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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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Anonymous

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

I'm so glad to feel that I am not crazy to feel the way I do. I'm 37yo female overall healthy with a 48yo husband who was diagnosed with rectal cancer a year ago, 3 months after our 1st anniversary. I tried to be understanding, I am very thankful that we are not in any financial stress due to multiple insurance policies and very fortunate that both our bosses are very understanding and allow us to be on Work at home as much as we need, but I do not know how much more is in me to handle the emotional toll. Ever since his diagnosis, he has been complaining about "why me" for a whole year -- all through chemoradiation, surgery, and now second round of chemo -- I don't think he ever passed the denial stage. I have been there for him through EVERYTHING, but we are down to a point we don't really talk while we live in the same house. If I check on him, then I'm being "smothering" and treat him like he's 2. But if I don't check, I would not know what's wrong -- and all he said is I am bad at READING the room. He does not care about my well-being ever since he is sick - everything is about him. There are moments I can't handle him and asked him what he think of us -- then he go ahead and tell me "what us" (because he has ED issue after all these), and even go as far as he should have never got married. I'm at a loss of words, and honestly, I feel that if the disease doesn't kill him (which will be most likely), the situation would kill me.

January 31, 2018 - 7:01pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Believe me sister when I say I feel exactly the same. My husband is 60 I’m 47 he has cirrhosis and emphysema he drives me crazy with the constant complaining he doesn’t want to listen to me or anybody else when it comes to his health he thinks now that he can’t smoke anymore he turned to pot edibles drinks all day and is always hungry takes one bite of something says he is full and then starts again in 10 minutes he tells everybody he is always starving all I do is shop and cook and he don’t eat. Oh I forgot he can’t breathe doesn’t want oxygen and never leaves the house except for doctors appt. Meanwhile I can’t even complain to have headache because he brings up how much pain he is in. If he loses his life-because of his illness, eventually he will at this rate, and I don’t get physically ill....I will have definitely have a mental illness because my anxiety levels are very high which then turn into depression and sometimes even hate. It’s a lot to deal with I pray to God give me strength to bear this Cross because this is how I feel now.

January 31, 2018 - 7:57pm
EmpowHER Guest
Anonymous

This comment comes from one who was ill and whose wife decided I should have tried to recover better and said she wanted a separation for at least six to twelve months and didn't want to see me. To start the story in 2004 I was diagnosed with genetic Cardiomyopathy. My Dad died from it when he was 40 and one of my brothers has been going strong 15+ years after his transplant. I kept working till 2010, when I had to go on disability because when driving to work everyday I was starting to fall asleep at the wheel. Heart was working about 20 to 25% of someone who had a good heart at my age. Went 5 years at home on disability with limited function. Then basically went into the hospital for periods of 8 months and 3 months straight. Went through kidney failure 30 days after entering May 18, 2015. VAD put in June 19, 2015. On dialysis for around a year (June 2015 thru April 2016). Four open heart surgeries and three emergency ambulance trips. My driving force was to live for my wife, step-son, daughter and granddaughter. In retrospect I should have taken time from concentrating on recovery to spend more time with my wife. It was only after she wanted me gone, that a social worker said that "stress" of caregivers can sometimes overwhelm them like a tsunami wave. She became a different person, watched different things, changed her interests, among other things. That was the reason and I we were not told about that slim possibility and we were on separate pages going through the process. I was devastated and lost. How could this happen and why? It took me over a year after we separated that she finally showed me some blogs she had made while I was recovering, showing the depth of her despair and loss of faith. She had given up months before she told me and it was another year to see her words in the blog (not in person). She was 56, I was 65, so there was also the age difference. If anyone on either side of an illness and caregiver starts going down that road, they need to see the counselors immediately. (Just a must for future persons going down this path). Being a Christian and human, I have done many mistakes in the past, two failed marriages, one my fault, one was the others. This one I was determined to not make similar mistakes. I learned from the past, but never knew what this was to bring. I made it through faith and prayer (and God's Blessing and Grace) but then everything was gone or left me. I won't go down the problems with my daughter/granddaughter which was the final blow. To me it was for better or worse, good health and bad, richer or poorer, to death do us part. I didn't want to fail. We both did and I can't blame her for leaving. It took months of talking to friends, counselors and ministers to come to the realization that it was over. Sometimes it is so hard to understand God's plans and reasons for us. So, even though I wanted to stay married and live by God's Word, there was nothing I could do. Well, there was. Fight my way through the anger, depression, sadness to get my soul, heart and brain back to a forward looking set and listen for God's voice to tell me. God Bless BOTH and ALL of us who have to go through a long-term and debilitating journey. There are only two futures. One with God forever, or one a gift back to our human journey through God's Love.

January 12, 2018 - 1:43pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I am a 58 year old woman, married to a 66 year old man. We are both in good physical shape. I have a social work history of 30 years. Had to go on disability three years ago due to worsening of my Multiple Sclerosis and daily migraines. I go to sleep every night at 6pm as I cannot stay up any longer in such pain. Wrap an ice pack around my eyes. My husband and I still love each other after 28 years of marriage, but he cant handle who I have become. I am so devastated that he is leaving me for a trial separation. I don't want to think of one day without him. HELP!!!

January 25, 2018 - 2:32pm
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
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