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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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Anonymous (reply to Anonymous)

I can't believe how similar our stories are. My husband has been on the transplant list for a year now. He doesn't really have many symptoms. he actually works full time plus. The problem is that his sexual desire has been gone for many years now and he also has mood swings. I sometimes don't know who is going to be on the phone or sitting on the couch... they guy who is sweet and cares or a complete jerk! I wonder sometimes if his kidneys are causing these issues but his family has similar personalities as well. as far as his sexual desire goes... well that is just painful- he doesn't touch me, but he does watch porn on occasion. I feel neglected, rejected, and walking on egg shells but how do I leave a guy who is about to face dialysis and possible kidney failure! I frequently want to leave but then he's sweet again and it makes it difficult. I don't know what to do.

January 25, 2016 - 7:59pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I can't believe how similar our stories are. My husband has been on the transplant list for a year now. He doesn't really have many symptoms. he actually works full time plus. The problem is that his sexual desire has been gone for many years now and he also has mood swings. I sometimes don't know who is going to be on the phone or sitting on the couch... they guy who is sweet and cares or a complete jerk! I wonder sometimes if his kidneys are causing these issues but his family has similar personalities as well. as far as his sexual desire goes... well that is just painful- he doesn't touch me, but he does watch porn on occasion. I feel neglected, rejected, and walking on egg shells but how do I leave a guy who is about to face dialysis and possible kidney failure! I frequently want to leave but then he's sweet again and it makes it difficult. I don't know what to do.

January 25, 2016 - 7:59pm
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
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
EmpowHER Guest
Anonymous

My husband and I have been together 26 years. He was diagnosed with TIA and has found multiple blockages through out his bodies as well as 100% in his right neck. His attitude is horrible . Can't work (I understand he was a great provider) has put a lock on (what was our ) bedroom door. He is always angry and when he does say anything to me (never) it's so hateful. He refuses to help with car repairs, or groceries,( collects s.s.and retirement check) will not eat anything I cook, or wash his clothes. Some have heard some pretty nasty things he says of me(did I mention no intimate contact in 3 years) . He seems to work hard at professing "I don't want you or love you anymore" I'm so torn and at 54 , I'm scared. He promised FOREVER. I am depressed, crying , lonely (I really just need talking, acknowledgement,watching tv....all the things we were about. Trust me the sex thing I understand, I could love him even without it) I am ready to give up. I leave, it's just me, scared to attempt this again. I do love the man he once was. All the years of drinking and this illness may be the end. In more ways

June 13, 2015 - 1:17am
EmpowHER Guest
Anonymous

When I married my husband 27 years ago he was healthy. He had MS for about 10 years. I love my husband even if he has MS or any other illness. My husband cheated on me early in our marrige, I didn't find out about it unil 20 years later, I forgave him and stayed married to him. For the past few years my husbands mood has changed drastically, he is very abusive towards me. He had physically abused me a couple of times and he repeatedly verbally abuses me. I feel as though I am constantly walking on eggshells trying to be careful of what I say or do around him, I know it is his MS making him this way so I try to not blow up at him but today I did, I couldn't help myself, I wanted to hurt him verbally like he hurt me, which I know is wrong. I don't know what to do anymore. He gets angry with me it seems for breathing to loud. I love him and don't want to leave him but I don't want to be called a whore at the top of his lungs, shouting outside in front of everyone that I am a bitch...it's very embarrassing for me. I also don't like being kicked in the stomach or choked almost to death. I wish someone would tell me how to stop this madness, I want the man I married back. Any advice would be appreciated.

May 29, 2015 - 12:12pm
(reply to Anonymous)

Next time he hits you call the police and have him charged with assault. You are his WIFE not a punching bag and his illness is not an excuse to hit you, scream abuse at you and make your life a misery. If he won't get help like anger management and counseling- leave him. Look at yourself in the mirror and say I DESERVE BETTER THAN THIS. Say it till you believe it. God bless love x

May 30, 2015 - 1:29am
EmpowHER Guest
Anonymous

I'm a married young women with MS and I hate feeling like I'm a burden on my husband. Every time a new illness pops up I ask him if he wants to leave (hoping the answer will always be NO). Some times we don't think about the pain that's in our body or really worry about what may break next... we worry about being alone. The reality of being diagnosed with a incurable disease his terrible BUT being diagnose and having to wonder if your loved ones are going to leave is worse. As a female I would go to counseling if my husband felt I needed it, but that's not always that simple for men whether their sick or health for that matter. Maybe you can find a counselor that's willing to come to your house for a "dinner party". Vows are important and should be honored BUT it does take two. Let your husband know how you feel and be honest. Don't sugar coated it keep it real. You can also do a trial separation. If you have family that you can stay with, go there for a while and let him see how much you're really doing for him. It sounds like he's taking you for granted and nothing makes the heart grow stronger than distance. Don't come back home until he goes to counseling and starts making changes. HE has to appreciate the marriage just as much as you if not more. Don't take this the wrong way but please don't talk with other men or go out and party during this time, because it will pull you towards divorce. Work on you! Take some caregivers classes or link up with other caregivers. Go out and relax with female friends that support your marriage and want to help you stay strong. You need and deserve a break and there's nothing wrong with getting it. Truthfully that's the only way to make it work. Once you guys get back on the right track schedule a mini vacation for yourself at least once a year. You're healthy now but your life could always change so enjoy yourself whenever you get a moment.

May 21, 2015 - 2:07pm
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