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

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.

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.

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.

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

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.