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ask: Living with and possibly leaving a sick spouse - a heartfelt story from a reader looking for advice

By Michelle King Robson Expert HERWriter
 
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A couple of days ago, a woman wrote to me in the "ASK Michelle" section and told me her heartfelt, honest, and I think heart-wrenching story about her ill husband, who has multiple sclerosis, and the very real difficulties about living with someone who has changed in so many ways over the years. Many of the changes have affected his personality and made him very difficult to live with at times. I wrote her back and told her how I could totally see where she was coming from in terms of her emotions, and that I understood what she was saying. But I also wanted to post her story here (see below), so others could see it and reply to her and give her more suggestions, support and a sense of hope and that she is not alone. Please, if anyone has anything they'd like to tell her, I would really appreciate it--I'm sending her this link so she can watch for more replies. For example, do you know of another woman who has gone through this, and/or do you know of any resources for her? Thank you everyone!

"I am a 37year old female, well educated and completely healthy. I married my husband 8 years ago, knowing that he has multiple sclerosis. He was a vibrant, fun, clever and interesting person. Over the past 8 years, he has physically deteriorated (developed seizures, incontinence, difficulty walking distances, had a pulmonary embolism and now suffers from depression (but who wouldn't)). He no longer works, he stays home and does some household chores, is obsessed with our finances (we are doing ok), is mean and angry, hardly talks to me, hasn't held me or made love to me in years and honestly I don't even think that he likes me. I really think that I could deal with the physical limitations, it's the emotional stuff that is wearing me down. I've been seeing a counselor who asks me "How much more are you willing to take?" and I just don't know anymore. I'm so lonely and feel so trapped. He refuses to see a counselor or psychiatrist. I feel like an awful person for even thinking of leaving him, but I'm so unhappy that I don't know what else to do. I guess my question is "what kind of woman leaves a sick spouse?"

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EmpowHER Guest
Anonymous

To Anon whose husband has MS:
I was surfing the web while thinking about the same issue that has preoccupied my every waking moment for at least 10 years. Should I divorce my husband or not? Is there a way to fashion a new relationship or for me to accept all his increasing disability and nasty attitude for the sake of our family, 2 daughters?
He was diasgnosed with MS around 1988 while I was pregnant with our second daughter. He has slowly progressed is now in an electric wheelchair mentally somewhat cognitively impaired but essentially still competent and intelligent.
He was an avid sailor, racing high speed trimarans and in general a risk taker. I am the conventional working person who kept it together all these years. He was productive managing property we own but always has been 100A% for himself first at all times. He is handsome charming presenting as a warm friendly fun person to most people-not me when we are alone for long. I honestly believe there is an unacknowledged conspiracy among the healthcare providers to hide deny express the very real fact that MS often changes personality, changes in the brain or psychological need create an extreme lack of insight, ability to plan, lack of empathy -reduced "executive" function. Not dementia but mild to moderate cognitive impairment that wreaks havoc on communications, future planning, cause a lot of rage in both the patient and the family especially spouse. At the same time the MS patient receives attention, care, sympathy, empathy, lots of offers of assistance etc. I have put up with way too much abuse believing he is worth it as he still father of our daughters and we have already made it so many years.
I have made stupid decisions about this marriage. I should have divorced long ago, accepted the fallout, been honest with myself and allowed our daughters to face reality, too. I am 66, lonely, financially ok, living in my own house seeing husband frequently pretending we are still a couple. Every moment all he thinks or talks about is himself, not complaining about symptoms but talking about his inventive ways of dealing with impairment and charming others to provide him with services, household chores, and now probably driving. I have every possible symptom of depression and anxiety. I seem immobilized and and I guess frightened to start divorce process now although I will be financially compromised if this goes on. I wish he would have another serious accident and end up in some facility because otherwise he will continue to drive, spend money, sail and have accidents eventually maybe seriously injuring someone other than himself. Friends have refused to drive with him for many years.

I am still trying to manage this because our younger daughter has suffered with mental illness diagnosed last year in college. It has added an extreme weight on me as I worry what will happen if I die. She is very sensitive an worried about her dad. I believe he plans on capturing her to be his caregiver when and if she cannot work or be independent.

I think if a peron is good, kind generous and caring having MS would still be a major relationship challenge. BUT if it was difficult before all the problems will be magnified. Get out while you are still able to take a shower get out of bed and maybe read a book.

January 29, 2015 - 12:51pm
Julie Bareford Brittain

It is a miracle that I happen to find your story today! I too am "stuck" in a relationship I am not happy in. I have dated this man for almost 6 years now. He is a once successful businessman with quite a selfish attitude. He lost everything when the economy hit bottom. (this is when I met him) He was at that time recovering from a horrible motorcycle accident that nearly took his life. For the last 4 years, he has been very ill and finally went to the doctor and received a COPD diagnosis...stage 4. He has done remarkably well, considering how many times he has been hospilized and near death. In and out of the hospital, meds, O2 etc...

I was ready to leave this time last year when he suffered a terrible accident in a fire. He had 3-4 degree burns on 25% of his body. We spent months in the burn unit, me taking care of him at home....him invading our lives.....
We have no sex life except for 2-3 times a year for a few seconds. I can't hardly bring myself to kiss him at this point and I just want out. I have gained 30 lbs in the last year, 50 since we met. My life is completely different than it use to be and I want it back!

What kind of person would I be to walk away and let this man die alone? Broken hearted? He has grandchildren I love. How do you explain? (I am 47, he is 54) I was planning my breakup to happen today when I found your response by shear accident! Your story is the only one that has ever some close to my situation! How do you deal with the guilt of just walking away????

January 17, 2015 - 3:32pm
EmpowHER Guest
Anonymous (reply to Julie Bareford Brittain)

Where are his kids? His x or siblings? They need to be involved in his care. Maybe it's time he lives in a situation where he can get full time care and attention ...and you can still visit. If his family takes him, you won't know if that will all happen with grace, but you should not have shoulder this alone. I see so many of us women on here are not sure how to ask for help, set boundaries and communicate with empathy but assertiveness. It's not easy but we have to learn...because it's easier then killing ourselves slowly by being a caregiver martyr.

January 18, 2015 - 4:08pm
EmpowHER Guest
Anonymous

My heart goes out to all of you. But I have a huge problem and would like some advice. My boyfriend of 8 years just told me that he loves me so much that he can't watch me be sick he can't watch me cry myself to sleep or the doctor poke and hurt me me more. That he has held it in for the last 3 years and it has made him sick. I dont know what i want in my life from a career to dog to kids to not putting everyones elses weight and on my sholder. what can be done, cause in my mind you went from my girl my (anonymous )to a fragile china doll. That i can't even touch . I'm sorry I know you deserve better and someone who doesn't look at u with fearful tears. I don't know what to say or think or anything at the moment. But I am 27 and he is 31 we were suppose to get married this year. I don't know what happened.

January 16, 2015 - 5:38pm
EmpowHER Guest
Anonymous

Its seems that this is a safe place for honestly sharing how we feel living with a sick spouse. And what I am about to say I would never dare say outloud. But the fact I get to say it on here I am hoping is enough. Because I am at the end of my rope with this situation. Maybe getting this out will help me, or help one of you, or just give me enough releif to get through even just one day feeling a little less like this is all bottled up inside and i am gonna explode at any minute. I'm 41. I have 4 kids, all teens and above. My husband and I were married 2 years when our problems started. We had 3 kids at the time. We separated for a few months. Decided to try and make things work and along came child number 4. A year later and not much had changed, I was still thinking of divorce, when he had an accident. Its been 14 more years now. I have been the Mom and Dad and provider for 14 really really long years of my 18 year marriage. I don't make enough money to support us and am in debt above my head. The daily financial stress alone has driven me half insane. But its the loneliness that really got me. Understanding my husband is unable to be intimate I begged for years for at least conversation. Just acknowledge that I exist! That your kids exist! I had the kids and my job to keep me busy but what I longed for was some one who wanted to actually talk to me instead of telling me what they needed from me. My husband goes in his room and honestly just can't be bothered with us 90% of the time. I make dinner he comes out to get a plate, goes back and eats, comes back out to put his plate in the sink, then back in his room he goes. Although mentally and physically disabled he is capable of interacting with us, he chooses not to. Its very sad for the kids who used to beg for him to spend time with them, watch one of their sports, or just do a dad thing with them. Their want has turned now turned to bitterness towards their Dad. They are to old to believe me when I saw he is sick like when they were little. They understand now that a lot of this is his choice. And I completely understand how they feel. My loneliness has now turned to anger. I'm angry I do all this and he can't be bothered to talk to me. I am Mom and Dad, and the husband and the wife, in my marriage. That's it its just me, doing double duty. I'm angry his family won't help. Yet they judge everything I do as not good enough. I'm angry I have been there for 22 surgeries (alone, no help from his family) and made sure he was taken care of and had the support he needed and he let's them talk bad about the one thing I didn't do. Last year I was diagnosed with cancer. And he didn't care. His only concerns were how would I work? How would I take care of the kids? Take care of the house, the bills, and him? Emotionally I got nothing from him. I have had 3 surgeries in 8 months, recovered with no help from him or his family, my poor kids were burdened with not only him but then me. Now I'm back at work, barely making it through each day because I am so mentally and physically exhausted and I now feel like I can't get a handle on my anger. I still take great care of him, still take great care of the kids, and still take care of every aspect of our lives, but now I just feel angry every single day. I just want to scream that I'm tired. But I don't. I do what is needed and expected of me. I just don't know how much more I can do this.

January 8, 2015 - 7:06pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Hello
I feel sad reading your story, because in many ways it is like my own. I too had 4 kids, raising them without mine or my husbands' family near us as we constantly moved around. I also had a diagnosis of Stage 3 cervical cancer, which was treated by radical hysterectomy at age 44. At the same time I was dealing with my husbands diagnosis of Cardiomyopathy and atrial fibrillation. This made him unable to work for two years in the job he was doing, so I was the main breadwinner. I saw the toll it took on him, losing the job he loved and making him depressed and put on 40 kilograms and suffering erectile dysfunction. All this along with two of our kids giving us a hard time. Although they all did well at School, two of them got involved in relationships and ended up having a baby for which we weren't ready for and neither were they. So they both needed my support as well. I felt pulled in every way, and felt like running away and leaving them all to it. I tried Counsellers, going back to my Church for support, but this seemed to isolate me more. Everyone else seemed to have normal lives, while I was drowning. I felt lost, scared and didn't know what to do. For a while I turned to heavy drinking, I'm not much of a drinker anyway and it didn't take much before I'd just pass out, after having a fight with my husband or losing it with one of the kids. I hated them and him for making my life such a misery. I even started to take off and do things I hadn't done since I was a teenager, go out on my own to a pub, travelled overseas on my own and unfortunately got myself into all sorts of shit, after meeting other men who I soon realised wanted only one thing. I think there was only one thing that pulled me back. I thought of my Mum and everything she'd been through with my Father, who was physically and verbally abusive, but she never, ever gave up. She kept us all together, never had a bad word to say to me, was always encouraging although I gave her a hard time. I used to think why the hell don't you stand up to my father, but when he turned on me I realised why she didn't. Domestic violence stuns women and children because they never expect it from the person they love.
I had to learn so much to forgive him since he passed away suddenly because he never got to say sorry to me or my Mum or the others.
Life is hard , we don't ask for the bad things that come along. I wish I could say that by doing whatever it is that you want to do, will make you happy. But unless you forgive him, and yourself you will always feel guilty. I'm sure he doesn't want to be sick either. Be kinder to yourself, you have family nearby talk to someone you love and trust but whatever you do won't be easy.
Ten years on and I'm still here with my husband, the kids all grew up and left home. Every day is a struggle for my husband, he has Osteo Athritis as well now, so sometimes can hardly walk with the pain and due to his heart condition he is at high risk for surgery on his hip that is riddled with it. I wish you all the best, only you can decide what is best for you

February 1, 2015 - 5:35am
Susan Cody HERWriter Guide (reply to Anonymous)

Anon,

My heart goes out to you, living like this. 

You can't live like this anymore. 

I suspect your husband is deeply depressed and is not getting help for himself. 

But you are depressed too and are in recovery (thankfully) from cancer. 

I appreciate the awful position you are in. But your children and your own health are top priority.  Nobody knows what's going on but you and your children and if his family isn't helping, they have no business criticizing. 

Anon, I would never tell anyone to separate or divorce but you need a "come to Jesus" talk with your husband. He gets help or you will make some difficult decisions for all of you.

Will you please keep in contact with us?

Susan

January 9, 2015 - 6:58am
EmpowHER Guest
Anonymous (reply to Susan Cody)

Susan,

Thank you so much for your thoughtfulness in responding. I did talk to my husband. And its been a very busy 2 weeks since I posted. We have decided to divorce. Not an easy decision but after talking to not only my husband but each of the kids it was the clear decision to make. And with the financial problems and the divorce we have also put the house up for sale. I will be finding a place for me and the children and he will return home to live with his family. Of course I am the evil monster as far as they are concerned but I can't be concerned with their opinions anymore. They have never supported me or the children in any way and have never helped me care for their son. For so long I have struggled to do the "right" thing but its become apparent to me that the right thing is wrong in our situation. The children are to deeply affected by the entire situation. They care for their Dad but the constant feeling of being unimportant to him is hard. As I said before he is capable of giving them so much more than he does he just really can't be bothered to put for the effort. A new home, no constant reminders of this, and way less financial stress and going with out is what the children really need.

I have just entered into the most difficult time in this marriage yet. I'm overwhelmed and stressed out. Cry half the time. But the other half, I realize that when the move is over, we have another place to live, me and the children will have the opportunity to feel happiness we have not felt in years.

I'll check in again soon.

January 25, 2015 - 9:06pm
Susan Cody HERWriter Guide (reply to Anonymous)

Hi again Anon

They say "the darkest hour is before the dawn" and this sounds true for you. These times will be the hardest of all but you will come through. And perhaps your husband's family might change their minds once they see that his care is a huge challenge. 

Good luck to you-

Susan

January 26, 2015 - 6:28am
EmpowHER Guest
Anonymous

I totally understand how you are feeling. I'm lying in bed in tears feeling heartless because I have just ended it with my partner of 13 years. He has severe copd and is dying. I'm 46 and he is 45. I can't cope anymore and I feel like I'm dying inside. I'm so unhappy and just don't know what to do anymore. My partner is on oxygen 24 7, he is incontinent, has depression, panic attacks and suffers depression. He is moody with me and our 12 year old son most of the time. If he's not moody he moans about everything. He constantly tells me he wishes he was dead. We don't even have a normal conversation anymore, he just wants to talk about himself and his illness all the time. We have not had sex for over 2 years. We don't cuddle or kiss. There is no affection at all. I'm fed up of our son living like this also. He is waiting for appointment with mental health as he is not coping with his life at moment either. I'm aware that we could be affecting our sons mental state. So I am now worried sick about my son too. I just want a normal and happy life for my son and myself. I don't know if I have done right thing ending our relationship but I don't love my partner anymore. Have I done wrong thing, should I just stay together and try and get on with things as best as I can?

December 26, 2014 - 5:10pm
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