Facebook Pixel
Q: 

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
 
Rate This

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?"

Add a Comment529 Comments

EmpowHER Guest
Anonymous

I took care of my husband from the 7th year of our marriage and two children. He was diagnosed with multiple sclerosis. I took care of him at home. He had the college education and a large family who wouldn't talk to us. I came from a traumatic childhood. It gave me survival skills and i worked at times 5 jobs to make ends meet as he was home on social security, paranoid, angry, went from sweet to beligerent. Cognitively he left our home 7 years into our 38 year marriage. I went to counceling to help my now successful 33 year old son n my P.H.D. daughter. He wouldn't accept what was happening. I think I cried more than laughed in all our yr.s married. He is incompetent and I have been told I would lose my home n shirt if I divorced him. He has been residing in a nursing home since I was diagnosed with a rare form of incurable cancer at 46 then the same for my son at 20 and my daughter at 17. Life has n is hard. He went into a home when we could no longer take care of him n cancer surgeries for each of us over n over. Tho it's been 9 years since he has been in a home we are still battling out own illness he can't remember. I did catheteri g diapering all his ADL'S. Now I nearly died on two hospital procedures last year. I'm now on social security disability. I filed a spousal refusal years b4 he went into the home n he signed over the house to me. My son moved out of state with his wife n doesn't visit nor talk to us. He is an ostrich w healthcare. My daughter n her husband are my only family. Life isn't easy. But then again it never has been worry free for me. I visit my husband often with my daughter we r his advocates. I love him like a child. Even if I had divorced him I still got I'll n took my kids into the nightmare with me. I don't know about my family n the gene for our disease is from one parent it isn't recessive. I watch my daughter Persue her dreams my son lives as tho that day is his last. Me I'm always hitting road bumps n rare parts of this disease are still being discovered. I'm kept comfortable. I miss having a special person I lost my best friends n all our friends during my husband's illness. We couldn't keep up with what they could do. Then my illness n my kids we had to take care of the other. It's a nightmare. Nobody wants a women with an ileostomy and port. Visits to the hospital etc.. I miss hugs kisses a private sounding board. I don't know what it's like to vacation or be loved my daughter loves me but her husband is jealous of how close we were. Even tho the love between a mother n daughter isnt the same as having your own love person. All my comforts were taken from me. I'm sorry but if you sign a spousal refusal n can keep the house n support yourself hind sight being 20 20 divorce but stay in touch. Be his advocate n keep an eye on him at the home. Don't wait it doesn't get better. It sounds cruel not a day goes by that I can't accept where he is .my daughter said he has done much better since he socialized in a similar age people who have m.s. they slowly have died off n only a few are left all men. But we make time for him n celebrate all holidays with him. I just find our lives are so much in crisis. I worked through chemo it doesn't help. I got promoted and my social security equals that of my husband's. I'm new to being disabled at 59. I'm a youthful59 but boy the years are tough. The stress with facing all of this has been hard. Divorce, care, stay involved, n recreate your life b4 it's too late. Sick is no joke n we were hit 4 times with incurable diseases. I speak from loving the man who really has been 5 yrs old since our 7th year if marriage. I won't divorce I can't who would want me anyway , right. I'm alone sad n can empathize with your situation. Cleave to family n friends b4 they let you become a distant blip in their path.

October 29, 2017 - 9:30pm
EmpowHER Guest
Anonymous

I'm so low, I'm so unhappy, I'm in a similar situation to others who have commented. Some of you are so strong I'm full of admiration for you, I've only been caring for my partner for four years yet feel it's been a lifetime. I gave up work to care for him full time he's controlling, verbally abusive, tells fibs and has alienated me from friends but to all who know him he's a marvellous man. He's very good at behaving when people are here, he's even got me questioning my own sanity I don't know what to do. I'm worried he will hurt my son if I leave, he's fallen out with my adult son and is already saying if I leave he will have him sorted out. Who can I talk to without them thinking what an awful person I am wanting to leave my disabled partner. He says he loves me annd promises to change but I'm terrified that this is my life until I die, but who's going to believe me,his friends think he's wonderful. So sorry to moan, please advise re moving forward xxxx

October 15, 2017 - 3:39am
EmpowHER Guest
Anonymous

I left my abusive, violent, alcoholic and disabled spouse when we were both 70. I was planning to leave him years before, had already left once and went back, and he had a stroke before I could get my plans in place to leave for good. Caregiving a mean alcoholic man for two years like I did is hell. He refused to support me financially. He called me filthy names before and after the stroke for no reason at all. Just out of the blue he'd start in. He ranted, raved, yelled at the TV as well as me. I took care of and maintained a large house all by myself. Fixed the toilets, replaced faucets, removed snakes from the swimming pool, because he refused to hire someone to do those things. I could not afford to hire the person with my money because my income was 1/6 of my husband's and all of it went to pay our mortgage, food, other needs. He canceled his life insurance that would have benefitted me if he died. He wanted me to sign over my rights to our marital home so that his kids would inherit it - and I'd paid half the down payment and my share of mortgage payments. Oh, and I would be allowed to live in it after he kicked off as long as I paid for insurance, maintenance, mortgage, and everything else concerning the house. Then his kids get what I have paid for. I left and have no regrets even though I agonized over the decision. As far as I'm concerned he broke his marriage vows first by not loving, honoring or cherishing me, and he had no intention of ever doing so or providing for me as the Bible instructs. If you can get out of a situation where your spouse is destroying you and everything you hold dear, GO. They are evil and don't deserve your sacrifice.

September 22, 2017 - 7:29pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I give you a lot of credit for leaving your husband. I am in a somewhat similar situation. My husband and I have been together for 18 years and married 3 years. He is an alcoholic and developed cirrhosis 6 years ago. He was a very charming man who everybody loved but at home it was different but I put up with it because I'm strong and always looked beyond. Last year my husband developed emphysema which crippled his breathing and was forced to go on disability in May of this year. Since he's been home his drinking has gotten out of control which made accelerated his liver disease and there is nothing left for him but a liver transplant which he will never get because he's an alcoholic and I know I for sure no doctor vouch for him (I know I wouldn't). His breathing has gotten worse too he can hardly make it up the stairs anymore. Depression has kicked in making matters worse. He is nasty, mean, grouchy, picks a fight out of the blue, blames me for everything that goes wrong AND I MEAN EVERYTHING, curses me out and insults me and my family all the time. I have no friends left because nobody wants to associate with me because of my husband. I want to believe that it's his medical condition is causing these mood swings and change in personality however, I can honestly say I am miserable. I can't leave him because with my salary It would be impossible for me to make ends meet. It's sad to find out there are so many others like me out there. We have to stay strong and for those who can get away from the situation I admire your courage.

November 16, 2017 - 5:21am
EmpowHER Guest
Anonymous (reply to Anonymous)

I think you are such a brave person for leaving your marriage at 70 whatever the circumstances! To have such self is truly admirable - you are a fine example to everybody who are victims of an abusive relationship and boy, your ex husband sounds like one mean, cranky, angry person. I hope you find happiness in your new beginning. xxx

September 24, 2017 - 2:22pm
EmpowHER Guest
Anonymous

Can you hire a home care nurse ,And house cleaner , ? To help take away some of your responsibility s ?
Then take a vacation with your friends or self . For a week .
Still keep the Nurse and house keeper , when you return .

September 11, 2017 - 12:21pm
EmpowHER Guest
Anonymous

Looking for advice also here, I am a 32 year old female who has been with her partner 13 years, carer for 9 years to my partner(not married but co habitating), he has chronic life long incurable illness alongside other health issues and recently a reoccurrence of serious mental health issues. I gave up my career(gladly) to care for him a while back and as result of caring have been seriously ill which I'm trying to recover from myself. He is loving and kind (although the mh issues are creating a lack of intimacy and mood swings) however we now realise the life I may have hoped for travel etc won't be possible with him, I'm trying to be honest and explain that he cannot meet my needs (physically,emotionally)and I understand that ,however as we have no other support system I am the caretaker of everything, he says I don't have to be but there's no one else to pick up the pieces. I want to be single now just to live alone but I feel so trapped because he will have noone to care for him and also that I would be making a mistake. And I also feel like a horrible person leaving because I have had enough I have felt down and sad for a very long time now but noone to discuss this with who isn't apart of our inner circle of mutual friends. I also am now tied to my partner in regards money etc also now with welfare (thankfully we don't have kids or a mortgage but my work day savings are gone)I answered if God said tomro if I could be single would I I said yes but i feel horrible because he is loyal faithful and treats me the best way he knows how, (those qualities are hard to find in a partner)i feel hopeless trapped and also taken for granted, like my life doesn't matter. Thanks for listening, if anyone has constructive advice or tips I would be grateful and to everyone out there i am reading your stories and comments , I have no advice to give but I am with ye in spirit and hope that ye also find a resolution.

September 7, 2017 - 9:42pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Omg, if you're not married and y'all are only cohabitating, then what the heck are you waiting for??? Just RUN, and do it NOW! He did not deal the deal with marriage, so you have absolutely nothing to feel guilty about. Go live YOUR LIFE and be HAPPY!! Playing house does NOT equal marriage. Go! Let him sort his own single self out; and you go LIVE!! ❤️

October 10, 2017 - 7:51am
EmpowHER Guest
Anonymous

I am 30 and have been with my partner for 10 years. We aren't married. He is in chronic body pain equivalent to a women in labour 24/7. A few months into dating I moved in and automatically took on the role of his care giver. Besides his pain he isn't very healthy at all, i try and motivate him to live a healthier lifestyle (to help his quality of life and his pain) and he resists. Even his hygiene is REALLY lacking. On top of that, he is always stressed out, negative, snappy, rude, verbally abusive, disrespectful and emotionally disconnected. And he demands sex every day. He blames his behaviour on his chronic pain which is a valid point, but my question is where do I draw the line? Is that really a valid excuse? I see all my friends having fun, getting engaged, enjoying life and all I do most days is cook, clean, and feel alone... and I'm so young. No dates, no flowers, no excitement, no appreciation. But is it selfish of me to expect those things when someone is ill? For the rest of my long life... any insight would be very appreciated.

September 1, 2017 - 10:39pm
EmpowHER Guest
Anonymous (reply to Anonymous)

LEAVE HIM. HE IS A NARCISSIST ! You need to RUN NOW.

October 29, 2017 - 9:37pm
Image CAPTCHA
Enter the characters shown in the image.
By submitting this form, you agree to EmpowHER's terms of service and privacy policy
Add a Comment

All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.