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

By Michelle King Robson 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

Hello, I am 41 years old and my husband had liver disease. We have been married 16 years today. He was on the liver transplant list for for three years but sick a total of six years. Being married to someone who is very sick isn't easy, especially for the ones who is caring for them. I felt like nothing I did was enough, he always told me how thankful he was to have me, but his ammonia level would go up and he was a total different person, nothing I said eased him, nothing I did helped the situation and once his levels come down it was a totally different environment, he didn't remember anything and to be honest his sickness took over my life. I was always on the computer trying to find ways to cook better for him, trying to find things that would help his health overall, plus worked a full time job and took care of two teenagers. Sometimes I wanted to give up, there were days I didn't know how I was going to find the energy to do what I needed to do. All I could do is pray that god would get me through this. October 9,2015 we received a gift, he received his new liver. Within days the man I married 16 years ago was back, he only stayed in the hospital 6 days, they called him the miracle transplant patient. We still have our ups and downs, its only been three months but I have to remind myself that its only been three months. I guess I thought once he received his new liver our lives would go back the way they were. I've realized that our life will never be back 100 percent but it will be close. Please keep your faith, I know its hard, I know your tired and wanting to give up. I want to let you all know that I will keep each and everyone of you in my thoughts and prayers.

February 11, 2016 - 2:43pm
EmpowHER Guest

It is so sad to see so many people struggling with illness on these pages and the caregivers fighting to 'do the right thing'- feeling guilty for resenting the situation they're in and struggling to redefine relationships which are no longer fulfilling. In every post there is pain and suffering evident on both sides. Those who are sick feel powerless, angry and helpless, and those who are trying to care for the other- feel just as powerless, angry and helpless. Dealing with chronic illness is purgatory for all involved and seems insurmountable. I have a sick spouse who is too ill to work diagnosed with both cancer and advanced kidney disease, three children, a tough job and not much of a social life outside of the daily grind. Why do I stay? I think it is a deep seated sense of morality, compassion and love for the family unit as a whole. We don't have a relationship that could be considered normal in any way and the illness has changed both of us. Certainly this wasn't what I expected when we married 20 years ago. I am angry about it and it is unfair- but it's unfair on him and the children too.

I think we should all applaud our collective resilience and remember to find the light and fun where we can. Be good and kind to yourselves and keep hope alive. Life is a precious and wonderful thing. Don't waste it.

November 21, 2015 - 1:07am
EmpowHER Guest
Anonymous (reply to Anonymous)

My husband is also ill......... cancer of the tonsils & soft palate. He's been disabled for 8 years. He sleeps 18-20 hours a day, goes from chair to bathroom, is often sick, & hasn't made love to me in more than seven years. I am so lonely & inconsolably sad......... :'( I am a Christian so my faith in Christ keeps me going but I'm exhausted. I pray for his passing.......... I don't know how much more I can take. The other day I told him I just wanted to be happy again. He wrote on his dry erase board, "Happy is long gone." :( Please pray for me. Teresa

November 26, 2015 - 2:30pm
EmpowHER Guest
Anonymous (reply to Anonymous)

My heart goes out to you. Your husband sounds a lot like mine. I believe that if you love someone or something, you set them/it free. My husband was controlling and selfish before his illness, and is even more so now. He wasn't very nice to me when he was healthy. He blamed me for everything wrong with out marriage. He was raised by two very angry women and never had the guts to stand up to them. He has, over the last twenty plus years, taken his anger for them, out on me. I care for him, but I want a life.

December 30, 2015 - 11:30am
EmpowHER Guest

My wife has desmoid abdominal tumor from hip to rib cage. Radiation on stomach along with other things too much to mention. Personality change, sleeps all the time or tried too high meds opioids. Married 25 yes. I understand it's the chronic pain insomnia and not being able to do anything and not her. I will support her for the rest of my life at arms length as it was killing me. I have done this for 8 years now. Is it wrong for me to live and enjoy myself with another person?
I would never do anything that was not out in the open.

November 11, 2015 - 4:18am
EmpowHER Guest

I totally understand how you feel! My boyfriend (basically husband) and I both retired and moved in together five years ago when he was newly diagnosed with ms. He has gone from the man I knew for 30 yeas to a complete stranger. He is mean and a smart ass. He has ice water in his veins towards me and very frankly my children. And he NEVER apologizes. He does not believe in apologies. I want to leave him. I will always love him but I can't stand the person he is now. He absolutely refuses to come to any kind of acceptance of his disease. His first sign was 10 years ago and affected his eye. He fully recovered. Five years after that his next attack affected his leg. He did not get that back. He uses a cane. Refuses to use a walker or a scooter or a wheelchair therefore we can't go anywhere really. He refuses to stretch he refuses to walk he refuses to do anything and blames that on me! It's my fault that he can't do those things because I don't do them with him! I am an 8 year breast cancer survivor who had a spinal fusion two years ago. I walk 5 miles a day at my job so no I don't feel like walking after work! We have a beautiful bike path and walking path right next door to our hous but it's my fault. Everything is my fault. He hates my kids and grandkids. Can't stand being around them and I can't stand him because of that. But I am stuck! How do you leave a man with ms without being the worst person?! He has PPMS when diagnosed but at last doc appt was told it is a more progressive ms now. He calls himself a cripple. He refuses to go to a support group and sit around with a bunch of cripples. He refuses to talk to or with anyone about his ms. He has no family or at least no family he wants anthing to do with. He sits around the house about 90% of time moaning sighing and bitching. I'm just at my wits end. I give up. After this past week and his 3 day attack on me which caused me to break out in shingles....I'm just heartbroken and totally had it. I have no good advice.

October 16, 2015 - 6:34am
Susan Cody HERWriter Guide (reply to Anonymous)

Hi Anon
It sounds like it's time to leave. This man is abusive regardless of his medical condition. He is not your husband, you are free to leave with no legalities in the way whatsoever.

Don't spend the rest of your life hating your life. It's ok to give up on the relationship, it's a terrible one.

November 6, 2015 - 3:56pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I'm going through the same thing with my husband. Married 36 yrs. He has had 4 subnarcnoid hemorrhages. He is mean to me, doesn't speak to me. I have no support from anyone. My kids don't even visit us. He has no family he is close to. It's so hard financially. I have alot of health issues . I'm in so much pain from a drunk driver hitting me, fibromyalgia,level 3 neck fusion.Too many things to post. Not sure what to do next. Doctors are not helpful.

October 17, 2015 - 12:57am
EmpowHER Guest

I have been married for 32 years. I married while still in high school. About 5 years after getting married my husband became very ill with a brain tumor. He worked and provided for us so I then had to go to work and leave our 2 small children to provide for the family. Over the years he did chores and helped in every way possible. He was the perfect husband and father. He later returned to work but again became ill with cancer. I put my job and family on hold traveling out of state to get my husband the best of care. He has been so sick. To the point of having a feeding tube, IV fluids, and me giving his daily baths. It has been such a struggle. He has always been so good to me and our children. I remember having the flu onetime and I was so weak he gave me a bath. So you see, yes he has been sick more than me, but we have always taken care of each other. Yes it's been so hard. He has been in hospitals for months at a time. My wedding vows said in sickness and in health and I don't take that lightly. We have had many bad days through this also where he was grouchy or myself. Stress causes this. I was getting ready to go in for surgery to repair a herniated disc in my lumbar spine when my husband became ill with cancer. I have put this off to take care of him. He has been urging me to reschedule the surgery due to the pain I have and it is getting worse. Next month makes a year since we found out my husband had cancer. He no longer needs a feeding tube or daily IV fluids. He is slowly getting his strength back and again does as much as he can to help me in the house. And I know that when I go in for my spinal surgery, my husband will be there to help take care of me. That's what marriage is all about, being there for each other.

October 12, 2015 - 8:16pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Thank you for the hope you have given me in reading your story.

December 25, 2015 - 4:50pm
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