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

I've also lived 5 years with a spouse who has terminal cancer. It has been all about him. He has opted out of being a dad and hardly talks to his 2 daughters and never does anything for them. He puts all his efforts in trying to keep working ( he's a workaholic). I organised his medical treatments, looked for life saving procedures and kept him going far longer than his prognosis as I have a medical background. I feel like a sole parent and I work as well. He's never even said thank you or has done anything for me ( by that I mean even offered to make me a tea). I've run out of giving and of love and planning to leave. He may only have a few years left, but I also feel like I'm dying inside. On the outside people don't really know how hard it is to put your needs on hold for years. So all I really want to say is I think I get some if how you feel

August 30, 2015 - 5:34am
EmpowHER Guest

I was with a woman that was very sick right after I met her for about a year. It's a long story but she is an amazing woman but the constant seizures, hospitals and pain she suffered was our relationship. She lost everything. I gave everything but it killed the normal meeting someone and getting to know them phase. It ended as I pulled away as I promised not to get 'hurt'. So I closed off not really knowing I was doing it. I can tell you one thing. If you love them, If they are beautiful inside, if they make you laugh and feel loved then don't close off. Share the experience with them and love them. What a mistake I made. I will regret for my whole life. This post is purposefully vague. God I miss her. I wish we could of got to know each other for a half a year before that happened. I would of been more prepared. Good thing is she's alive. I think of that every day and still pray for her. I can only imagine how she feels. I am so happy she is alive and well somewhere on earth now. I Miss you.

August 24, 2015 - 7:07pm
EmpowHER Guest

I totally understand it can not be easy taking care of a sick spouse. But what I find the strangest is all the comments of the non-sick spouses and their self pity. "Poor me, my husband/wife is living in pain/disabled/dying and I'm not getting any attention from him/her, not even sex, I don't feel loved anymore" etc. etc. Maybe trying to other standing what your spouse is going trough and talking to your spouse about what you as caretaker are going trough will get you far. But stop making it about for you. You're are not the one sick. Maybe try to understand and be understood. Because trust me, your sick spouse knows when you don't sympathize. They have to deal with sickness and with a unsympathetic spouse at the same time. I wonder if you could pull that off. So stop making someone else's sickness all about you. Sympathize and be honest and you'll hopefully get the same in return. But please just for a while stop making it about you.

August 19, 2015 - 4:29am
EmpowHER Guest
Anonymous (reply to Anonymous)

Spoken exactly like someone who hasn't walked in my shoes. Self-pity, not me. But seriously, once your spouse is ill, if it weren't for self-pity, there probabl y wouldn't be any concern for the caregiver otherwise. Ever spend holiday after holiday being asked how your spous is? And not once does anyone ask how YOU are? You, the only one working for $, the only one caring for your spouse, the only one caring for 3 kids, the home? No, I don't think you know what this is like. And on top of many of our stories, we aren't caring for a sweet, cooperative spouse who is appreciative. The common thread you seem to be missing is that the categiver is a person with needs, too; and just because our spouse has hit some poor luck doesn't mean our needs aren't important too. I think you are looking at this from only the ill's perspective. I see your view, and it comes from the cheap seats.

August 19, 2015 - 4:54am
EmpowHER Guest
Anonymous (reply to Anonymous)

Kind of just sounds like being a mom.

August 25, 2015 - 2:53pm
EmpowHER Guest

I'm happy to have read this too. Obviously not happy to hear other people going through problems but happy to hear that I'm not alone.
My wife was diagnosed with MS 11 years ago and we have been married for 10. She was a vivacious, fun loving young lady who was working as criminal barrister at the time and loving life in London. Five years ago our beautiful daughter was born and this coincided with a rapid decline in my wifes mobility, the onset of incontinence and other nasty symptoms. Trying to juggle all this as we adjusted to becoming parents was a challenge to say the least. The element which rendered the situation nigh on impossible was my wifes challenging behaviour. She has become extremely cantankerous and negative towards those closest to her (including our daughter). She refuses to take part in any meaningful exercise, diet and takes no responsibility for household chores, finances and even her own personal hygiene. We have not had marital relations in years now. I feel like our only connection is our daughter and that the only reason I am still there is that I feel that if I leave she will lose everything (she lost her ability to work around 5 years ago due to lack of mobility). Sometimes I day dream about leaving and the new MS free life I could lead. However for the time being I'll dig deep and hope that things improve.

August 12, 2015 - 9:03am

I have spent days packing up my share of our marriage. I also got him the bits I'm taking but that he will need - and then I stopped and thought why am I doing this? Caring for him is ingrained. I try very hard not to cry. I must keep focused on packing and trying to find a home for me, my pets and my 80yr old mum. When I am settled I can look at my broken heart.
I realise now that while I have lost him, he has lost himself. He said to me people dont seem to care - oh if he could hear what they are saying to me. He belongs to a service group - most of them know and they are disgusted with him. Our doctor, who is also a friend, called him a b@#&*#! and said it was the best thing for me. A very close friend said he was a disgrace. They all raise our vows.
My husband doesn't have to look after me. He just watches me get hurt. This is all about sex and my drug induced weight gain revolts him. He told me hes not even interested in me, with a look of revulsion on his face.
I feel destroyed inside. I will not love again.

August 5, 2015 - 1:17am
EmpowHER Guest
Anonymous (reply to kiwitoo)

15 years with a 100 % disabled Vet. All he does is set and watch tv I talk and all I get is huh? Saleing my home of 19 years to move into a home handicapped ready for him. I know where your at in you heart and mind.

August 8, 2015 - 7:09am
EmpowHER Guest

Dear what kind of woman. I am faced with EXACTLY the same situation. The only difference being that we are not legally married. My partner was diagnosed with PPMS about eight months after we met. I decided to plough ahead against the advice of family and friends. At the time of my decision, I was sure it was the right one. Most days I feel it still is. With primary progressive as you probably know the course if the disease can be aggressive and unpredictable. He will most likely be wheelchair bound within months. He has deteriorated considerably but his mental state remains for the most part fairly positive. So far the bad mental state days are few and far between. Once in awhile he will look to pick a fight because he is frustrated. Always by his limitations. What advice to give you? I can't because I haven't figured it out in my own life. However as mentioned by another poster, be kind to yourself and take care of yourself. You are clearly patient and kind to him but unfortunately he is unable to reciprocate. I would say this to you. If you begin to forget what it means to be happy. If you cry more now than laugh or smile, then it may be time to rethink your life. I personally know that this is not an easy thing to think about. I know!
Whatever you decide to do, you will have supporters as well as critics. Be deaf to the critics. Unless they have walked a mile in your shoes, they do not know your life. Sending you lots and lots of love. Elizabeth.

August 4, 2015 - 4:52pm
EmpowHER Guest

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
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