If you’ve ever flown, you’ve probably heard a cabin attendant do the pre-flight commentary and say,
“in the event of rapid cabin depressurization, oxygen masks will descend from the panel above your head”.
Then you’re instructed to put on your own oxygen mask first before assisting your fellow passengers.
Hearing that simple directive always gives me a guilt twinge — I’m a caregiver at heart — even though I understand the reasoning behind it. If I pass out from lack of oxygen, I’ll not be able to care for my fellow passenger.
My wife has Multiple Sclerosis and I know first hand that caring for an MS patient can frequently cause “rapid cabin depressurization”. Grabbing my own oxygen mask first still gives me a twinge of guilt. But I believe the comparison 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 continuous series of “depressurizations” one experiences when caring for an MS patient.
MS is a difficult disease to experience. Providing care for an MS patient is stressful and it’s important that you care for yourself, too.
My goal for this blog is that it become a helpful resource for other MS Caregivers. I hope you can use what I share to improve your own life. And in making 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.o.....px?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,
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......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.
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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/.....dium=email
/LInda