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

By Expert HERWriter January 7, 2009 - 10:17pm
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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

It’s not you, it’s him. I’m in a similar position. I’ve become disabled and now my illness has reached the terminal stage. My wife can’t understand how I could be so strong and endure the hardships we’ve faced, then become this fading shadow. It’s BECAUSE I was so strong, because I endured and never complained, never sought help, never went to the hospital no matter how bad I felt, that my illness was not diagnosed until it was far too late. Your husband isn’t trying to hurt you or deliberately being mean, it’s a combination of fatigue brought on by his illness, guilt at not being able to do what he feels he should, and just general frustration misdirected at you because you’re the only one there. I hope you can find the patience and understanding to bridge the gap and come together again. For me it happened after I had almost completely separated our lives, I’d been sleeping on a sofa for a year and more, we never talked, only fought. I kept paying the bills and asking for nothing. When the money ran out I set up my handicap van to live in and got ready to leave, I intended to go live homeless on charity and government assistance so that I could use my SSDI check to share the family expenses with my wife so she wouldn’t have to struggle. At this point she came to me and made up, wouldn’t let me go off to die alone. It was her choice. I’m glad she chose to take me as I am, since then we’ve grown close again and are helping one another as best we can. Now we only argue while Im preparing for my death because she wants to believe I can recover. Good luck to you.

May 15, 2019 - 5:27pm
EmpowHER Guest

I've been married 18 yrs as of last month. Hasn't been an easy road. I've dealt with his alcoholism, 5 dui's, rehab, jail, cheating, verbal abuse, then came cancer (which he beat), then sepsis, then a heart attack and now a brain tumor

October 14, 2018 - 7:31pm
EmpowHER Guest

I am in an almost identical situation. I have been married to my husband for 5 years. When we first got together I knew that he was ill.....he has a chronic heart condition and a pulmonary embolism that could rupture at any moment and kill him. He also suffers from chronic fatigue syndrome which means that he sleeps up to 14 hours per day....sometimes more. He has become increasingly dependent on me and because I love him very much I do not mind being his full time carer (he absolutely refuses to allow me to ask our Doctor for outside help). He is now struggling to walk or even stand un-aided. I have to help him bathe and he is a well built man and I really don't have the physical strength to do this for him but there is no-one else who can help.
I never get a break....I haven't had a holiday for years.
However, it is his mental condition that I am REALLY struggling with.
He was diagnosed with Schizophrenia some years ago when he was sectioned after having a breakdown. This was before I met him.
His moods and rages are just awful.....a couple of times he has been physically abusive to me.
The things he says to me during his rages are terrible......I end up in floods of tears, which is very unlike me.....I used to be so strong.
I have clinical depression and in all honesty I no longer know which way to turn.
Oh and I almost forgot...... and he also has a drink and a gambling problem.
I am not blaming him.....it isn't his fault that he is mentally and physically ill........I feel so sorry for him.....and I know that he does love me very much.......but I don't know how much longer I can cope. I have started to feel so tired and drained all the time......really exhausted.
I could go and live with my sister if I wanted to (she has offered).......but I know that the guilt of leaving him would destroy me. He has no-one in the world but me.
What worries me is that recently I have been toying with the idea of suicide......and I believe that I would do it but for the fact that this would leave him entirely alone in the world, and what sort of woman would I be if I did that? But the idea is definitely there in my mind, growing like a seed.
In many ways I feel more like his mother than his wife........I am sorry for going on about my problems.....I guess I just needed to release what I am going through to people who I know will understand.....thank you for listening.

September 20, 2018 - 5:24am
HERWriter Guide (reply to Anonymous)

Hello Anon

Thank you for reaching out to us. Please talk to someone about what's going on. If you are thinking about suicide, please don't do it. People love you. Talk to the national suicide hotline at 1800-273-8255. Many of the people you will talk to have walked in your shoes. They know how you feel - they have lived it themselves. Lines are open 24/7/365. Please call.

No matter what - you don't have to live with physical abuse. You can leave. Consider living with your sister and you can still care for your husband. This is a safer way to do things without feeling the guilt of leaving him. You need to be safe.

Feel free to talk with us anytime.

September 20, 2018 - 3:46pm
EmpowHER Guest

I was in a relationship for almost 18 years and married for 10 of those, and my husband suffered from MS the entire time. He had been an outdoorsy man, pilot, wood-worker, hunter, fisherman, and earned his living as a cop. But as the disease progressed, he too physically deteriorated and was in a wheelchair for the past 7 years. He too was angry and mean, but like you said, who wouldn't be? I sought individual counseling, caregivers counseling, and together we sought Christian counseling and nothing seemed to help. So, pushed to what I thought was my limit, I decided we should separate because the relationship had gotten so toxic and things were being said that we hurtful and couldn't be taken back. Before leaving, I tried to find additional caregivers (we had two because I had hurt my back caring for him) and even a possible roommate so that someone would be there through the night, but he made that difficult, so when I left he had the two caregivers that would come in the morning, afternoon, and evening. I felt like I had done everything I could to make sure he was taken care of. Three weeks after I left, my husband passed away, sad and alone. I'm sure you can imagine the guilt and regret I'm feeling, but unfortunately there's nothing I can do to make things right now. I never should have left. He couldn't help what he was going through and I should have understood, but I didn't and there's no excuse. No matter what you're going through, just remember that its the disease that has taken control. I would urge you to hang in there, no matter how much time your husband may have left. Take care of yourself by trying to find others going through the same thing, reach out to friends and family and your Church for support, go to the gym to work out your frustrations, but stay. Unlike me, remember your commitment to your husband...in sickness and health. God bless.

August 20, 2018 - 8:23am
EmpowHER Guest

I think it's a product of bad math and statistics. Women are just as likely to leave when a husband gets sick. You wont find stats or complaints because men dont talk or fill out internet reports like women do. My wife left me when I got diagnosed with lupus and had to go on disability. She kept everything and I was to sick to fight. Since then I have met many men in the same or similar situation. Most don't want to talk or think about it.

July 30, 2018 - 2:29pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Yep brother we are out here. Women leave sick men too. Funny thing is; I still love her enough to want her to be happy. Being as sick as I am I knew being bitter and angry wouldn’t be a good choice so I helped her leave and wished her well.

January 6, 2020 - 11:36am
EmpowHER Guest

I completely understand. I am 33 and my husband is 37, when he turned 30 he started having muscle movement issues, seizure activity, depression, and now 6-7 yrs later we still have no defined answer but he is now disabled, in chronic pain and his memory issues have been traced to mild brain damage. In some ways I still see the man I married an love. But for the last several years it has felt like being a nurse and a parent, rather than a lover and wife, sex became a 1-3x a month thing and even then all I felt was bad cus I could see his pain. He would still say sweet things and hold me, but considering I was left with everything at home, all the financial responsibilities, stress and worry...I felt more smothered, and then guilty for nagging him, but I worried and sometimes it felt he didn't, but I knew he still loved me.
His health got to the point I worried non-stop at work and hired a guy friend to help, that led into flirting, then me pushing my husband towards letting me take on this friend (and now my husbands caregiver too) as a BF, hubby was thinking about it, but I got weak and the friend was already tested (im a nurse in career too so I was being safe)..I grew weak in my lonliness and slept with the friend 2x, he pushed me to tell hubby, I did and he instantly forgave me....I then had a sick hubby and a bf...but bf started looking elsewhere cus he had fallen for me but felt he couldn't handle sharing me with my husband, he slept with a girl and then confessed to me...(this lead to me developing trust issues)....hubby was there every time I was upset with BF and visa versa...but the closer BF fell for me, the more he didn't want to share me. I realized the main reason I was still with my hubby was guilt that he wasn't gonna get better, and needed me. I requested a separation, hubby started acting passive aggressive with BF and BF lost his temper and hit hubby. Cus by now hes viewing it more and more as this man wants to steal his GF and keep her by guilt. Hubby did not call the cops but moved out. BF felt guilty for losing it and started going out of his way to make it up to hubby, but he still wants hubby to move on and let me be happy because I still financially support him a lot. I still take care of hubby but he keeps asking me on dates, not even trying to take care of himself...is great when txting but in person I can see how he is doing nothing to take care of himself and he states its depression, that he misses me and wants me back even if he has to wait years...this hurts BF cus he wants to feel like BFs friend again, but cant as long as he feels I could get pulled back out of guilt. I love my BF and it is nice having an actual partner, but its hard cus I have 3yrs with hubby.....did I mention all of this constant pain and guilt pushed me to attempt suicide 2x, and I border on it still because one I feel NEEDS me and loves me...and the other I feel loves me....and if I pick either I hurt the other....so yeah...I know how you feel x10.

March 16, 2018 - 1:05am
EmpowHER Guest
Anonymous (reply to Anonymous)

Wow... that is twisted as hell. Do you maybe think you are using both to boost your self esteem? Maybe it's time you took a look and did the right thing and divorce your husband and dump this guy that you took on as a lover because neither is going to be good enough as you still live your old life and you all need to move on. You knew husband issues yet you still left him blaming his condition. Should have read into it before committing. Sorry but you only have yourself to blame for being in this position.

June 17, 2018 - 8:30pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I sincerely do not feel sorry for you. When is ok to sleep around? You have trust issues because YOU are untrustworthy. What is sacred? Anything with you? I guess its me, me, me with you. I sincerely can't believe you live this way. How would you feel if someone did the same to you if and when, because we all do, get sick? Karma, karma..

May 25, 2018 - 3:50pm
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