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
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/Re.....-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/p.....-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.