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Q:
Living with and possibly leaving a sick spouse - a heartfelt story from a reader looking for advice
By
Michelle King Robson
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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If anyone in the UK is reading this and in a similar situation, would you consider taking part in my doctoral research? [email protected]. I'm a counselling psychologist in training and passionate about getting these stories heard.
July 5, 2014 - 12:49pmThis Comment
My boyfriend recently found out he has MS. He's been pushing me away ever since and I'm not sure what I should do. I don't want to stress him out any more than he is. I couldn't imagine what he is going thru, I just want to find happiness with him again. I don't know if that means letting him go to figure himself out and just hopping he finds his way back . Or fighting for us even if he's pushing away...
July 1, 2014 - 9:17pmThis Comment
Let him go for awhile and let him figure it out. MS is scary at first and takes awhile to come to terms with. My Ex left me over my MS and it was my wake up call. Im now healthier , happier and learned to deal with it. I think if your not happy get out . If he figures it out soon enough and you figure it out and your truly meant to be then it will all work out. If not then it was not meant to be. MS is not a death sentence or most of the time even all that disabling ( unless )you give into it and not fight. Ask your self what he would do if the tables where turned .
September 14, 2014 - 3:03pmThis Comment
Oh wow! I felt like all of you were speaking to me. I am 41, he is 43. He has congestive heart failure and a few other issues. He is now wearing a Life Vest because he is at risk for SDA or sudden cardiac arrest. I have been with him for 7 years. I love him, but I too am tired of not being loved back. I work and he stays home with our daughters, ages 3 and 13. I work hard and I am always tired when I get home. He doesn't seem to care about that lately. We live in a hotel and don't have a car. All things changed when he got really sick. We lost EVERYTHING! I am trying to get us back to where we were but he is constantly depressed that he cant work, always tired from the kids and never has time to just sit down and talk to me. I just got home an hour or so ago and he is on the couch asleep. I told him tonight it would be nice to spend some time with him when I get home, he said, I know baby, then went to sleep. I feel so alone. I want to leave, but I know that I am all that he has. I know that is not a reason to stay, but what else can I do? He too was vibrant and fun loving and then somewhere along the way all that left! I am sick and tired. I went through this with my first husband, I left him when he got better because all of the things he used to appreciate, he started taking for granted when he got better. He died 6 years after we divorced. I think I am afraid of the same thing happening. I understand you pain and if I knew the magic answer to fix all this I would definitely share. Much love to you in whatever you decide to do. I just found this page because I am in one of those moods tonight. I am a young 41, I love laughing and having a good time. Almost everyone that is close to me has noticed that I don't have that anymore. This stuff hurts. So many people don't see that the caregiver sometimes needs caring for! Thanks for letting me vent, and be blessed!!
June 19, 2014 - 9:14pmThis Comment
Hi To cut a long story short. .I thought I was reading about me. .your story is my story except I left and it was the saddest ,hardest thing I have had to do. .23y of marriage 2 beautiful boys but we had to leave because my husband's M.S was destroying our whole family. Today I am happy my kids are happy but my ex still lives a life of selfpitty and nothing has changed he won't help himself lives a life of pitty. The why me life. I know it must be very hard to except and yes you grieve your loss of your
June 13, 2014 - 1:02pmLife that once was but at some point you have to say ok I have M.S and I'm going to live and make the most with my family. my husband never did he and still to this day he is not wanting to even try to help himself.
So yes it was the saddest thing I ever did but I'm soo glad I had the curriage to leave. After 23y of hoping he would one day say ok I have M.S and I'm going to live and do the best I can!! It never came. I think if I had stayed my children would of suffered. .they were 14 and 19, today they are happt, eldest one is married and I have a grandson and my youngest lives with me. I'm alone but I'm happy. I left 8 years ago and I look back and think how did I leave. ..
This Comment
Hi.
I am a 29 year old female and have been going out with a 30 year old male for seven years. We were engaged to be married next year, spent the last three years restoring this old house we had bought, making plans for our future and basically just living and loving life, with all its ups and downs. February of this year, my fiance was diagnosed with Multiple Sclerosis, which was a shock to us all as prior to the attack leading to the diagnosis, my fiance was a strong, healthy man who trained 5 times a week and showed absolutely no symptoms of the disease. The diagnosis has sent me into whirlpool of emotions - anger, denial, mourning. The first month and a half I never left his side, however, when I began to better understand the implications of this disease, I began to fear for the future and started having mini panick attacks where I felt just soo overwhelmed. I have seen psychologists, psychiatrists, a priest and his own neurologists privately. I'm trying to do everything I can to overcome m fear of the future, but I am afraid I just won't be able to. I love this man deeply, and leaving would be the most difficult thing to do. I would appreciate advice from anyone who has been in the same situation.
June 10, 2014 - 12:49amThis Comment
Hi, your situation resonates mine. I met my husband when I was 29 years old and he was 35. It wasn't love at first sight - he seemed a safe bet as I had met some nasty men prior to meeting him and thought he was the best of a bad lot. I was lonely. We planned to marry when I was 30 and he was diagnosed with MS 6 months before our wedding. Like you, I was devastated and didn't leave his side at first. I had huge doubts before the wedding and thought I shouldn't marry him as I didn't love him enough to marry him, let alone someone with such a horrible illness. I did tell him how I felt at the time and his response was that he had enough love for the both of us. We have now been married for nearly 15 years and have a 14 year old daughter. We are lucky in that my husband's symptoms are hidden (slight limp, optic neurosis), however, he has become someone I do not recognise. He used to be positive, occasionally funny, outgoing and decent. I can't say I regret marrying as I would not have my daughter, however, my advice to you would be to seriously consider marrying unless you know in your heart of hearts that you love him 100%. MS is a terrible disease - the personality change is just one symptom to deal with. My husband has become extremely jealous, possessive and nasty. I get that he's frustrated that he can't play golf like he used to or drink with the boys like he used to, however, I feel like he is drowning and he is dragging me down with him as he is trying to stay afloat. He doesn't seem to care about this when I try to discuss it. He comes across as very selfish but maybe he was always like this and MS makes this come out more? Meanwhile my daughter is having counselling treatment and she too thinks she has MS. She is extremely affected by the illness and has said that we were both very irresponsible in bringing her into the world knowing one of us had MS. I hope you look deeply into your to see whether you have the resilience, strength and love to deal with this illness as it's no easy feat. Hopefully, things will work out for you.
February 4, 2015 - 2:25pmThis Comment
I was with my partner for 12 years. We met when I was 19 and he was 22. He was a normal, healthy, strong man who was my best friend. We had our ups and downs but we were happy and madly in love and ended up having a child together. Life was good until he began to lie and steal from my friends and family and even his own family. He never cheated on me and never would have, he loved me with all of his heart and I loved him but found myself losing respect for him and falling out of love with him due to all of the lies. I wanted to leave at this point but he ended up falling ill and was diagnosed with coeliac and then pulmonary embolisms. He couldn't work so I ended up supporting the three of us but the lies continued, not only that but our sex life was non existent (it had never been that great). A few years went by and he had surgery to remove most of his small bowel (it had been damaged by blood clots restricting his blood flow) and seemed to be on the mend, he was also awaiting surgery to remove the clotted tissue from both lungs. I left him a few months before that happened (I had left him a few times in recent years but always went back because he was ill and I felt guilty for leaving. After all, I loved him, I just wasn't "in love" with him. I was his whole world and he reminded me of that constantly). I met someone soon after we separated and he couldn't come to terms with it. 3 months after I left he passed away, leaving our 8yo daughter without her beloved father. I often ask myself if he'd still be here if I hadn't left but I think it was just his time. I think you need to ask yourself if you could live with yourself if this happened to you. My life is a daily struggle and I have so much guilt for not being there for him, even though I was unhappy and wanted to leave before he became sick.
June 7, 2014 - 9:28amThis Comment
Thank you so much for writing this. I just left my fiancee of 5 years in April and it was the hardest thing I have ever had to do. We were on the verge if a break up 1.5 years ago as I was sick and tired of deception and just really wasn't in love with him like once had been. He was a "decent" father a "decent" partner but everything was about him all the time, he never did anything with me (without pulling teeth) and it got old fast. The reason I stayed with him was bc we had a young child together and I was mostly comfortable even though I was not happy. Then at that time right after Christmas he was diagnosed with stage 3 testicular cancer that had spread throughout his abdomen. This in some ways brought us closer together and in other ways ripped us apart. I stayed by his side through 31 chemo treatments, multiple long hospital admissions and surgeries while I worked full time as the only income, finished my undergrad and cared for him and our 2 y/o at the time. He seemed to make his way to recovery and I started to notice that he really was not trying to help himself- he didnt take his meds properly, he barely moved from the couch(part was depression), he was abusing his prescriptions, smoking weed all day(pissed me off), went back to smoking cigs, I would go days without even talking to him and he not talking to his son, he was mean and I felt unloved and used and it got so frustrating and I was getting more and more angry as the days went on and it was effecting my parenting and life . I told him I was leaving him. He didn't seem upset by this. I waited nearly 1 month for some reaction some plead, anything and I got NOTHING. So I took our son and left him.I told him I wanted him to get help I would go to counseling with him as a family to try and save our relationship. Not a day goes by I do not cry bc im not there to care for him. But I know this is for the better for me. He has not made contact with his son in 2.5 months and i'm very afraid he is going to die and I am not going to be able to live with myself. I'm so angry at him for ignoring his child that it turns my insides and makes me want to explode. It is a terrible thing to live with I just do not know what do to. I have tried to reach out and have gotten nothing and I hurt so bad for my son as he doesn't even ask about him anymore. He has set up outpatient counseling services and drug services I just hope he sticks with it and can be a part of our child's life as he has been given a second chance at life. Thank you for posting, just knowing someone else has experienced something similar makes me feel a little better. I, just as you wanted to leave before the illness struck but things didn't work that way and I guess we will have to live with it.
June 8, 2014 - 6:47pmThis Comment
Thankyou for your reply. I was unhappy for such a long time and I stayed because he needed me, he knew this, he knew we were unhappy yet he was ok to live like that and to this day, I don't understand why. Leaving was the hardest decision I've ever had to make and I feel for you and anyone else in the same situation. I didn't think that my ex was going to die. I thought he'd have the surgery and he'd be ok, we'd be friends and my daughter would see him often. I thought all would be ok once everything to do with the breakup had blown over. We never really had that chance. He didn't speak to my daughter for weeks leading up to his death because she reminded him of me and he told me he didn't want to life without me.. he wanted to die. I believed for a long time that he may have taken his own life but thankfully his death certificate proves otherwise. I guess everything happens for a reason. In a way I'm thankful that he distanced himself from our daughter as it wasn't such a sudden loss for her when he passed, although I'm not sure anything could have made it any easier for her. She loves him so much and it breaks my heart that he's not around. My only suggestion is for you to be patient and hope he decides to be involved in his sons life. Maybe he doesn't want to be in anyone's life if he believes he's just going to die anyway? Perhaps he believes he is doing you a favour by not being there for either of you.
June 13, 2014 - 4:55pmThis Comment