing job for someone your age, or any age for that matter, but now yu need to find a way to ask for help. I wish you the best my friend.
Rich
Rich it is very hard to deal with the MS on a daily basis My husband has Ms and we found out in the 80’s on our 15 wedding anniv.We cried a lot and then looked at each other decided to rule it,But that is getting harder because is getting worse everyday now his memory is starting to go and he tires so much easier,than he used to,it so hard to watch him go down hill from being so virbant and he is in a wheelchir,I keep going knowing my Lord will help me.There is one thing we did about 1yr.ago we took and found a Retirement home that is also a nursing home by that I mean we can live together in ahouse by the nursing home it is called Independt home living you have an aid that will come andtake care of him clean house and yet we can still join in all the nursing home activities and when he is so bad that independ livining is no longer an opition they move him in the nursing home, we already have an application in.My mother in law was in a retirement home and got wonderful care maybe that is something to think about.
Help i am a ms caregiver and the mood swings from my partner are always directed at me and my seven year son, its so hard on me. I have a huge heart and it hurts so bad to hear how miserable we make her when i know the real her would never say that or feel that. I have been told by her that i am her angel and no one has ever loved her like i do. I don’t know in to deal with the pain it causes me
Wow – I’m overwhelmed which the sharing on this blog. My wife, Chris, has MS and is confined to a wheelchair. She has no use of her legs nor right arm. She is also now struggling to sit upright. We too argue over how I care for her (don’t throw me around like a piece of meat) and I certainly don’t always feel appreciated. There have been some things we have done that has made it easier: (1) we put in a lift system (Waverly Glen – PRISM Medical) in 4 rooms of our house = $8,000, (2) remodeled one of the bath’s to make it handicap accessible (shower too), (3) bought a handicap van, (4) put in a ramp, (5) bought as portable lift to use when on vacations and (6) hired support for approximatley 20 hours a week. I still have the night watch which can be challenging when she has me up 6 times a night. I can’t imagine life without the support now. The 24/7 was really wearing me down and wasn’t good for Chris as well. She has great relations with her other caregivers that go beyond employment . They have become her friends and advocates for her care.
Wanted to share how we can improve communication as caaregivers. Focus on not talking as a parent or boss. Don’t whine like a child or as a victim. Have adult conversations. When your mate whines or acts like your boss respond with adult conversation. This will change you first which is what you control and give more peace within you. I can tell you it works. And after time will work for your mate as well. This is work that is worthy of the effort. The problem doesn’t go away but life will be better for you.
Hello after reading some of the other post glad and sad tha others have same issues I have my wife is 48 has had ms 23yrs is currently bedridden and n nursing home (physical therapist broke her leg ) she hasn’t walked since 2005 I am very lonely even when she is here I feel guilt sadness resentment and frustration caregiving sucks and is hopeless it’s really hard to watch some one die slowly we have recently got divorced for insurance reasons but I need more out of life just don’t know what to do can anyone help
Good advice, Martin.
My wife of 39 yrs has ms and is confined to a wheelchair. I was her only caregiver for the last 3 yrs and now I have help 4 hrs per day. I am now getting burnt out. I think one of the hardest parts is that now friends and family stopped calling I think they don’t know what to say which I understand but provides little support.
the biggest challenge for me is her loss of her mental skills. responding to orders all day is difficult.
i’m very fit for my age so the physical part is not a problem but the constant giving of orders and seemingly not concept
of what it requires of me is now taking it’s toll. I am now sharing because I need to be able to vent somewhere. sorry to start with such a negative post but I have to say, it helped just to be able to type this and have someone
with some understanding on the other end.
Thank,
Tom
As Bill Clinton often said, I feel your pain. My wife of 44 years is also confined to a wheel chair with only use of her left arm, head and shoulders. I too have felt burned out at times and find the 18 hours of caregivers a week a welcome relief. We did invest in a ceiling lift, walk-in shower and comfort level toilets which has been extremely helpful. We also found a portable lift that allows us to take vacations. I too struggle with her “directions”. Many differences are just man versus woman but, her need to control those things that she used to do, and the way she did them, has caused many “discussions”. We continue to work through the differences and hang on to the positives which include family, friends and a forgiving Father. I did find the book Joni and Ken by Ken & Joni Eareckson Tada helpful. She has been a quad since the age of 18; he married her at age 30 and the story is one of struggle throughout their marriage. They have been married 30 years.
It is so important for each of us (caregivers) to have a safe place to voice how we are feeling. It helps so much to know we are not the only one feeling these emotions. Loneliness is one of the hardest things to handle. This is a tough time of year for all of us.
I know how hard it is my husband has MS and this time of the year is very hard on him both of his parents are gone and both of mine are gone now, And I really like Christmas not for the gifts but the true meaning of Christmas .
My husband of 39 years finally ended up in a nursing home last year. He has PPMS and it finally got to the point that he needed more care than could be provided at home. It took a while to adjust but we both know it was the only choice. I was sooooo angry or so many years, exhausted and frustrated being the sole caregiver. Thank God things have gotten better. All of you who are doing this with limited help, please please take care of yourselves. Mty stress contributed to a heart condition and I had open heart surgery and died on the table. Your loved ones need you, see a therapist, talk to a friend, pray, live yourself too, I did all the wrong things thinking I was doing the best for us, now I do the best for us and try to create a life where we live apart, thankful for life and love.
I haven’t written in quite some time, because it’s hard. As I have said before I love my precious wife so much. We’ve been married for 31 years, wonderful years. However lately it’s become a real drain with no relief in sight. My wife is only 52 yrs old. She has all of her mental facilities, and this wicked disease keeps taking more and more from her. She now can hardly do anything for herself. I know that it pains her not to be able to do things. I have become a fultime caregiver, and fultime worker and dad and grandpa. Where does it end. I’m up at least three to four times a night to adjust her because she can do nothing for herself. We can get no assistance because of my income. I’ve been told that I should look at a divorce to see if that would give some assistance. She does not like that idea, I’m not going anywhere but I need the help. If she did not have her mental facilities yes I would put her in a home to get the attention that she needs and deserves. I’m just getting tired and know that a year from now I will be completely worn out. As of this date Dec 14,2013 I’ve had a total of 7 days away from her. 4 of the 7 were for business. 3 were me being desperate and had to get away. I’ve got to do something.
Lou
My wife was diagnosed in 2001. She went from relapsing remitting to secondary progressive in 3 years. At the time her 3 children, my step children, were 13, 12 and 11. I raised them without any help from their mom.
She never did anything to try to make herself feel better. She refused to exercise, eat better and maintain some kind of social life.
I have at times worked three jobs to maintain the household and feel very used at times.
I feel like she didn’t care about herself, her children, or our relationship to try and do something that might have staved off mobility issues. She is not in a wc but does use a walker.
The MS never bothered me, in fact I know that I know much more about it than she does. It is her attitude that I find harder and harder to live with.
Your caregiving activities are very similar to mine. I retired early to take care of her. I do have 20hrs. Of caregivers per week which gives me (and my wife) a break. Hang in there.
My husband was diagnosed in 1983. One year to the date of our wedding anniversary. I was only 22 years old and he was 28. The first 10 years were relapsing remitting. He then went to progressive. He went from a cane to a walker now in a wheel chair. I am the only caregiver so everything is on my shoulders. I always put the disease in the back of my mind for 31 years.
Trying to pretend it was not really happening. The disease is progressing at faster rate and I am scared. I gave up having children because his father had M.S.. He did not want to give it to his children. He did ask me to leave but I refused. I have no family close by and no help. My whole life has been working 2 jobs and taking care of him. I guess I am having a pity party for myself today. I do not know why at his juncture of my life why I am feeling this way. I never complained or asked for help. My whole life revolved around him and his disease.
Now I feel like I want to go out and enjoy life. I love my husband very much and hate this disease.
This website is exactly what I needed. My sister who has had MS for the 12 years just moved to live by me as she cannot care entirely for herself. Her husband divorced her about a month ago. She has her own apartment in the same town as me, but my husband and I provide transportation, cook for her, and provide some medical care. I don’t mind helping her with things for a few hours each day — I am not a full-time caregiver as many of you are here. I need to realize that for her, everything is in the moment — she doesn’t see that I spend lots of time helping her with things each day. I also need to realize that she has social skills deficits now related to the MS. She can be very demanding, asking me, for example, why I didn’t do a particular thing for her when she didn’t even ask me to do it. She thinks perhaps that she asked me when she didn’t. For this new year, I have planned to see a social worker to help me cope with these changes in my life. I am also looking into an MS support group for caregivers. I work full time and have a teenage son that I want to spend time with too. I think it’s hard too because my sister was abusive to me when we were children; she’s one year older than me. When we were children and teenagers, we hated each other. For the next 25 years, we were estranged from one another, talking to each other 1-2 times/year. Now I am her primary caregiver, with no other family members willing to help, and all living at least 800 miles away in other states. So, this is a big change for me. The other thing that I am finding hard is that my sister doesn’t realize that she has serious cognitive deficits. She realizes that she has memory issues but doesn’t see that she has poor comprehension, poor judgment and decision-making, and poor abstract thinking skills. She is trying to date people now that she’s moved here (she’s 46) and is distressed because they are all only 1 date. No one calls again after meeting her. So, this is a challenge for us too. She sees herself as only impaired in terms of mobility. She doesn’t realize how much she has lost in terms of cognitive skills. I’m not saying it’s not possible for her to meet someone for a romantic relationship but she presents herself to others in terms of her previous cognitive skills (e.g., college graduate, attended law school). So, I’d love to hear from anyone who has gone through a similar situation of becoming a caregiver for a family member who you hardly know and don’t have much affection for, and/or people who have helped an individual with MS come to develop insight into their disability. Thanks!!
Mine is a similar story. The main difference is that I was able to take early retirement to take care of my wife. She is wheelchair bound and can only use her left hand.
Lynn, I am so glad that you were able to find this site. My husband was diagnosed with MS in 2001. Up until about 2 years ago – he was doing fairly well cognitively. That is not the case anymore. He now not only has ALOT of memory issues – he also does not realize that he has some major problems with reasoning, executive decision making, personality changes…..I love him dearly and am in this for the long haul. I am mostly adding my comment so that you would know others are dealing with these issues and will be able to understand how you are feeling. His comments don’t make much sense anymore. He has to much free time on his hands during the day at home while I run a business I started 2 years ago (allows me a little bit more flexibility to get to his appointments and deal with daily issues–like 5-10 phone calls a day). He now rummages thru things in boxes and then sets them out (more dust collectors – and he doesn’t dust). He will try to do laundry and leave the clothes in the dryer to wrinkle or hangs them up wrinkled–then does not seem to comprehend why I wish he wouldn’t do the laundry…What helps me is that I learned as much about MS as I possibly could and then became a group leader for a local MS Self-Help group. This helps me stay a little more understanding about what is going on. I have determined that I “need to pick my battles” and for the most part – that works. His driving is not that great and scares me — so, I have decided not to ride with him. We either take 2 vehicles or I drive. I don’t expect him to cook – so, I do a lot of week-end cooking and freeze things to be re-heated after I get home…Remember – being her caregiver does not give her a license to abuse you. There are many different agencies and groups that can assist her to allow her keep as much independence as she can and allow you to not over extend yourself. Take a deep breath and take care of yourself, your husband and son also.
HI, Pam,
Thank you very much for your comments. You are right in talking about the need to “pick one’s battles.” I think I’m particularly overwhelmed right now because so much is new. We are arranging for her to get medical coverage, trying to get an order to vacate the dissolution of her marriage (so that she can receive some maintenance from her ex-husband rather than the no maintenance that the judge granted her), and also just working on setting up things for her in the community (e.g., some volunteer activity, library card, meeting new people). She’s only been here a month so there’s just a lot of things and a lot of stress right now. Having the holidays didn’t help much as there were days when offices were closed and also the holidays brought her a lot of sadness due to the rejection from her husband. I have ordered a book about cognitive challenges in individuals with MS that I hope will help me learn more both how to help her and also how to not get frustrated with things that occur. Thanks for your support. I wish you moments of peace for this coming year.
Regards, Lynn
I can relate to the negative attitude as my wife of 45 years reacts similarly. I do now attribute it to the disease and try to bite my tongue as much as possible. It is hard to do and we still argue a lot; caregivers have rights and feelings too. I let her know when she crosses the line. It mostly happens when she is being “anal” in my view and criticizes every thing I do.
Pam, I found comfort in your post. My husband of 22 years was diagnosed in 2004. The hardest part for me has been the loss of some cognitive functioning. We are both in our late 40’s and it sometimes feel like I am dealing with an elderly person. I love him very much and will always be by his side. It’s just hard not being able to have a meaningful, engaging, intellectual conversations. In order for me not to become frustrated, or saddened, I have to keep most conversations light, generic and about routine mundane things. I know it’s not his fault, and I have to remind myself of that and just pray for strength and guidance on how to handle it. I miss the old him so much. Every now and then, I see a spark of his former self in a witty comment or joke, and I thank God for those times. I have just resigned myself to the fact that I have to make all the important decisions, choose what we do, handle the finances, meals, and running of the household…Everything. Sometimes it’s so overwhelming. He can walk unassisted and still drive, but I worry when he does. I drive if we go somewhere together, and he’s okay with that. He wants to work but hasn’t accepted his physical and mental limitations. It really helps to have a place like this to vent, where other people understand what I’m going through. I wish we were all in the same location :-) I meant it when I said in sickness and in health, so I’ll continue to do what I vowed to do.
Charley
I have the same problem with my husband he criticizes things I do that he never did before he had MS, after so many times of biting my tongue I have to let go and when we argue it seems unfair I can’t get through to him what I am saying ,and again I am wrong and he is right so I give up.
Charley,
I think that my sister criticizes me because she’s often feeling powerless — she feels like she can’t do a lot of things and I can, so when I make a mistake in her view, she wants me to know it so that we are on more of an equal basis again. Of course, knowing this rationally doesn’t always help me to not get upset when she criticizes me! Understanding where the behavior comes from helps some — I guess I need to try to get enough sleep so that I’m able to be more patient and “bite my tongue” as you say. Thanks for helping me see that what I am going through is common.
I guess that we are the ones that have to adapt since we are the ones without the disease. Misery does enjoy company so thanks for sharing and good luck.
Good luck. It is a terrible disease that brings out the worst (and sometimes the best) in all of us.
Hi Lynn,
What is the title/author of the book that your ordered about cognitive challenges in individuals with MS?
Lou – ditto on your experience. My wife went to being an active woman (working, church, sewing, music, family) in 2004 to being wheelchair confined with only the use of her left hand. I, like you, have to get up several times a night to adjust her in her hospital bed. Some of the saving graces for me is (1) an overhead lift in 4 key areas of the house; (2) 20 hours of caregivers per week; (3) she still has her mental capacities and can see and hear normal; and (4) I was able to retire early to care for her. It’s been an experience learning how to cook and clean after 45 years of marriage; especially to her “standards”. We did find a portable lift that we can use on vacations which has been a godsend (we went to Branson, MS this year). Good luck and keep the faith. It’s a terrible disease.
Hi, Marchelle,
I just got it yesterday — it’s called: Facing the Cognitive Challenges of Multiple Sclerosis (2nd ed.). It’s by Jeffrey Gingold, published by Demos Medical Publishing, 2011. I just ordered it from Amazon. Haven’t started it yet but it looks informative.
This site has been very helpful. I married a man with MS 2 years ago. First marriage at 48 years old and I did not know what I was getting into. I hate getting angry at him when he forgets things or just doesn’t think right. He has a great sense of humor and he walks without a can. He was diagnosed when he was 27 and is now 54. He is a tough guy and continues to do what he can. Not able to drive due to color blindness and other things, but does very well compared to what I am hearing or reading others describe what their spouses can or can not do. It makes me feel grateful. The forgetfulness and cognitive stuff is a struggle for me. I am going to check on the book you ordered. My husband does soduko to help with his memory and seems to enjoy it, but I do wish he would get out and volunteer and be around other people and socialize. I work as a clinical therapist part time right now ( took care of my father until he died in October of 2013). Hoping to continue to build clientele to full-time, but we are good for now. Looking for a support group, but I may need to start as I do not see one in this area. Thankyou for listening.
Good luck. You may want to go to one of the dinners offered via tha MS Society. We’ve met a lot of other people in our shoes (plus a free dinner and program by one of the drug companies).
I am in a similar situation, and have also not written for a good while, but your entry hit home and made me feel so not alone at the start of a new year. My husband of 31 years has had PPMS for 15 years. I have raised 2 kids, who are now young adults, and supported the family for most of this time. Exhausted doesn’t begin to touch on where I am at this point in my life. It’s a sad irony that as I get older and have less energy, my husband’s care needs get greater and almost require a younger wife. Also we have become more isolated as his condition progresses, and have lost many of our friends over time, just as I need more help and support than ever. I am in such need of time away, even a day or two…. also feel like I’ve got to do something, just can’t figure out what, when, or how.
Carol
20 hours a week of caregivers have been a godsend to my wife and I. We did learn to stay away from the kids though – they don’t want to work.
We did go to one of those drug company dinner’s and that was very helpful and comforting to be with others who are dealing with some of the same issues. Again I am feeling grateful today because my husband is outside in this below 0 temperature, clearing the driveway off and putting salt down, taking the garbage out and walking down the hill without a cane or walker to get the mail. I know his condition will worsen over time. He takes 30 pills a day and gives himself a shot 3x a week. He is a tough guy and we have had to go to the ER for pain management and BP issues. Sometimes I think that his memory problem is a combination of the MS and all the pain medicine he is on. I will check and see if the MS Society is having a dinner anytime soon in out area. Take care everyone!
my husband has had been diagnosed with ms since 2000.
he was doing most things normal, had fatigue – yelly like legs at times and numbness in his hands.
later on got dizzy and walked like a drunken sailor.
he had to walk a lot at work and had trouble doing so.
-when he fell at work he went to a neurologist and got diagnosed. that was in 2000.
now 14 years later he is in a powerchair…..he can walk some steps to the powerchair with the aid of his rollator or walker.he has a catheter and has to sit to take a shower… .we have grab bars in the shower and I have to help him dry himself and dress. actually I do everything for him.he sits in his liftchair all day every day. we do not have any friends or family come visit us….my son married and moved away a few years ago..my husbands sister moved last year after she retires…they are too far away to come and help me if there is an emergency…..over the last few years as my husband got worse I had to deal with him falling and helping him to get up….one toxic bladder infection and kidney failure (he has a bladder infection every month because of the indwelling catheter),having to deal with every decision myself and doing everything in my household and yard by myself…he almost died from acute kidney failure ,frequent E.R. visits with high fewers because of the toxic bladder infections..no one to go to the hospital with me ….it goes on and on …there is never a getting better but he gets worse and worse. skin problems..hygiene problems….he was recently diagnosed with sleep apnea…now he has to wear a mask to bed which is a pain ,because it leaks air all the time and has to be adjusted..the doctors do not understand what we go through at home nor does family…he spills and drops and breaks things all the time and I clean up the messes…I can not have a normal conversation with him anymore…he does not understand me..or repeats again what I just said ,or argues about not understanding right …it is a chore to have a conversation….I feel, that i’am living with a child and not a 64 year old man…..i’am getting on in age i’am 48 now and have possible fibromalgia,i’am in contant pain ..my muscles hurt in my whole body and I also have joint pain from arthritis….i’am so exhausted all the time physically and mentally…I probably need an antidepressant so I can cope…I just got off Zoloft and now I can hardly cope with my husband, household chores and making decisions….he is hard to deal with will not exercise and do what the doctos and nurses tell him…which is so frustrating to me ..I keep nagging him and yelling at him and telling him that if he does not exercise he will end up in a nursing home ..but nothing helps ..he does not change..this is so hard to deal with his total lack of drive and motivation …he is not even throing the ball for our dog because he says bending down to pick it up from the floor hurts his catheter…we have no marriage really in no sense of the word…what a life…I almost quit and put him in a nursing home …but I just can not do it…I worked in some homes as a housekeeper and they are terrible…but every time something new crops up with his health I panic…this disease is licking me….we stay up all night and sleep some till noon ….everything is turned upside down…
Petra, my heart goes out to you. The situation with my husband almost parallel’s yours and actually is identical in so many ways. I keep waiting for a major life change, but each day is slow and progressive, and the episodic health crisis only lead to a worse baseline but not a major change in situation. I have begun to try and focus more on quality of life rather than length. My husband also was diagnosed with apnea a few year ago, but the mask is so disruptive to his comfort sleeping, that he doesn’t use it and we have accepted that it is a quality of life trade-off. He sleeps in a hospital bed and the incline helps with the apnea, but he sleeps so much more peacefully without the mask limiting his movement and making him “feel more confined”, since the MS does confines his movement already so much. His diabetes and b/p are also health issues we try to manage, but not at the sake of any pleasure he gets from day to day activities. It is difficult, if not impossible to figure out what to do to make things better, I just hope some magical answer will appear. My prayers are with you and all my fellow caregivers who are so challenged.
To the both of you My hat is off. I know what you are going through. Im digging the same with my wife. The marriage is managed care. As i said before. Her mind is still strong but her body is gone. I do it all for her. A nursing home is still out if the question. Im sitting in my car writing because as soon as i entrr the house my next job starts.
Hang in there. Im a man handling a woman. You are women handling a man. Thats got to be hard. Im a Law Enforcement Officer and in decent shape but i still hurt from the daily lifting (and we all know therr is no day off). I was at the doctors office the other day and he flippedly asked how are you doing? I knew it was just routine. Unless you are real ‘ll y where we are you really dont have a clue.
Again my best ti you both.
Lou
thank you carol…it seams,that you also have to deal with diabetes and high blood pressure.
it is so hard to deal with MS ,but if other major illnesses get added to it it is overwhelming.my husband has kidney and bladder control issues.he has problems with itching at times that makes him scratch until it bleeds with a rash that sometimes lasts months.sometimes he develops a hacking cough from medications for days on end till we finally figure out that it is the meds and take him of.
he also gets edema in his feet mostly and at times it goes up his legs. now we have an issue with his feet sliding and trouble standing when putting his sox on by himself.i end up doing it for him….he tried to go sit on the toilet without using his rollator and fell and broke the toilet tank…he did not ask my help…..I must always be on the ball and alert to catch every little change in his behavior and health..because if I wait too long things could creep up suddenly and become life threatening in no time …to go to the E.R. or not that is the question…thank God that I know a lot of the symptoms he has and what they mean…i’am just happy when all is well at the moment because it could be worse…thank you for your prayers…will pray for you also.
lou
thanks for your reply….my home looks a lot like a nursing home …we got a lot of handicapped equipment some from the VA because my husband was in the military he is a disabled vet….some I bought on line…I purchased a hoyer lift on amazon to my surprise it was very affordable…also got his lift chair on line…got a credit card and make payments….after his falls I could not lift him and hurt myself trying to do so..so i got this hoyer lift it is a God send ….works great for us..i knew how to work it, because I used to use it in a home for the handicapped, where I worked in activities for a short time…I put it together which if I can do it, anyone can….he has not fallen since he has his catheter in (holding urine used to turn his legs into stiff unbendable pieces of wood )he sits and he also uses his powerchair in the house now to go to the bathroom to empty his bag….the doctors never have a clue what we deal with…sometimes I do not think that they listen too well. they do not have any answers either to most of our problems..they just call them chronic problems and suggest a nursing home if I can not deal with him…but that is not an option for me right now ..I keep him with God’s help as long as humanly possible…
I am so glad to have found this site! My Dad was diagnosed with progressive MS in 2007 at the age of 57. Being a proud and stubborn man he lived in denial. He worked for as long as he could, but ultimately had to go on disability due to fatigue and mobility issues. By 2010 he needed a motorized wheelchair to stay mobile.
However, he always insisted on using his legs whenever he could which resulted in numerous falls. In the beginning he lived at home and had a friend staying with him. He has never fully accepted his condition and is angry most times. The mood swings became unbearable. He rejected any form of help and eventually his friend moved out. This left me in a bind as I’m an only child and my parents are divorced. I also lived out of state so when his friend decided to move out I had just closed on a house! Knowing that my dad shouldn’t live alone I hired caregivers, but that situation didn’t work out as he kept firing them. A few months later he moved into an Independent living facility and we had caregivers coming in. We let the house go into foreclosure. The living arrangement was expensive as I had to keep adding on services and my dad was steadily progressing and needed help with everything. I didn’t know how bad he was getting. He was only in Independent living for a little over a year, before he got worse. So bad in fact, that he developed a stage 4 bedsore and it became infected. He is alive thankfully and doing well, although the doctor has already told me that the womb will never heal 100% so it will require constant monitoring. This has not been an easy time for me. I took 2 months off of work to make arrangements for him to go into a long term care facility and organize his affairs. I have no support, work everyday and his needs have become too great for me to take on single handedly: his dressings need changing daily, he needs to be rotated every 2 hours, the catheter needs to be emptied out, can eat solid foods, but is on an IV and feeding tube to help w/ the extra nutritional needs to heal the bedsore from “inside out”. Honestly, the rate of his progression has taken me by surprise and it’s a lil scary. His mind is still intact aside from memory issues. He calls me everyday from the prepaid phone I bought from him. Living out of state I have less anxiety knowing hat he is now in a facility where his medical needs can be attended to. He has friends and family visiting him frequently. Dealing with a loved one who has MS I have learned to take one day at a time. It’s really all you can do. I am grateful for everyday that my Father is still here with us.
Nikki,
How do you find the care that he is receiving? I have heard nightmares about this and my wife is deadset against going into a facility. For now that is O.K. but, if she gets much worse, we may need to rethink it.
Hello evertone,
You cant believe how happy I am to have found this site.
at least now, I know I am not allone.
I’ll post as soon as I find my way around here. I am still trying to figure our how to start a new thread,
It’s been a while since I responded on this website. My heart goes out to everyone. I think the one day at a time does help and appreciating what goes good or right during the day with your loved one or spouse. My husband was diagnosed with MS at age 27 and he is 54 now and doing well compared to what I am hearing from everyone else. He had to go on disability 7 years ago and is not able to drive now, but otherwise he is fairly independent. The pain effects his left side and some days it is worse than others. We are really having a difficult time with high blood pressure. Doctors do not know what to do and he has been in and out of the ER/hospital a couple times this year. I am working part-time, but need to find a full-time job, but have concerns about working full-time and being their for him. We will be moving in with his dad which could be good and bad. He will be with someone during the day, but his dad has health issues as well. His wife died a year ago and my father died in October, 2013. My mom has health issues and is currently living in an assisted living facility. I try to be there for her as well. I have no right to feel I am sinking or stressed or depressed when I read what some of you are going through. This is a good sight, but I do wish there was a support group for MS or just caregivers that people could meet on a monthly basis. It is so important to take care of yourself. Thanks for listening. kathy
I need to make money and take care of my husband who has relapsing MS. Help?
Hi, My name is Debbie and I was wondering if any one has figured out a way for us to make money caring for our loved one. I am sure that if I were to go out and get a job
doing the same thing I would get paid but being here 24/7 provided me with no out let, and no money. Help
My wife had severe pain (level 10) in her right arm up to 6 times a day and up to an hour in length for 2 years with little help from traditional pain meds. She too had high blood pressure issues caused by this pain. Her doctor suggested that she go on Tegretol (both chewables (100 mg – 1 or 2 as needed) and regular (200 mg – 1 in the AM and 2 at night). She no longer has the pain nor the high blood pressure. She did recently have a hospital stay where they failed to give her this med and the pain returned until she started taking the Tegretol again. Good luck.
I have just found this Site after a very frustrating day/evening. My husband of 33 years has secondary progressive MS. I can barely manage him particularily in the evening as he is unable to do much of anything. He is unable to eat himself, cannot walk, cannot easily transfer and has huge cognitive impairment. I continue to try to maintain him at home but am reaching the end of my rope. He cannot be left alone anymore. I am 70 and he is 67. We have discussed placement but am unsure what he really grasps. This is such a monumental decision and one that I will have to make myself. There is very little family support. If someone has any insight I would be grateful.
Thanks for this site and God bless all of you. I know now that I’m not alone..
I’ve read all of the posts and I noticed several mentioning loneliness and isolation. My husband tries but can’t understand how I’ m feeling. He was diagnosed a little over a year ago but we know now he’s had MS for some time. At this time he is walking with a cane but his legs won’ t cooperate after 10 to 15 minutes. Very little effort to do something fatigues him and he has to sit and rest before trying again. I’m reading about this disease when I can but you are all right when you say most don’t have a clue.
I have a question, and this seems to be where I might get an answer… Its about the mental, and personality changes… My wife of 20 years started changing and acting out in near teenage ways about 5 years ago. I thought it was midlife crisis, booze, drugs, etc… But now, as we have been separated for a year, she has just had an abnormal MRI, and the Dr says its probably MS … Could the disease account for some of her mental changes? She’s 39, and I have been incredibly confused about how she could change so much, and how it seems to be cyclic in nature. Like episodes, and she has complained of numb hands, feet, arm, leg at nearly the same time that she would have the urges to act out, irrational behavior, anger and violence, remembering things that didn’t happen. Saying things she didn’t remember, and remembering saying things she never had……. I love her, and thought I was saving myself from a sociopath. If its the disease, and there’s treatment, I don’t want to divorce her, I want to help her… So, does this sound familiar?
Hello, Ann. My spouse has had MS for 21 years. She’s 55. A year and a half ago, we moved her iinto an assisted living facility. I’m 63. When she lived at home, it use to drive me crazy that she had very few visitors. She has adjusted well to an assisted living facility and the biggest positive has been that she has visitors routinely. At least every other day, not counting my visits. My workload is more manageable of course, but the lonliness and isolation is still around. It took two trys to find the ‘right’ assisted liiving facility, but she is content and has no desire to move back home. She gets around the clock care from caring folks and good food.
My wife has exhibited some of the things that you mention. I am convinced that the disease has contributed to this behavior but the 24/7 care required wears me down as well. Fortunately, we have about 20 hours of caregivers a week that helps. It takes a lot of faith and love.
Hello and thank you to all that have posted here. My wife has recently been diagnosed with NMO, which has been misdiagnosed as MS for years. She has already lost 90% of the vision in her left eye and falls into a 30 percentile group that die within 5 years of the onset of the disease. I do well in dealing with her mood swings most of the time but I do snap once in a while and it scares me. It is not her fault that she has this disease and i feel bad that i get mad at her. I need to know what others are doing to get through it? We have found a ray of hope though. There is a book called The Wahl’s Protocol, by Dr. Terry Wahl. She was diagnosed with MS and ended up in a WC. She began research on how nutrition can heal Auto-immune diseases and she now walks and is helping many others recover from MS through Functional Medicine.
That being said, as much as my wife believes in the Protocol, she is reluctant to fully commit to it and chooses instead to pursue typical western medicine as a solution also.
I am embarking on the diet myself and am reaching out now to establish a support group so as things progress I will hopefully have some place to go and vent, to hear how others are getting through and coping with this awful disruption in their lives and the lives of their families.
God bless you all.
Hi Chris,
This sounds a lot like MS and we’ve talked a lot about the personality changes that can go along with it here on this blog. I think it’s only been recently that they’ve addressed the cognitive changes. I’ll be frank that I had to leave my husband because he became very abusive not only to me, but to our daughter. MS is such a strange disease in that it affects everyone differently. This was my story. I’d say you’re the only one that can determine your situation and whether you should go back to your wife.
Others here might give you different advice, but if I’d like to be honest and say… perhaps don’t divorce, but stay separated and help her as much as you are able. In my opinion it would be more difficult for you if you go back and then decide that you’d have to leave again. Please read through the entries in this blog so you can make the decision with open eyes. I’ve learned you can still be there for them, but you don’t necessarily have to be living together.
Being a caregiver will probably be the most difficult thing you’ll ever take on.
Wishing you the best in your decision.
/Linda
hi chris
there is a lot of info about the symptoms of ms and how it affects people on line…..
personally my husband has ms and he changed physically and emotionally over time…. it can affect a relationship negatively…. it is hard to communicate at times and understand where he is coming from….anger and emotional outbursts are also a fact….it is very hard to deal with for me …very draining…but he needs me and I have to ignore a lot he does or says….it is his illness…
Chris. Sure does seem like it could be related to her MS. It’s a disease of the brain which runs all functions of the body .. Mental and physical…I guess it depends where the damage is.
Hi, Chris,
My experience relates to my sister, who was diagnosed with MS about 15 years ago. I became her caregiver after her divorce, about 5 months ago. My sister has significant memory challenges; she does what you say that your wife does. She says things and doesn’t remember saying them, and other times says she told me particular things, when she perhaps said them to someone else. In terms of personality, I have read that some people do experience personality changes due to MS. There can be scleroses and subsequent loss of brain tissue in parts of the brain related to impulse control, decision-making, and emotional experience and expression. That said, with regard to my sister, MS has just exaggerated some of the personality challenges she had prior to MS. My sister was always somewhat impulsive and self-centered. Now she is more so. She had trouble before with emotional control (could throw rages when she was a child) and now she can get emotionally overwhelmed pretty easily at times, particularly when she gets confused with too much information coming in. So, I guess you might consider what your wife was like prior to MS. Are these behaviors similar (just a stronger form) of what she showed before? If so, I think that it may be that these new behaviors are here to stay. My sister has good days and bad days in terms of her memory and emotional stability, but even on a “good day” the risk of her getting overwhelmed is pretty high. So, I try to anticipate problems and head things off so she isn’t faced with too much at once. I like this site because it is supportive — it accepts people for where they are in terms of decisions related to the person that they care for. Sometimes an individual stays married to a loved one, and sometimes they divorce. My life has changed a lot since my sister moved to my town and I became her caregiver, but I understand why her husband decided he didn’t want to be married to her anymore. My sister changed a lot with MS, in terms of her cognitive abilities, physical abilities, and mental health. She is very different now, compared to what she was like when they got married.
I know what you are talking about. My husband does this as well and it is related to the part of the brain where the MS is attacking. He became so violent one time I had to get my children out of the house he was swinging his cane and hitting us. I would suggest talking to her doctor and telling them the truth. Sometimes we forget to consult the professionals. I can’t think of what it is called right now. I am dealing with him telling me that he is preparing to die and I have the right to prepare to live. I feel guilty but we have been fighting this for years. It is only today that I figured out I was not fighting at all, he has been doing the fighting, I have been trying to support him. He seems so tired and ready to give up. I feel badly wanting him to make him want to continue a fight that has cost us so much.
Thank you everyone for your responses and comments… she went to a neurologist and he said its 99% surely M.S… I tried to talk to her about the mental and emotional effects, but it did no good. I am realizing that she can’t see herself yet.She is focused solely on the physical effects. She can only get around with a walker, and can no longer drive. It seems to have attacked rather quickly. She was walking fine 2 months ago. I offered to delay divorce, offered to mover her back home, but she is not interested. She still believes I am responsible for her actions and acting out… its sad, but I guess I will concentrate on our kids and hope that her family steps up to help her when she can’t anymore… I would also like to say that I find it inspiring how all of you care so much and deal with so much for your loved ones who suffer from this horrible disease… I am hoping that this burden doesn’t fall on our children. At 10 & 13, they need to be kids, not nurses.
I need some help! My husband was diagnosed with MS 4 years ago. I keep questioning the cognitive impact and changes in his behavior. We are arguing a lot more, 1 or 2 times a day. I don’t want to argue in front of the children, but he interrupts me, won’t listen and try to understand my position. He states that I require too many details when he barely listens to anything. It’s as if he loses his patience, doesn’t want to hear anymore and cuts me off or interrupts me or walks away. He acts frustrated or annoyed. I need his help with the children and I feel as if I can’t count on him and I need to do things myself to make sure they get done. He is forgetful; however I used to blame that on his ADHD but it’s gotten worse. Then he states that it’s me and that I require too many details. I am struggling with his symptoms and their relativity to ADHD or MS and I continue to seek the answer. I just want to know for sure. My patience is wearing thin because my feelings are hurt constantly because of his reactions to our arguments. He doesn’t make sense yet he won’t admit or isn’t aware that he doesn’t make sense. He can also be hurtful one minute and 2 hours later want to hold my hand like nothing happened. Very discouraging and concerning. I just want to know for sure it is the disease causing the issues.
I am so happy I found this web site!!! Me and my husband have married for 25 great yrs. We found out he had M.S. About 17 years ago, and the last four years have been very hard . It has now turned to-progressive M.S. ! He has become very mean, and says very hurtful things, I am not even sure if he knows he said them, god it hurts … I try to take care of him but he gets mad. I never know what he wants from me, so I cook and clean and work full time and pray he’s ok while I am away ! He will not drive anymore so I should be happy about that . I have kids 21 and 19 , they miss there dad as much as I miss the man I married !! I am soooo tired of crying. I would be lost if it were not for some very great friends ! Thanks for letting me vent .
Dear Patty,
3 years ago I could have written the same thing. I probably did. I wish I could reach through cyberland and give you a hug. Welcome to this little group of people, where most of us know exactly what you’re going through.
hugs, Linda
Ann: Just wanted to let you know that you have found a great site to vent and to get some ideas. My husband was diagnosed with MS 12 yrs ago. We have now been together for 30 years. In the last 2 yrs – his cognitive issues have gotten a lot worse (just like what you have described). LOTS of forgetfulness and short term memory loss, very argumentative, refuses to admit that he has any issues — then turns right around and expects the words “oh well, I must have forgotten” – to be acceptable. Not sure if you need to “blame” the ADHD or the MS. The cognitive issues are still there no matter the reason. You may have to start working on how you react to it. Not sure you will ever get him to see that he has cognitive issues. If you look at the reason he has the cognitive & personality issues —- traumatic injury to his brain — maybe that will help you. I also get very frustrated and have found that lately – I have been emotionally distancing my self. Think it is a survival thing. Mentally and physically – you are thinking for 2 and doing for 2 (cooking, cleaning, shopping, paying the bills, bringing in the money, taking care of the children….). I have NEVER met anyone that has mental issues admit that they have them and understand why. In a way – it is like trying to reason with someone that has dementia, is drunk, on drugs and a brain injury…—- they “don’t get it” anymore. They may understand that something isn’t right – they generally won’t see that it is them. Is always easier to blame others. Which is probably their way of dealing with it.
Patty: Glad you found this site. Are you going this alone? Does your husband have any family members that can help you out — even if it is for you to take a day or 2 for yourself? It is not selfish to want some time for yourself. He truly is a different person than the one you married. Maybe try to emotionally put yourself into the “caregiver” mode during the times when it is most difficult. If you were around a stranger with a mental handicap that acted the way your husband does — how would you react differently? Ask yourself how you would deal with it – if he had been in a vehicle accident and was changed permanently due to a head injury? I had someone mention to me once that we need to grieve for the loss of our spouse that we once knew and then start a new chapter in our life – knowing we will never get that person back. MS truly affects all members of the family – not just the one that has the diagnosis. Please take care of yourself.
My husband has become even more selfish and self centered since his diagnosis 2 years ago. We fight a lot also. It is always my fault when somrthing isn’t right. I try to tell him how he treats me then he says oh so now it is all his fault. He also doesn’t want to give me details and expects me to read his mind. I have thought about it and realize that he really has always been selfish but has become more so now. I am not allowed to make decisions on my own and when I do according to him I make the wrong ones. I pray a lot and I cry a lot and try to remember why I married him and that I still love him. I have also made plans to get away on my own and will be going to Hawaii in 2 weeks. I have a grown daughter who is able to be available to keep an eye on him while I am gone. Make sure you get time away alone and get couseling if you are depressed.
Hang in there = it comes with the disease.
Dear Ann, I’ve been knocking myself out with this same question concerning my husband. You can find studies that say MS can affect people this way, others down play it. I think, perhaps, a scan will show where the lesions are and perhaps they could say that this would affect his behavior, but either way, does it really matter? It doesn’t change the situation. I don’t have any answers for you other than I know from experience what you’re talking about. I’m going to say the “C” word… counselling. If he won’t, you might need it just to help you deal with the situation. There’s no magic pill to make your life easier. :(
You are not alone,
Linda
I certainly know the feeling. I have been with my wife for 9 years and she has been diagnosed for more than half of it. There are a lot of times I feel completely helpless. Sometimes I feel like she has just given up. I get grief from family because they see it too. Nothing I say seems to matter. I love her unconditionally and will always be there for her but I never know what that next day is going to be like.
I Am so happy I found this site. At least I know there are others in the same boat. I pray every day for all of us.
Ann
I know how you feel my husband were told on our 15th wedding annivsary we cried a lot and then we looked at each other said almost at the same time Are going to let the MS rule us or are going to rule it,we have been married43yrs it is very diffcult even more so now as the MS is getting worse, he finally decided to go to counseling which helps some and I also go and have been going for sometime it helps when you can talk to someone else,and sometimes they can give you a different idea on how to handel it his moods and yelling at you I still get that where I am wrong and he is right,when I know he is like that I either go on the computer go for a walk or just read, hope this helps some.
Dear Ann,
I was recently diagnosed with MS and my memory issues were the main reason why I went to a neurologist to be tested before I was diagnosed. Perhaps your husband should take a neuropsychology exam. It’s basically a 4-6 hour test that measures all sorts of cognitive functions. I just took one a few weeks ago and it is really amazing to see which areas of your brain are being affected my MS, intellectually and emotionally. I found out that I tend to lose details if given too much information too quickly. It may help your husband to see how his brain is being affected. I was worse than I thought in some areas and not as bad as I thought in others. If you choose to go to a counselor, I was advised to look for one who deals with neurological issues, not only, “talk therapy”. It seems for us MSers, too much talking may make us feel worse. I’m sorry you are going through this.
Thank you for all the recent posts — this ongoing conversation helps me a lot. I think you are right, Pam, when you say that individuals with mental challenges often don’t want to admit it.
I was invited to go to a caregivers’ support group (caregivers broadly defined) and at first I felt that my situation was different from those of other people because they were caring for their elderly parents or grandparents with dementia. But, I really saw some themes across all our situations — people with cognitive challenges tend to feel scared, powerless, and embarrassed. They don’t want to have the cognitive challenges, and it’s probably the case that their mental challenges keep them from understanding sufficiently what is occurring. I am going to keep going to the support group, even if no one else has a loved one with MS, because some of the issues are similar (e.g., making decisions about medical insurance, living arrangements, loss of freedom for the caregiver).
My sister is going to have a neuropsych assessment at the beginning of June. I am interested in the results but wonder how she will feel about the results. They may increase her depression, or they may help her to understand that she really is having problems with memory and problem-solving.
Same at my house. Really gets tough some days.
Hello,
I have been wondering for a while when I will find a pretty new post for something that I deal with daily. I am a care giver to my wife of 11 years who has suffered with m.s for the whole term of our marriage. I am 33 and she is 37, she has secondary progressive m.s but still holds down a full time job. We have 2 children and I am a stay at home dad (she has always earned more money than me!)
We have been slowly moving apart for the last 3 years as her condition has worsened to the point we are at now. I do love my wife but I am not sure I am in love with her anymore, due to changes in her condition she loses concentration very quickly, does not listen to me when I talk about all the rubbish stuff couples talk about and has serious fatigue meaning she is in bed most evenings by 7pm and I know she works very hard but….
I get fed up of family and friends telling me I am so lucky and what do I have to moan about but they do not realise that we no longer have an intimate relationship including sex because of the changes in her condition including incontinence and tremors. I hope I can feed from some of you guys and help in return. All the best Jason
Thanks so much Pam and Linda , sorry it took so long to reply ! I had surgery on my knee may 8 th ! So I have been off work , I have learned a lot these pass few weeks with spending a lot of time together. I am truly blessed to have found this web site …. I have learned just to walk away when he starts yelling about nothing as long as he’s safe! I try to get him to ask when he needs help but I have figured out its makes him feel better if I don’t ask and just do it for him . And yes to your other questions , my husband has pushed most of his family away ! But I have the support of my family thank god …. I will check back more often thanks .
we may be in a similar situation although my husband is the one who has MS. we are young and have kids and he is either primary or secondary progressive. the loss of dreams is something i grieve everyday and it affects my relationship with him. MANY MANY emotions come up. I am in this for the long haul (and i say this even though i feel like i am in a worse state of mind than i have ever been in) and feel there is a lot of work that we both need to do. All this while his condition worsens. And no one around us understands. Even family and friends, although helpful, still don’t quite get it. Happy to connect by e-mail if you’d like.
Hey, Jason:
I wear your shoes. 21 years now. My wife lives full time in an assisted living facility and our kids just left for college. Prog, 2. I avoid moaning to friends and family because folks basically lack empathy unless they’ve walked in your shoes. For 21 years folks always ask how my wife is, but no one ever checks in on me unless I pay them (shrink).
I live in our house with my 18 year old daughter soon headed to college. My wife lives 20 minutes away.
A few years ago I met a female friend who has empathy for my situation and spends time with me here and there. She’s a lifesaver because loneliness is my Achilles heal.
I am surprised your wife has Prog 2 and can still work. Pretty unusual, I would imagine.
It’s perhaps the toughest job in the world…Caregiving.
You’re not alone. Be strong.
Mike
Man 52. Wife 46. Married for 28 years. Known each other for 29. She’s had ms for 30 + years. I could vent or tell my story for a long time but no one else could get a post in. I don’t want to say how I feel. I thought unconditional at 23 when marrying too. I’m 52, does anyone want to hear what I’ve been thru?
I’m broke now. It’s a looooong story, hmm.
:-)
Ann,
I’m so sorry you have to go through this. My husband was diagnosed 4 years ago and our arguing has increased exponentially since he’s be diagnosed. When I was reading your message, it felt like I was reading about my own life. Are you in therapy for yourself? I have a therapist, he has a therapist and we’re also in couples therapy….I find that therapy really helps because my therapist can help me identify the truth from reality. Sometimes, I internalize the criticisms that my husband makes about me and I get really angry that he doesn’t see how hurtful, mean and short he’s being. Having a therapist gives me a place to voice my concerns in a safe space and gives me tips so that I know how to effectively address the arguments as they arise. It’s certainly not easy but it has helped me with my sanity…a little bit.
I’m also trying really hard to lean on my faith, but I’ll be honest and say that I’m not upset with God for dealing the cards to me. I know my husband is the one with MS, but the way that he treats me makes it soooo hard. What’s worse is that he thinks that I’m the one with the problem and he’s justified! Sorry back to you Ann! :) I think this message board is a great place to start. Also, I find that helping other people is very theraputic for all parties involved…so if you see someone else on this message board who is in need of encouragement, drop them a line and provide some insight….helping other people has a way of making you feel a little better because the focus is not on you.
I hope this helps. I’m praying for you sister.
-Best,
Sheila
I have the same problem. My husband is only a year into his diagnosis and it has been a struggle to say the least. The side affects of the medication keeps him up all night or all hours of the night and keeps his mind racing. This is hard for me as I work full time and I get little to no sleep. We have 3 children and one is only 2. He is very argumentative and wants to discuss everything at inopportune times. This is not the easy going man I married. I feel like I’m living with a meth addict!
Sarala I agree. No one gets it. Shocked at how no one thinks to call and see how my wife is doing. Friends? Really? You are not a friend if you are so busy promoting how wonderful your life is on FB and not taking the time for a call. One of the biggest fears of my wife is that everyone will just forget her because its too much trouble to keep a relationship going. Do I sound angry? I am.
One more thing Sarala. Your comment on the loss of dreams being so hard. Once again I agree. My wife’s dreams are gone. My dreams and life goals are mostly lost as I work 4 jobs to keep things going. Dreams for a wonderful retirement together. Gone. Now my daughter has been diagnosed with MS. Dreams for grandchildren? MS very likely ruined that too.
Hi Sarala,
I have had to make my own dreams come true with my children and in a very selfish way have had to say I will be spending time away from you to allow me to lead some sort of normal life. I have started going away for weekends with the kids to allow some normal activities to take place. with carers in place. I cannot allow my childrens lives to be put on hold whilst we deal with the situation we are in. Ultimately all of our marriages are on the edge of survival unless we are a little selfish. I personally would love to meet someone who I can share experiences and dreams with whilst still being there for my wife, to love, care for and support her with the knowledge that I have an avenue to escape to when I need to. Does anyone think this is wrong?
Man 57, Wife 53, Married 32yrs. diagnosed with MS 22yrs ago but has had it all of our married life. I quit long time ago so many times, so I stopped quitting. Yes this is unconditional LOVE. It’s not fair, but FAIR is a place (a place for entertainment) not a state of mind. All of us here are special people. Very few people can do and survive what we do. Do whatever it takes to hang in there. Your survival mode needs to kick in (to keep you strong) then you can care for your love one like no one else.
If you need company(a real person) to have mental sanity then get it. Becareful though there are kooks out there. But find someone. You can trust and get some peace. The love ones we care for need us.
So in the famous words of…(I don’t know who) HANG IN THERE!!
Sara and Jim,
I too feel that my dreams have been smashed but I am now trying to make new and different dreams for myself and Husband who has PPMS. I plan on taking a couple of trips by myself and a couple with my husband. He watches TV a lot so each day I try to sit and watch his favorite shows or sports with him. This seems to help with some of the arguments we were having. I think he was feeling lonely and I didn’t know how to fill the void but just giving him my time seems to help.
I am a in my mid 50s and my husband, who has PPMS is nearing 60. He was diagnosed 15 years ago, and is now quite physically limited and beginning to show more serious signs of cognitive issues. My kids, who are young adults and have always been very supportive, are starting to move on with their lives (a good thing), but it is leaving me feeling more alone and isolated. I have very few social contacts, due to the time that I spend between work and caregiving, and my kids, who use to be my main travel companions for much needed vacation respites are now a venturing out with friends (again, a good thing) and mom is no longer their choice of travel companion (understandably so). The few social contacts I have travel with their spouses and so they are not options for any serious get-away plans. I am an active person with an adventurous travel nature and not being able to get away to reenergize is becoming a real problem in terms of being able to keep up my spirits and energy so I can continue being a caregiver. While this blog is very helpful in letting me know I’m not alone out there, I am looking for suggestions on how to find in-person contacts and travel companions who can understand my circumstances and also need a respite companion. Are there any resources or connections that anyone can suggest?
jason, its not selfish of you! I do the same thing but my kids are in there 20’s .So I seam to spend time with my girl friends, with out them i would go crazy! my husband has pushed most of his friends away. If people do not understand M.S. they will never understand why he is always so mean, but the person before M.S. he was the most caring man around . Its just so sad ! I will stay with him as hard as it is, i just learn to walk away and not take his out burst personal . kinds like being room mates . :(
Hey, Carol,
I belong to a organization called “Share the Care” in Central Florida. This organization is. specific for the caregiver. I met a man in this group and he was adamant about me getting time for me. I’ve been married 32yrs and love my wife like nothing else (except God). He died suddenly last July i was reminiscing just the othe night. If you lave and care for your spouse, take care of y i yourself. I know its hard but you must.
Also know that I struggle with this too.
Lou
I live in Overland Park, KS so my be you can find some people in your area who would like to travel. I would certainly be interested in meeting someone interested in traveling or just getting together for Breakfast or lunch.
Carol……….I understand. I’m also an adventurous type that is now limited with a spouse who simply cannot travel much. Setting up a group of MS caregivers who are looking for travel partners is not a bad idea. I’m actually leaving for a solo trip to Egypt on Friday. So sad not to be including my wife but she just can’t so it. I’ve negotiated two solo trips per year with her in order to keep my sanity. I do so many things by myself……..the person I married died several years ago.
Ron, We’re here. What have you been through?
//Linda
Hey Everyone…Would you begin adding your city of residence beside your name in the required fields?
Jason,
I understand the need you are talking about. I have often thought the same way about the need for companionship with a “healthy” person. However, I have come to the realization that this is dangerous. Even with the best of intentions to fill a void, you will not be able to control what the flesh naturally wants. Nor can you expect limitations to work for the “other” person. Being lonely in the way we are is so tough, but the complications you would encounter in doing otherwise would not be worth it.
Jim …. Thanks for your response. I have considered traveling alone as an option, but it is a little more difficult for a woman to do this, and somehow, traveling alone seems to defeat one of the main reasons for getting away for me, which in part is to get away from some of the isolation and loneliness I feel at home. Back in our past lives, my husband and I went to Egypt and it was a wonderful trip, I know you’ll love it, although you probably need to be a little more careful now than you did back then. I wish there were places to post pictures on this site, I would get such a kick out a seeing again some of the places you will be visiting. Have a wonderful trip!! And be especially adventurous for those of us who just can’t right now. As for the future of travel, maybe there are others too who would like to travel and need companions to travel with. If there is such a group, please share the information on this site, and if not, maybe it’s something that needs to be established. I’m it the DC area and would like to hear from anyone else who might have suggestions.
Hi Lou, thanks for your words of encouragement. I also have been married for 32 years and we are still best friends, but the change that has taken place over recent years has worn me down, heart and soul. I miss the man I married and there are times when the self absorption that has consumed him is almost more than I can bear. I try to take care of myself, but as you are so well aware of, we all struggle with this, some days are better than others, but all are difficult. Thanks again for your encouraging words.
Jim, I also take trips a couple of times a year without my husband because he also doesn’t want to travel much. He refuses to fly and since I am the only one driving I won’t drive more than 4-5 hours per day. All care givers need to take time for theirselves doing what they enjoy. At 62 we had planned on retiring and traveling but now that the time has come I told my husband that even though he does want to travel he can not tell me I can’t travel because it was my dream and I wouldn’t have anything to look forward to.
My husband has PPMS and is homebound. I am his full time caregiver. He will not allow anyone to come in so I can get away for a few days. I have been doing this since 2007. I read all the comments and know so well what it is like to have people not understand or care to understand MS. I keep active, have lots of friends and get out as much as I can. I have a male friend who I care deeply for but feel guilty admitting it to myself. I never thought I would ever consider a new love but now it is facing me and I am not sure how I will handle.
Wow! Didn’t realize how much I needed a support group. This totally describes my life and it seems to be getting worse.
Jeanne
my husband does not have friends because he has never been that social. our family is our social net (daughter, son, myself, and his mom primarily). my daughter and I are getting our master of nursing degree so that is my time to get away. also, I play tennis regularly and this can be helpful, although my husband seems to HAVE to go EVERYWHERE I go! And, yes, he can be caring, but always is complaining the majority of the time we are together. I have to listen but it gets so old.
I came across this website 3 years ago, and found the information so helpful. Well I am back now, in the same sad shape as before – or worse. My husband and I have been married for over 30 years. He has had MS for 23 years. Secondary Progressive now. He is no longer walking, but has a chair with power wheels, a car with hand controls and electric ramp, and a wife who makes a decent salary and pays all of the bills. He is seen by others (his casual friends) as a great guy – so motivating and friendly and outgoing. But in private he is angry, depressed, resentful and has many of the characteristics I see in published literature about abusive personalities. He has angry outbursts, he is demanding, and yells at me every single day. I believe his meds need adjusting, but cannot do anything about it because he will not allow me to go to the Dr with him. During a recent hospital stay, then subsequent rehab stay (5 weeks total) he must have thrown me out of his room (Get the F*** out of my room!) at least 5 times. He pushes me, rams me with his wheelchair, calls me names. No apology. I am no longer sleeping in our room and have moved into the office of our tiny condo. I am away often for my job, and perhaps that is the only reason we are still together. Even our adult children see how badly he treats me. I am at the end of my rope, and sick with anguish. I loved the man I married, but he has changed so much.
Ann – I just found this website and when I did, I cried. I am so not alone! Everything that you wrote in your May 2014 post is my life to a tee! I cannot say or do anything correctly. He argues with everything I say and I cannot do a anything right, but he makes no sense to me at all. Yet to him, I am the crazy one! He stops talking to me for days on end because “I just don’t get it.” How exactly am I supposed to get it when I do not have the disease? I try to be sympathetic – I swear I do. My husband, too, can be so hurtful one day, but can be so kind and can’t live without me the next day. I am supposed to just forget everything he just said to me in his hurtful tone and move on. If I said I said just one-tenth of what is on my mind, he would be devasted. I know in my head and my heart that it’s this horrible disease, but I just want my husband back and a normal life. I know that it’s impossible now. One day at a time, I suppose. Thank you all for making me realize that I’m not the crazy one! Jill
Hello All,
This site is awesome, but I wish it had a chat room or some way for us to contact each other. The biggest problem I face with MS is the isolation. Everywhere I go I feel like I have to take my wife in the wheel chair. That wouldnt be that bad if she could communicate with myself and others, but the cognitive part of MS has left her in very bad shape mentally too. It mimics Alzhiemers. My wife has had this disease since 1983 and its been secondary progressive for the past 15 yrs or so.
I know this is tearing me apart but I’m stuck. I got close to putting her in a nursing home a couple of months ago, but I couldn’t pull the trigger.
This lady saved my life and now I feel its my duty to keep helping her. When we met, I was 23, and my first wife had just been killed on a motorcycle with a good friend of mine, also killed and driving. That coupled with the fact that I’m a vietnam vet from a broken home I was hitting rock bottom and didn’t want to live anymore. Patti was the only person that got through to me and saved me from ending it all. I always told her I was amazed that she was beautiful from her skin right down to the bottom of her sole. She still has that positive attitude even though shes not the same person. She tries to help me every day, but doesn’t realize that its making it much harder for me because she gets up from the couch with her walker and will fall. I let her do the laundry even though I find it all over the house. I know I have to make her feel like shes contributing, so I give her a few dollars for her pocketbook knowing that it will most likely turn up missing in a few days. She rarely gets frustrated but she does call out my name all the time. Sometimes I feel like Johnson on the 3 stooges. Johnson! Johnson! Johnson! You gotta keep your sense of humor
I’ve tried having people come in to take care of her, but they dont know what to do with her. they try and play games but she cant. Shes just happy watching tv all day. Thats not the woman I married yet I still love her like I did. I’ve thought of dating, but I cant do that either because I feel as though the trust we have for each other will be broken by me. I dont know what to do other than write and hope I find a way out of this mess. I’m not particularly religious so please don’t ask me to have faith. I respect everyone’s right to believe what they want so please respect mine.
I know all of you guys are going thru similar things but in different ways. I hope we all can figure out a way to solve this hidden killer. For the caregivers that go thru this every day you have my ultimate admiration and the love that you may have lost from your spouses. I just keep hoping that someday people will realize what this insane disease does to wonderful families like all of ours.
Brother I feel your pain I don’t believe my wife is in the same state as yours but she slowly changes more an more it kills me inside I frequently go for drives alone so she won’t see me cry as I write this I’m shedding a tear. She’s the most beautiful caring sweetest girl I’ve met she always puts everyone else in front of herself in that sense she’s never changed. I’m 39 goodlooking an kind man I know if I went looking I could find a women with ease the problem is that I want no other I want her my dreams of a perfect life kids white picket fence was with her no one else. No matter how many days go by I look at her an that sweet sexy girl I feel in love with is there she owns my heart so if I die alone at least Ill know I never gave up on her as I know she would’ve never had turned away from me. Brother I feel your pain it’s soo hard it’s why I’m trying to find people going through the same things we are at least we can relate share a story laugh an make new friends just remember were never alone.
Ok so, i take care of a friend with MS. We are discussing ways to independently get out of bed onto her electric wheelchair. Are there any suggestions? I really need some help…
Jackie,
Have you tried a Hoyer Lift? I don’t know if they are for independent use now. But you have a place to start any way. Good luck and what a friend you are to be doing this for a friend not a husband or wife, mother or father, sister or brother.
Prayerfully
Debbie
Rich,
Sharing in your sense of isolation. Days are spent working, and evenings and weekends care giving. As my husband’s social skills, physical abilities and cognition decline, and his care needs increase, we spend more and more time confined to the house and we lose greater contact with the outside world. He is wheelchair bound and needs assistance with all his personal care and transferring. It is physically and emotionally exhausting going out with him with all that this entails. We have limited help during the days while I’m at work and besides this long term care giver, I am virtually the only other one he’ll let help him with personal care. While we had a very intimate relationship when his health allowed, it no longer does and I have found that as I help him more with caring for his personal needs and hygiene, I no longer feel the physical attraction I once did because my role has just progressed into such a different place. I still feel very committed to him and care for him greatly, but I get lonely and feel the isolation that seems to be a recurring theme among many of the other spouses on this site. While sharing helps, I wish there was more I could do to combat the loneliness.
If anyone has success with figuring this out, please share your ideas. Thanks.
Jackie: When I worked in a group home that had several individuals with varying degrees of physical disabilities – one used a wheelchair and with assistance – she was able to transfer from her bed to the chair and again from the chair to the bed. To accomplish this — there was a strong rope secured at the bottom of the bed that was long enough for her to reach the rope and “pull’ herself up into a sitting position. Then we placed a smooth varnished “transfer” board from the mattress and the seat of her chair and she then pulled herself across the board. Again – someone was with her to ensure her safety and assisted only when necessary. Don’t know if this is something that will help your friend or not — it is just an idea and it worked by allowing more independence than had it not been used. Thank you for being there for your friend – I know she appreciates it.
You might already have this but Ill mention it anyway. They’re called bed support posts and medicare will usually pay for them if you get an Occupational therapy person to help you. Otherwise out of pocket theyre $60 or $70 dollars.
Some have a wooden bottom and steel bar combination. The part of this that gives it support fits between the mattress and the box spring. The steel hand bars are attached and come up about a foot or so.
My wife gets out of bed all the time using this. She grabs it to lift herself up, and once shes in a sitting position she uses it to keep her balance until shes in her chair. They’re simple but very useful.
Youre a great friend for helping. :-)
Thanks Sandro for sharing your thoughts.
I know its not good for us to feel the way we do about our wives but what the hay, we do right?
Logic says; think like a doctor and keep your emotions out of your decisions. Looks good on paper but between the ears and the heart its just words. Sounds like yure in the exact same dilemma I’m in, except youre a much younger man. I’m 62, but people say I dont look 50, LIARS; LOL.
One thing thats helping me is I got a little dog. Hes helping alot. When I come back to the same walls instead of seeing sadness I see Nacho. Hes a pug/ maltese mix. Hes much better looking than me and his attitude is much better too. Come to think of it its a good thing I didnt get him earlier otherwise Patti would have run off with him.
To him my wife is just the way she is. He seems to know if she struggles all he has to do is be there for her. He doesnt cry or have all the anxious emotions that could weaken her resolve. No, he just sits there with the big brown eyes and looks at her and waits. If she gets up in 5 minutes or an hour, it doesn’t matter, he lets her know its ok, hes still there. I’ve learned a lot from the little guy.
Its not say I’m not lonely of course I still am but the little guy has help me keep my sanity
Hi Carol,
Thanks for commenting. Oddly enough and lord knows I’m far from normal LOL, but I still have a physical attraction to my wife. , She hasnt been interested in sex for years. In fact I feel like I’m prepping for the priesthood. It is defintely torture.
The only physical connections we have are when were sleeping and I’ll still hold her like weve done for years. Shes never the one to initiate even a kiss anymore. I shouldnt say never theres been a couple of pecks over the years. Its all definitely the MS, because she still is mentally attracted to me. I wouldnt wish this disease on my worst enemy.
Look into meetup.com. They have groups of people meeting for all kinds of things in local areas. I joined several with my dog Nacho, and it has helped me keep my sanity. Lets say in my opinion, others may disagree with me on the sanity issue. Stay in touch. :-)
My son is 19 and diagnosed 2 years ago. he cant do any of the things he wants to do, he doesn’t have his license yet due to his symptoms, he only got to go to one year of high school so he has no friends. He is going thru depression something awful. It tears me up to see my child go thru this. What can I do to help him?
Jackie, if you can get a order for occupational therapy and have your friend evaluated for transfer procedures they could come out to her home after an evaluation to assess her needs and help show you and her how to transfer properly. They can also evaluate if she needs a lift, gait belt, transfer board, side rail or any other equipment that might be needed. Medicare will pay for an evaluation but you need a Doctors order. Hope you can get this approved and help your friend gain more independence.
I am a 54 year old woman who relocated from Florida (resigning from my job) to Ocean City, NJ to help my elderly mother take care of sister who has MS . My sister is in a wheelchair. I do everything for her. Lately it is getting more and more difficult to help her on and off the commode, wheelchair, bed, etc. Her husband dropped her off at my mother’s house over two years ago and I just want to be able to take better care of her. She gives me money weekly for this. Any suggestions on being able to lift my sister better? I have scoliosis so any help would be appreciated without bringing in any outside help. Thank you.
Hi, I’m just wondering if anyone has advice or just feels this way. My husband is going on year 4 with progressive MS.He also had a stroke 6 months ago and is only 38. Does anyone else as a caregiver feel lost and stuck. I don’t have the ambition that I used to I just feel numb. With the MS came the cognitive challenges and moodiness and then the stroke which brought more cognitive issues along. Does anyone feel like their partner with MS could be doing more. I feel like a jerk but I don’t understand why he doesn’t fight harder. Also and once again I feel like a jerk saying this but sometimes I feel like he can do things when he wants and then uses the illnesses as an excuse to get out of things. I don;t get it and just wondered if anyone else went through these feelings.
Amy
you are not alone in this feeling this way my husband has had MS Progressive since our 15th wedding Anni.and we have been married 44yrs.now just celebrated, his moodiness is horrible and I don’t drive so there are many times I feel just plain stuck, and yes i feel that there are days he could do more but when he does I have noticed he hurts more and things are worse between us, because I have pushed him to do something The first and most important you both have to learn to rule it the MS and not let it rule it.I have also learned that if I ask him how are you doing today and he tells me o.k. or just slient you have to sometimes listen to how he says it the tone of voice, I take walks do things with my friends You have to do things that you want to but just make sure he is taken care of my husband is in a wheelchair.and isn;t taking anything for his MS they tried giving him something and it did the opposite instead of helping it put him in the wheelchair.
Hi all,
I am the caregiver for my wife. She has had MS for about 20 years, and now is in the last stages of the disease. My experience started with giving her daily injections of Betaserone, then weekly Avonex, then monthly trips to a clinic 2 hours away for Tysabri. She went from using 1 cane, to 2 canes to a walker and then to a wheelchair. She also had a couple of strokes. Her condition has been rapidly deteriorating since last Christmas, and I retired to be with her.
She lost the use of her legs last winter and the use of her arms this past summer. Now her upper body is like a wet noodle, and her legs are spasmed and can barely be straightened out. Her cognitive abilities are pretty much not there and she sleeps about 20 hours a day.
We have homecare girls come in every day for an hour, so I can run out and get groceries and stuff. I also found a travelling dental hygienist to clean her teeth, and our dentist and doctor have made home visits. So she is getting the best care I can provide. I will take care of her the best I can until it is too much. But when is it too much? That I don’t know.
Hi Amy, My husband is 48 and has had MS for about 15 years. I have been with him for the last 6 years and I am 37 with 2 kids. Some days are just harder than others for him. some days he is out in the yard doing his thing and others he doesn’t even get out of bed. I get frustrated, I mean just a year a go he was very energetic and happy we had fun. things are getting harder for him. he just stopped working this year and is dealing with feelings of worthlessness. Think of if this way, the life he once knew is being taking away from him. try to be compassionate and when you feel your self feeling resentful. take some time out. get with a girlfriend and vent it out. it’s ok to feel what ever you feel because the life you knew with him has been taken away from you too. Hi body has to deal with this disease but you heart and mind do too.
Hi Darryl,
We’re pretty much in the same boat. I think the toughest thing for me to deal with is the loneliness. You’re smart to have someone come in now and then to help out, and it sounds like you’re doing a great job yourself. I wish I had some incredible words of wisdom for you but I don’t, because like you I struggle with when is enough enough?
People on the outside just tell me to put her in a nursing home. To them its ez, because the emotional tie of losing your best friend and handing over the reigns of care to someone else isn’t anywhere they’ve been or want to go.
I always tell myself when I do make that decision, I hope there’s enough of me left to go on without her. You sound like a smart guy so I’m sure you’re keeping yourself in shape physically, I know that helps. I also try to do something out of my comfort zone at least once a week to keep life somewhat exciting. Other than that I’m retired to care for Patti just like you. So it can get monotonous .
I want to wish you the best my friend and please stay in touch. We all need each other, there’s very few people that walk in our shoes, or for that matter want to (LOL). With the holidays coming I hope all of us stay in touch. If anyone deserves good holidays its care givers and their loved ones.
Thank You for your comments Rich.
I am so sad to say, but Amanda passed away on Tuesday. It was very sudden. Her PSW was here from 10 to 11:30, and then the VON nurse was here for her bi-weekly visit. Everything was good other than a bit of upper chest congestion. I lied down beside her for a little bit before I made her lunch. The phone rang, so I got up to answer it, and I put some laundry in the drier. When I went back into the bedroom, she was gone. I was away from her side for less than 5 minutes. She passed without making a sound and had the most peaceful expression on her face.
Thank you all, and stay strong,
Darryl
Hi Daryl
I’m so sorry to hear about Amanda. But I also feel a sense of relief for you both and a happiness that she passed in her sleep. Amanda was lucky to have you through her last days, I think its so awesome that you were together. You take care and take some time to get to know yourself again, that’s Amandas last gift to you.
Happy Holidays
Rich
Hi, i met my husband with MS and he had it since 2006 we met in 2008 got married in 2011 he told me that it would be hard and he has gotten worst.he been in wheelchair since 2006, i am his care giver but i thought it would take a toll on me.sometimes i feel so stress and depress i just want to leave at night i can`t sleep he calls me at least 50 times a day there`s times where i can`t go places because of his condition i have sacrifice a lot to take good care of him but he want help me to help him take care of himself. he don`t drink water he want eat healthy all he want is fry food and eat lots of junk food and im really concern about his health. i love my husband dearly but he has an harden heart towards himself and me any advice im really at my breaking point
Hello:
I have been married to my wife for almost 5 years. While she has always had MS, it was only about a year ago that I really have started to understand the “gravity” of the situation. I am most worried about finances, as I am not a wealthy man. While I care for her deeply, I don’t think I can handle the financial and emotional strain of being a caregiver. I know it sounds awful, but I can’t live in continual fear and anger for the rest of my life.
DH
Hi DH,
I know the feeling. It took me a while to realize it to. It can be overwhelming at times. Do you have your wife on social security and Medicare? That can help with the finances.
The other thing you may want to try is to find a group of caregivers in your area to sit down with and let them know what’s going on. They can help you just by listening to their stories and telling yours.
You may also want to see if her neurologist has a social worker that they work with. If the SW is any good they can tell you ways that may help. Don’t try and fight this on your own!
You take care of yourself because your no good to her unless you do. I’ll be thinking of you two when I sit down and watch a football game over thanksgiving. I hope you both feel better and relax together over the holiday
Best regards,
Rich
Hi everyone!
I’ve been reading all your comments and I feel relieved that what i’m feeling it’s not an exclusive thing. First of all, english it’s not my first language (i’m from Spain) and i would like to apologize for any grammatical or lexical mistake.
Here goes my experience: i’m 32yo and my mom is 53yo. She was diagnosed with MS back in 2004, so it’s been 11 years of fighting this stupid disease. At home we are 3, mom, dad and me. When she was first diagnosed i was away in college, and everything sounded like, really far from me, i was not at home (i was only there on weekends, and some i didn’t come home)and could not see my mom struggling whit her life. My dad’s a forest firefighter (i don’t know the right word, sorry) so he has a weird schedule. The first 2/3 years were difficult, because we didn’t understand what was happening to her. Nobody explained to us what to expect, what to do to help her or where to go to find any answer. She had relapses every year, but her doctor wouldn’t change her meds. Finally, in 2008 we decided to change doctors, and he was really surprised with how my mom was: she could not walk alone, her cognitive senses were destroyed, she was on diapers…and in only 4 years!!
He changed her medication and everything seemed to quieten for a while. In 2009 i came home after finishing my studies and decided to stay at home with her, because my dad could not quit working. I’ve been her primary caregiver all these years, but her situation has worsened the last couple of years: she was on Tysabry and they had to change it because it was dangerous to her, so, 3 months without meds to clean her body, and last May she started a new one (Gilenya or Fingolimod). In those 3 months she stopped walking, talking and paying attention to anything around her. The meds are the only ones they can give her, because she is too bad to try any new one. Last August she had an epileptic crisis, so, new meds for her!! And last May they had to put her a feeding tube because she didn’t want to eat, she has swallowing problems and that made her have a respiratory infection.
Now i feel like i had enough. I feel i’m the only one taking care of her. My dad goes to work and when he’s home he leaves to work in our village house, he says he needs it to not think about the problems all the time. I had my aunt help (we were paying her) but she also said it was too much, that she couldn’t do it anymore because she was not paying attention to her own life. So i’m alone. I had a breakdown last month. I had to go to a counselor and she adviced me to start thinking in me for a while. I’ve never had a job, can not go out with my friends or even thing about having a relationship, i’m seeing my life pass in front of me, and i feel soooo guilty for thinking this that sometimes i spend the day crying. Mom is now in a day care facility. She leaves at 11 in the mornings and comes back at 8.30 in the evenings. The weekends she is at home. But it’s even worse! Because i feel like i’m in jail, with a tight schedule.
But what is worse is thta she is not my mom anymore, she can’t talk, can’t walk, can’t do anything for her. She sometimes is in her world and don’t even knows that i’m there talking to her. It’s me to help her out of the bed in the mornings, to wash her, feed her, dress her, give her her meds…and at night the same. I feel enough is enough…I’ve been talking to my dad about looking for a nursing home, but he is really reluctant about it, he feels like we are abandoning her…but i can not stay like this for more time, i need to start living my own life!! i’m sooo sorry for my mom, she was a really active person, my best friend, and seen her loosing her battle day after day is making me mad.
Do you think i’m overreacting? Are nursing homes that bad???
Thanks everyone for been there, i will have you all in my prayers.G
Hi Gloria
You’re an amazing daughter and an amazing person. Youre moms decline has been fast. It sounds like your dad has to come to the realization that you have to move on and your mom needs more help than either of you can give her anymore.
I’m in the same boat and its starting to take me down with her. Like you describe I feel like I’m left alone to take care of my wife. I asked her family years ago for help but they couldnt do it. The way they deal with it is to tell me she looks great! Those words go right through me and each time I hear them a little voice in my head says ” They just let themselves off the hook” I use to try and explain to them how sick she was and the care she needs, but I eventually realized they were hearing what they wanted to hear. Its funny I wrote them all a letter about 15 years ago asking for their help; even if they’d just occasionally would call Patti and ask how shes doing. I never got a response. It did come in handy though; when my daughter was older and couldn’t understand the frustration I had with my extended family I pulled out the letter and showed her what I sent when she was little. She now knows the truth behind the phony smiles and gee your mom looks great.
My daughter Pam is close to your age she’s 27. I’ve done the opposite of what you guys have done., I’ve kept Pam going through school and eventually left my business to care of my wife Patti. I told myself that I didn’t want MS to destroy 2 lives (Patti and Pam), little did I know that it would get 2 lives either way. Instead of Pam its mine. I’ve become so isolated that I feel socially handicapped. I take care of Patti so much that I get frustrated with the rest of the world. There are so many times that I find myself saying “I hate my life” that it scares me. Like you and your dad I have to find a way to get the courage to put Patti in a place where they can give her what I no longer can. Then and only then do I stand a chance of being a dad to my daughter again. By reading your letter I realized that no matter how the caregiving is done MS is going to take its toll on a family.
My heart goes out to you and I hope you find the strength to show your dad what you wrote, because its beautiful and he has a great daughter. I hope the two of you will find the strength help yourselves and your mom by placing her in a nursing home. I want to thank you for writing this because you helped me see that I’m not as alone as I think.
Were all in this together,
Rich