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?"

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EmpowHER Guest
Anonymous

The person you married is gone, replaced by a sick person who has to develop a different life for himself (to deal with the illness). Take care of yourself, and let him take care of himself. You are both in shock, dealing with your own reasons for being angry, fearful, guilty, etc.

Be kind to yourself, and forgive him as best as you can. You can't rescue him, and you are drowning while attempting to do so. Frogive yourself for not being able to do the impossible.

You each have a chance to develop better lives apart from each other, instead of sticking together in the hell that you're both currently experiencing. I wish you both the best!

July 30, 2015 - 11:18am
kiwitoo

I'll tell you what type of person leaves their sick spouse - my husband. Nearky 20yrs and I helped him raise his kids, supported everything he did, ran his home eceveven though I was in pain from rheumatoid arthritis, got back on deck as fast as possible after every surgery and was back in the kitchen ten weeks after a brain stem stroke. ..when the drs thought I'd still be in hospital. .and I get this because hes "run out of puff"
Bull. Run out of puff runnirurunning two relationships more like it.

July 27, 2015 - 9:59am
EmpowHER Guest
Anonymous

I'm looking for advice too although I am in the reverse of this situation. I have Ehlers Danlos Syndrome which was very manageable until I fell pregnant, at which my body fell apart. As a result, I have been left a whole host of other issues so my husband and I have both had to quit our jobs, me because I struggle with day to day things and him to look after me and our daughter. But I feel trapped and often wonder if I even want to be with him anymore.

I love him, I do, but he doesn't get me or my illness and he's really not cut out to be a carer. Before I met him, I knew where things like my keys and bank cards were but since my illness, most of the time I have no clue as I never need them and he has a tendency to move them around. I get really stressed out which worsens my condition especially as he always blames me for him moving them or doesn't remember moving them at all.

On top of this I feel like I get no co-operation from him when it comes to meals and money. Having spent so long with mobility issues, I have gained a lot of weight. I desperately need to lose it as it doesn't help me get better and I have been refused treatment because of it. He provides all our meals and he appears to be unwilling to do any changes that would enable me to lose weight. To the point where he is barely cooking and either ordering us take-aways or dragging us to restaurants. When he does cook, he never takes into consideration my medical dietry restrictions and will rarely cook vegetables.

I don't particularly want to be apart from him, but I often feel for my own health and benefit that I cannot stay. On the same note, I feel I cannot leave. I wouldn't easily manage our daughter and he's made it very clear that should be ever split he would fight for sole custody. I definitely don't want to live separately from her and I worry about her well being if I wasn't there to try and even out the bits he can't be bothered to do.

July 8, 2015 - 9:11pm
KristinMeekhof HERWriter (reply to Anonymous)

Have you tried therapy/ counseling with a licensed professional? Sometimes we have blind spots so to speak with our situation and another person can give perspective and clarity into your difficult situation.

July 29, 2015 - 6:17pm
EmpowHER Guest
Anonymous

My husband and I have been together for going on 8 years but just got married last month.

Shortly after we met and began dating he let me know that he had lost both his kidneys when he was a child and now had a transplanted kidney that he had received when he was twelve.

This didn't change anything for me. Growing up my aunt had battled diabetes and kidney failure, it was something that my entire family had battled my entire childhood so it was a condition that I was familiar with.

For the first three years of our relationship everything was fine; he had regular doctors appointments, had to drink tons of water and had to take insane amounts of medication to keep the kidney going but this was nothing that I couldn't handle.

Then in 2010 his kidney failed; the next two years consisted of constant dr appointments, in home dialysis, traveling to other states to get on the kidney transplant list. For two years the only time I left the house was to go to work. I hooked him up to his dialysis machine every night, cleaned the sight where the tube was in his abdomen, sat in the ER with him on countless nights and even got tested to give him one of my own kidneys.

During this time the man I fell in love with disappeared. He became depressed, he no longer had any energy, lost every bit of his sex drive and pretty much just treated me as his nurse. Although I thought about leaving occasionally I always pushed the thoughts away and reminded myself of what he was going through.

In 2012 he received his transplant from a deceised donor. After the transplant things took a while to go back to normal, although it did take a while.

But in the past year everything has changed. He has been having horrible migraines and barely sleeps. His kidney is fine but he cannot seem to get rid of these migraines. At times I seriously consider the possibility that he has developed split personalities, sometimes he's perfect and is the man I fell in love with and that I married but then there are other times that he becomes a completely different person. He throws things, cuses, calls me every name you can think of, breaks things, blames me for anything and everything and more.
I just don't know what to do. When he's good, our marriage is great, it's far from perfect but we work together and things are fine. But when he's stressed or in pain and the other side of him comes out all I can do is cry and pray that something changes. I just don't know else to do. I try not to argue back, telling myself that he's in pain and he's feeling out of control but sometimes I can't help but yell back. I honestly just don't know what to do anymore, I really don't

June 23, 2015 - 7:58pm
EmpowHER Guest
Anonymous

When I sick my wife left me. After 15 years raising her daughter and provide for both. Now I talked to her a few weeks ago. And she was being nice. I was letting her know I was getting worse.
So then she ask how much insurance money she would be getting. I would not tell her. She quit talking to me now. So I take it this must be my fault as well from the rest of the post on here.

June 21, 2015 - 8:47pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I'm so so sorry dear. Praying for u!

June 26, 2015 - 10:26pm
Susan Cody HERWriter Guide (reply to Anonymous)

Hi Anon
If your ex wife is looking out only for money, you need to get a divorce so that anything you have goes to your daughter and other people you'd like it to go to. I'm very sorry for your situation.
Best,
Susan

June 22, 2015 - 5:04am
EmpowHER Guest
Anonymous

I have been with my partner for 9 years. What are support groups called for this?

June 21, 2015 - 6:23pm
EmpowHER Guest
Anonymous

I understand exactly how you feel. My spouse was diagnose with a Brain Tumor hopefully non- malignant, but she has changed drastically since the diagnoses. I feel trapped, unwanted, unappreciated, unloved and so much more. I feel awful feeling this way, but I really can't take it much longer. She could care less about me and I mean like I could die tomorrow and there wouldn't be any remorse whatsoever. I feel somehow she blames me for her diagnoses. I have assumed ALL the responsibilities of running a household with two children living at home. I'm going to a counselor this week, because I need to understand or at least try to. I feel that my life has ended!

June 20, 2015 - 11:34am
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