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

By 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
Anonymous

Hi there,
I totally know where your coming from here with your husbands illness. My husband developed MS over 12 years ago. At the time we felt that we could survive anything as our marriage was rock solid. Through the years his illness started to take its toll with both myself and our children. Unfortunately this year our marriage broke down and we now live totally apart. I suppose i changed and my husband changed as sickness brought so many rough areas in our lives that we couldn't break through. I got tired of all the negative reactions that my husband developed and he felt that i didn't care enough. To be very honest i had enough of his irrational behaviour towards me and the world in general. I tried to put the shoe on the other foot so many times but after a while pity and concern stopped and a wanting of freedom from all this dismal stuff that we were both going through.
Since i have moved away i feel a huge burden has been lifted and i know that this is selfish on my part but through the years of suffering i now just want a life where i can start laughing again and bring some light back into my life.
Everyone is good good at judging you but when something like sickness comes into your home it brings with it heartache and a turbulence that sometimes you just cant take. I guess we just ran out of energy.

May 14, 2017 - 12:51pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Hi There,I'm in the same position as you,My husband became wheelchair bound nearly 9yrs ago from a condition that he got which affected his nervous system.I have been unhappy for probably 8yrs and have stayed for our kids sake.But his negativity and no communication and feeling sorry for himself I am worn out.He did go to uni for 5yrs but when he finished I said you need to get a job(help me provide for the kids...I can only work part-time due to my pension)His reply to that was who would hire me??This made me furious...I would of called it then but I was taking my daughter overseas in few months so i let it go....He is disabled he is not dead....Then when we returned from our trip I was telling him what a fantastic time we had and all he could say was Arn't you lucky!!I was on such a high...but he made me feel like crap...whenever i get happy he manages to bring me down...so my mental health is now suffering.He is definitely depressed,but i am not responsible for his happiness...I am responsible for my happiness so this week I will be telling him i want a separation...I'm worried about my kids,They won't understand and I worry they will hate me.But I want to be a happy mum and not depressed a one!

May 27, 2017 - 5:05am
EmpowHER Guest
Anonymous

Wow...all of this is really making me think....I am the one that is sick. Ive been on dialysis for a few years now and I think it has finally caused thw end of my marriage. I try not to become her patient and I do everything dialysis related myself. She is supposed to be my caregiver on paper but doesnt even know how to turn on the machine. I treat here at home. Anyways one of the forst things to go is the male libido.and I guess she has had enough. I feel guilty hurt and mad all at the same time. The thing that gets me so mad is I honestly try to put her 1st all the time...and we are very intimate...just not sexually. We always hold hands.... do things together.....but sex is a challenge for me...part mental...part physical...maybe I just need to stop chasing her and help her pack

April 12, 2017 - 9:11am
EmpowHER Guest
Anonymous

I just found out that my fiancé of a year might have MS. I am terrified. He is not handling it well, as he is the breadwinner in our relationship, and we are not in a great financial place if he's unable to work. I have just gone back to school and we will have to re-do a lot of plans. I am okay with all of that, but he is not the most positive person to begin with, and this has been like a thread unraveling him. I don't know if I'm strong enough to handle this, if he can't try to be positive or proactive, like I'm trying to be. I feel helpless.

April 6, 2017 - 8:10pm
EmpowHER Guest
Anonymous

My husband has MS and I have been caring for him for the past 2 years full time. I feel guilty just thinking off leaving for a day. I kinda forced him to let me take a yearly trip to have some time for myself for a few weeks. Suddenly this year he shot it down when I told him about my holiday plan. I am reluctant to bring it up again. I get his point of view obviously. Am I selfish for wanting to take a break a few weeks once a year????

March 24, 2017 - 5:54pm
EmpowHER Guest
Anonymous (reply to Anonymous)

No, you are not selfish for taking a break once a year. My husband has MS and I take a break every year. This year he was grumpy about it. So I asked him what was going on. It turned out it was summertime. because of the problems he has with warm weather wasn't a good time to move him to a caring home without airco (the Netherlands by the way). So we found the middle ground in me not traveling in the summertime. But if it was a bs reason I would have held my ground. You know why? Well, you need some time off once in a while. You need to relax, eat, and drink when you want to do it for a change. Hold your ground! You deserve it! PS traveling Italy for 3 weeks in September. :D

May 23, 2017 - 5:58pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Hi,

You are sooo not selfish for wanting to take a break and I really don't think under the circumstances he has any say in the matter. Being a caregiver to a mentally ill spouse for the 8 years we've been together, I've actually sent my guy on vacation for 2 weeks to get away from me because I wanted the house to myself, not to just get a break from him. I'd have divorced him years ago if he hadn't given me space. He's in relapse currently and it's starting all over again but this time he isn't just sick - he is so cruel to me - and it sounds like your guy telling you you can't go is on par with that total lack of care for your well being. I say this with all the light and love in my heart: HONEY, take that trip and tell him if he wants you to come back he won't say another word about it. I have tried everything in my own relationship. If you give in to him, you will lose yourself for good and he will always expect you to give in. Don't be co-dependent like I've been just to prevent his hurt feelings. You NEED this and you have feelings too.

May 5, 2017 - 2:09pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Im with a man who is my hubby, that has never treated me properly, never wanted to spend time with me unless it suits him, I had to fit into his life, he never wanted to be apart of my life. He is full blown narcissistic. Now he is sick stage 4 colorectal cancer, doing it all naturally, no chemo, no radiation, no pain meds, no surgery. 2 1/2 yrs diagnose.
It just doesn't feel worth it anymore staying, he's so selfish, it's like I can leave the house for errands but god forbid I go out with friends, forget about a vacation, which is what the boys and I need desperately.
I told him once that "yes, you have the illness but your not the only one going through this", his comment was, "yah sure okay, you take these pills, you be in the bathroom constantly". I'm so worried about the boys, ages 18 & 12, and how this will affect them in the long run.
The nurses that come to the house know the situation with him, and know that I'm tired and done with him.
I know this makes me out to be selfish, but he wouldn't even do a quarter of what I do for him, in being a caregiver. He has shown me in the past that I'm not important enough to him. I was so sick years ago, couldn't get out of bed, fevering, had a super badass cold, but he still wen away for the weekend. Didn't bother to see if we needed groceries or anything. I had to get my elderly parents to come to my town to pick up my debit card anf go grocery shopping for the boys and I.
Another time was when I fainted with my friends, they called him left him msgs and nothing, when I finally got home, he wasn't there, hours later he shows up, as if nothing was happened, came back home to get his workout clothes and then left again.
I'm cleaning up after him, when he shits himself, or has explosive poops in the bathroom, or in the hallway, and all sorts of other stuff that a caregiver does.
I just want to come out this okay, and still have have my sanity. I truly don't know how long I can keep doing this for him, he is so snarky and arguementive.

April 30, 2017 - 6:02am
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear one,
I, too, was a caregiver for eight years until my significant other died. The man I took care of was charming, manipulative, extremely ill needing a liver transplant, and regularly devalued me only to try to make it up later. I loved him dearly but his cyclical poor treatment of me was terrifying at times and other times just degrading while it was I who worked days and cared for him at night. Please, please find the Well Spouse website for caregivers WHO ARE SPOUSES, because it is much harder to care for one's spouse or significant other for a whole lot of reasons. Take a good, long look at the rights for caregivers, and look at them OFTEN. Those people who would criticize you for standing up for yourself no doubt could not do what you are doing every day. They need to shut their mouth or start doing the heavy lifting. You have EVERY RIGHT for respite care, even if (and especially if!) he tries to ruin or derail it. Caregivers' lives matter too.

April 14, 2017 - 8:45pm
EmpowHER Guest
Anonymous

My husband hurt his knee on the job a year ago 2/16. A month later had a small stroke. He is 73 and I'm about to turn 30. We have been together a total of 6 years and have been married 2. We always fought from the begging . Terrible verbal abuse. I never knew what person I would wake up to each morning. There were happy times. That's why I fell in love with him. He was kind, gentle, affectionate, emotional, responsible, great in the sack... But he's a controlling person. SO, after this recent injury, he has gone down hill so much that I don't even recognize the person he once was. He has withdrawn himself from me. We argue over stupid things. The arguments get so heated that he will always bring up divorce. Ughhh, I have been through so much with this man and for him to treat me the way he does is just unfathomable to me. I want to care for him. I want him to be happy. Not depressed all the time. But we always end up fighting. And it's gotten worse since his health has started to deteriorate and he can't do the things he once could. I feel emotionless inside. I don't know how to get that feeling back. I love him with my whole heart. I care deeply for this man. And yet he will not let me in. He will not communicate with me. I feel helpless. And all the prior years of emotional abuse have taken its toll . I don't know what to do. He has no family that truly cares for him. I am the only one. I don't want to live my life this way forever. I am way too young to feel this way. My heart breaks everyday. What to do?

February 15, 2017 - 8:20pm
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