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

By Michelle King Robson Expert HERWriter
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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?"

Add a Comment271 Comments

EmpowHER Guest

I am going through the very same thing all of these spouse caregivers are going through. I myself am a spouse caregiver to my girlfriend / partner of 10 years. She's always been a little sickly but 5 years into the relationship she contracted the swine flu and was hospitalized for 2 weeks and had to rehabilitate her motor skills and retrain her breathing from the intubation and sever pneumonia. Since then i thought for sure our lives would go back to normal, but the drugs that they administered to save her life only made the side effects long life lasting. Now she is living with fibromyalgia, chronic fatigue, sever back pain, and a various amounts of severe illness that are too long of a list to take up this box. As her health has progressively gotten worse i only find myself being more of a shell of her partner and not the loving gf i once was to her. Now i feel more like a nurse than a spouse. I find it hard not to think about leaving, but how can leave her knowing she doesn't earn any money, we're living out of her parent's house cause i can't afford to carry the both of us. I love her so much but am so conflicted with the thought of even leaving her. How do i deal with being a loyal spouse and having my guilt over take me? I feel so horrible even complaining about this cause i know she would stay and take care of me till the bitter end, if she needed to. I just can't hang in there anymore, i'm dying inside emotionally and physically and psychologically.

I would like to know if there are any support groups in the los angeles area. I need to see more of you guys but in the flesh. Thanks for all the comments, they've helped me a lot.

October 5, 2014 - 10:06pm
EmpowHER Guest

My wife and I have been married for 16 years and I knew of her potential prognosis when we said I do. I am 46 and she 52. She has Autoimmune Hepatitis along with Primary Schlerosing Colangitus(bile duct).she has had the disease for 22 years and will need a liver transplant or this is fatal. Our marriage was great the 1st 8 years and then her career took off. Although the freedom of the money was nice, our marriage suffered as I began to take a backseat to her work(I do still have my career and work). I was decidedly unhappy and sought help and counseling through our church. Shortly after, her health began to decline to the point that her career ended and severe depression started. She is now disabled and have spent approx. 40+ hospitalizations in the last 6 years. We have been through an addiction to pain meds and live with her Encaphalopathy (extreme confusion and lethargic) on most days. We haven't been intimate in 5 years. Although I love her and miss her very much, I don't know if I will ever have HER back. I work 50+ hrs a week as and then take care her with minimal help from her family. I have been blessed with a great group of friends who often applaud me and then ask how do you do it. I am lonely and feel trapped. I don't WANT to leave, but I feel I NEED to in order to survive this myself. I feel selfish and unworthy of this responsibility anymore.

September 30, 2014 - 6:18am
EmpowHER Guest
Anonymous (reply to Anonymous)

I have been married to my husband for 20 years and 2 years ago he was diagnosed with rectal cancer and surgery . Since then he has had allot of complications. I have been by his side throughout the whole process and he has shut me out in every way it is very frustrating I have also stopped working to be with him take care of him and still nothing on his part. I have lost all hope he is depressed angry and will not seek help and he also battling addiction...All I can say to you is stay strong and I feel sometimes that we need to take care of ourself but then I have guilt of being selfish..Goog luck my thoughts are with you

October 1, 2014 - 10:33am
EmpowHER Guest

I am SO glad I've found this site! I really don't know where to begin.
Although I am not married I am 32 year old woman who is in a relationship with a wonderful 41 year old man. He is quite easily one of the most amazingly generous and fun loving person I've ever met in my life. Whenever I'm with him I feel at ease and just overall better about life! He does have one issue: the issue is that he has many friends and family who use him. They constantly stack their problems on him. He finds himself always paying for other people like helping to pay $500 for for a bill they've been behind on or picking up the tab when his 3 friends conveniently walk away when the check comes. I've constantly tried to tell him that these people are vultures and their only using him. And usually he gets upset when he realizes he's been duped. I've tried to protect him. Well last week all of his frustrations with these people finally came to surface and he's been diagnosed with high blood pressure. Just as I feared! And now I'm feeling like I'm willing to deal with his health issues but I'm not willing to continue to stand by and watch him eat uncontrollably, smoke and deal with his constant issues with his friends and family who frustrate him on a regular basis. I'm willing to stay but he needs to change his life around. We've only been dating for a year. Should I bow out now, or hang around. I don't want to end up with a broken heart, but at the same token I don't want his heart to stop if he doesn't change. I'm just anxious, confused, and upset.

September 27, 2014 - 7:19pm
EmpowHER Guest

Im feeling at the same stage as you. Im 21 been with my husband for 2 years. He sufferd with anxioty which made him aggressive. But fell ill in June and went into hospital with severe vertigo, he has been in hospitol for 3 months. Two weeks ago he was diagonzed with Hashimomto's Enciphiltis. Which they are treating him with sterpids that he will need tostay on for the rest of his life. He can walk feed or wash himself. And heis very agressive. Always puts me down says im an idiot and i cant do thing because i couldnt complete all of his benefits even though i camt because pof data prptection. He shoits at me if i burn his toast. Really simple things he just flips. Im coping enough with his change of health but all the agressive speach is getting too much. But i dont know what to do. He say i cant visit my mum who loves 2 hpirs away. He wants me to always be with him if im out he questions me. I feel trapped and starting to not enjoy life. I try my best to let it go over my head and make him postive. But he get mad at me for dping that too. I just want to live again and have a normal lofe.

September 25, 2014 - 2:30pm
EmpowHER Guest

I'm so glad I found this site because I've been dealing with such guilt over leaving my sick partner- the difference is that when I left he was my fiancé, not my spouse. We had been dating for 2.5 years and our relationship was not perfect- we were from different sides if the country, of different cultures, had different interests and schedules, and didnt have the best communication. Only ten days after my ex proposed, my father died and only three weeks after that my fiancé was diagnosed with a malformation in his brain that could have potentially devastating side effects down the road and was already causing erectile dysfunction...and because of the problem in his brain he is not able to take Viagra because it alters blood flow and this would cause his brain malformation to have problems. So basically, we would never be able to have sex in addition to the uncertainty of his brain injury and the neurological deficits it would cause. I started having violent panic attacks and after a trip to the ER I decided I had to end my engagement. I think I made the right decision but I'm having such a hard time dealing with the fact that I added even more upset to him during this hard time of his life. I feel so horrible. Did I do the right thing?

September 24, 2014 - 2:59pm
Sharon Kay (reply to Anonymous)

We're so happy you found us, too. We have a great community here at EmpowHER, and a lot of wonderful caregivers and loved ones who have had to face similar circumstances. The first thing is, "Did [you] do the right thing?", and all I can say is that it's not that simple; there's right for you and right for him, and it's not clear that either of those is necessarily "right" or "wrong". What is definite is that your feelings are real, and guilt, fear, compassion, anger... they're all completely normal feelings to experience in this kind of incredibly unfair life happenings. While it does seem that ending the engagement was right for you, perhaps ending the relationship is the real question for you. If you're feeling guilty, it suggests that you're not completely comfortable with at least how you handled it and that you are lacking closure. Maybe you need to reach out to him and see how he is doing. Your guilt probably surrounds how you think you would feel if the roles had been reversed, and while he's probably angry at a lot of what he's facing, I would imagine that he would have imagined what he would have done in your shoes, and he can probably relate to the choice you made. He may not even blame you for the choice you made. If he really loves you, he might have really wanted you to do what you did, because he'd want you to be happy. And if you loved him enough to want to marry him, ending the engagement shouldn't necessarily preclude friendship and emotional support.

September 25, 2014 - 10:52am
EmpowHER Guest
Anonymous (reply to Anonymous)

Good morning Anonymous,

My condolences on the loss of your father. I can really understand what you are going through - I went through a similar experience myself this year, when my fiance and I called off the engagement due to the diagnosis of a serious chronic condition. I went through months of internal emotional conflict and it was the hardest decision I have ever had to take. I tried reaching out to as may people as I could as I really wanted to take the right decision - unfortunately, there is no right or wrong in these situations and its just an awfully sad situation to find both yourselves in.

This too shall pass, Anonymous, and as sad and heartbreaking as it all it, you will start to enjoy life again.

September 24, 2014 - 11:55pm
EmpowHER Guest

i can totally relate. 4 years ago my husband suffered a massive heart attack. Come to find out he has 2 different heart disease and 3 kinds of lung disease. we havent been intimate in almost 2 years. There are times when he is really mean to me. Part of me wants to leave rather than watch him waste away. Im at a loss and im dying inside. It is both phyically and mentally exhausting.

September 22, 2014 - 9:26am
EmpowHER Guest

i can totally relate. 4 years ago my husband suffered a massive heart attack. Come to find out he has 2 different heart disease and 3 kinds of lung disease. we havent been intimate in almost 2 years. There are times when he is really mean to me. Part of me wants to leave rather than watch him waste away. Im at a loss and im dying inside. It is both phyically and mentally exhausting.

September 22, 2014 - 9:26am
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