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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

My husband has abandon me and the kids for the the past 8months now, and refuse to come back because he was hold on by a woman whom he just met, for that, my self and the kids has been suffering and it has been heel of a struggle, but I decide to do all means to make sure that my family come together as it use to, then I went online there I saw so many good talk about this spell caster whose email is LAVENDERLOVESPELL@YAHOO.COM so I had to contact him and in just 4days as he has promised, my husband came home and his behavior was back to the man I got married to.I cant thank the spell caster enough what what he did for me, I am so grateful. I even spoke to the spell caster over the phone, to confirm his existence. His email again is: LAVENDERLOVESPELL@YAHOO.COM

July 25, 2017 - 7:39pm
EmpowHER Guest
Anonymous

I have been married to him for 48 years. I was raised in the era of being a "good girl". ...a pleaser. Don't make waves and keep your mouth shut about things that bother you. Two children who were damaged by his emotional abuse of them and me. The guilt I carry is crushing. But I did love aspects of him. He could be kind and generous. Anyway, I stayed. Felt that it was my karma and he was my true teacher of patient forbearance. And I had made vows. Anyway, he was diagnosed with type 2 diabetes. Not so bad...take care of yourself, eat right, exercise. He did all that and then stopped. Wouldn't take medication or eventually insulin. No one was going to dictate to him how to live. Heart attack, pacemaker, great toe amputation, sepsis. Peripheral neuropathy so severe he is crying with the pain as it plagues him for days. Walking with a cane as he cannot feel his feet. He is 68 and looks 78. Oh and no sex life due to Peronies disease...deformed penis...diagnosis 10 years ago. The way he ended our sex life still infuriates me.
Oh it gets worse. Me quitting a job I loved to care for our 39 year old son with mental health issues. Moving to another town in which I own a home to do so because my husband doesn't want to deal with said son. Then we decide we need to sell the house we have lived in for 40 years which he has filled with hoarded things...paper, tools, old computers, office equipment, building supplies...etc. And he wants to take his time to touch each item and weigh whether he can give it up because he may need it some day. A year later and the house is still jammed with his stuff and he is so ill and weak he can't do the work. But, by god, no one else is going to touch his stuff and make any decisions for him. I am back in this hell hole after living for a year in the home I own in another town, to care for my husband through another illness. He is angry most of the time and says he feels justified because he is ill. I am nearly empty...I do not know how much more I can do. I am only 67 and want so much to have a real life. I feel bereft that I have no compassion for him any longer and no love. I feel only obligation. I am currently healthy but feel my mental and physical health are collapsing. What to do?

July 16, 2017 - 10:14pm
EmpowHER Guest
Anonymous

This is a very tough subject I wish I did not know. MS sucks. I hate it and am sorry for those suffering from it or any health issue. I am a nurse (love it) and come home to a very sick man who does not much but grocery shop gamble. Then demands sex. I am not feeling it. I am getting out. Why? Simple.....I am not happy and life is short and its my life

July 16, 2017 - 8:57pm
EmpowHER Guest
Anonymous

My husband who is 59 years was diagnosed with PPMS about a year and a half year ago.His mother also had it. He is starting to have problems with his legs. It is heartbreaking for the both of us . But the worst thing r the mood swings. He can be very verbally abusive and then doesn't seem to realize it . When he does he always says that he is sorry. Is this unusual?

July 11, 2017 - 6:50pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Hello
Yes , my husband has total moods swings.
I don't know what I am going to come home too.
I don't think it is normal. I keep telling him to get some help but no, I'm the one with the issue and of course it's the kids fault because they don't listen, is his excuse. How much are we meant to take??
I feel like I'm letting my kids down and it's breaking my heart. Do you kick out your sick husband who is turning our whole life into misery just because he has a chronic illness? How did s it our fault? I'm so worried out 3 kids are going to be scared for life.
At the same time this man scares me when he is at his worst. When he is happy, he is so different. Totally split personality or biopoler but don't even think of mentioning he has a problem, all hell would break loose. And I just sit there and take his crap waiting for him to calm down... I'm so over it.
If anyway says how can you leave a sick spouse, they obviously have not lived with a loose cannon.
It's either leave and live or stay and be miserable and die from stress. Which I probably will...
Good luck to all you lovely people going through issues like myself. Take care

July 19, 2017 - 2:11am
EmpowHER Guest
Anonymous

This is a response to the " 37 year old lady, highly educated and healthy" upon which this post was started. I found your story very moving and relate completely to your situation. To consider leaving a chronically Ill partner is a terrible position to be put in. I am also 37 and have been with my partner for 13 years. He's been sick for the last 10 with multiple different illnesses, ranging from cluster migraines, chronic depression, testicular cancer, chronic intestinal and abdominal damage due to operations, cancer of the kidney, removal of said kidney and just yesterday he received the diagnosis of bladder cancer. He's 51 years old. To say he's been through it, is putting it mildly. I was 26 years old when he got the first bout of cancer. My life has been put on hold, it feels, numerous times. But I was willing to do it cause I loved him. But this time I just can't seem to deal with it. I keep imagining how the new treatments are going to lessen his already depleting life quality. All I can think about is leaving. I know that that's a totally normal reaction to have. But it still seems unimaginable to leave someone you love. How can you know if your relationship is longer working, when chronic illnesses bring relationship problems and advice to a whole other level. Even most therapists would have a hard job helping you through it. I still would recommend one though. They are definitely a good sounding board for your thoughts, worries, fears and doubts. In the end they have your interests at heart, which is what really matters. That's right, YOU matter. YOU are worth it. That would me my only advice. It's easy to forget your place when illnesses take over your partners life. In the end, it's also your life. What evvironment do you want and need. When you answer that question, then the next step, is to go get it. Whether that means leaving or staying. i hope this helps you.

May 31, 2017 - 11:58am

Hello everyone!
I am glad I have found this site.
I read most of the comments here.
My situation is a bit different. I have married from the beginning with a cancer survivor, who was in the end of his oncology treatment and also he is not living in is own country, he came to my country for the treatment.
I met him, fell in love with him chased him basically and he continuously warned me that it is going to be really hard living with a sick man. The final stage of his treatment is to do a surgery so he can walk properly, I actually married to help him to do a surgery because he can do it for free in my country.
I know he loves me I feel it and he shows it to me. In the mean time we are waiting for his surgery , every day his situation gets worse. When he takes painkillers he is calm. But he always uplifts the dosage and sometime he does a break from them and when he does he is angry all the time , he tries no to show it, but when I say something he doesn't like he think I criticizes him or wants sm from him and he loses control and goes crazy, when he goes crazy I also start to yell and become hysterical, sometimes he says sm to me like that I am not doing nothing for him and just live my own life and I start to go crazy because it really hurts for me, I am trying my best to overcome myself and to be there for him. He constantly says I am not capable to live with a sick man and I am not patient enough. It has come to the point we fought once, he went crazy on the road, once he broke furniture in the house, and once I was hysterical and he was a bit violent to me he didn't hit me but he grabbed me really hard I felt pain, I thought he is going to hurt me but then he let go. He felt really bad about it so he left back to his country for a while said he lost all control .
every time we fight I am telling him I am leaving him but in the end I understand how much I love him and we make up. I also lost my temper a few times and it was my fault from the begin with, but since his situation got worse we fight more and more, I also don't have sm to compare to, I don't know how he was before.
I feel I can bare everything except when he is angry and mad at the world and at me for nothing, my instant reaction to that is protection and I am starting to be mad also. another problem he is drinking a lot, he does nothing all day and he says that the alcohol ease his pain and helps him forget his situation, he drinks only when he doesn't take painkillers.Also he waits for the operation and we don't know when it is going to be , it can take even a year until then (because of some bureaucracy problems). It means he has no sight when his pain is going to stop. sometimes I feel maybe he take things out of proportions' because I know his situation is much better then it could have been, he bit cancer and now he is waiting for a surgery to help him improve life quality. I know I chose this and to live with him but I am loosing my powers. I know if I'll leave him I'll fell I am leaving a man in distress and in pain when he needs me the most and of course I love him so much I would miss him every day, I know he is a good man.
His situation is really complex, he is not on his own country, depends on his family to support him with money (cause I can't support us both), waiting for surgery that we don't know when it is going to be, he constantly feels he can't give me what I need and he feels bad about it. He always says to me why I need that and I should go and find a healthy man and have a bright future.
I don't know how to be more patient and to build a wall not to react to him when he is angry

May 29, 2017 - 7:25am
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
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