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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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I need to leave a man that I love very much, to save my own life! I don't know what to do about it but I can share what has helped me!
Last year, I suffered a major depressive episode that almost took my life. During that time I discovered a book that was a HUGE help to me. I recommend it to each and every one of you. It is called 'Co-dependent No More'. by Melody Beattie. It was written years ago, but is very relevant to our situations.
Here is my story.... My husband and I are both in our second marriage, and have been for almost 20 years. About 10 years ago, he began having serious back pain and was put on prescription narcotics. That is when everything turned. Over the past decade, his health issues have become overwhelming. He has had 2 back surgeries, 1 emergency major stomach surgery in Mexico while on a mission trip, gained 60 lbs due to being unable to exercise, heart stints, now having major asthma problems. All including, 40-50 ER visits and 10+ hospitalizations over the last 3 years. Meanwhile he became addicted to the narcotics he was prescribed because he really needed them. Now his personality has changed so much my sweet and outgoing husband has retreated into himself to the point of alienation of all who knew and loved him. Our children are angry with him because he overeats, drinks, and generally doesn't take care of himself. They feel that if he did much of this would be better and that it is really his own fault. Meanwhile he has been hired and fired more than 17 times in 10 years. So his financial contributions have been minimal at best! I believe the narcotics have affected his brain and so that even when he is not on them, he is unable to process the way he used to. He is extremely depressed and disfunctional. All of these things have been such separate issues that SSI disability being approved seems unlikely. He is basically very sick, physically, mentally and spiritually.
This brings me to the spring of 2016 when the stress brought me into a major depressive episode that almost took my life. At that time, I decided I had to leave him to save my own life! As it turned out financially we couldn't afford to live apart due to the massive amount of debt we have accumulated due to his illnesses. I pray you all find something that helps you. I do feel much stronger now and am much more able to make myself happy throughout all of these very stressful circumstances by applying principals I learned in the book I mentioned above. I too am a Christian, and when he and I married we agreed that divorce was not an option for us. This Vow is why I am still here with him. Please be kind to yourselves. Do what is best for you. Only YOU know what that is. Wishing you all sanity and peace and strength!

January 14, 2017 - 3:39am
EmpowHER Guest
Anonymous

Reading all of these posts broke my heart. I have been with my husband for 12 years, I've had multiple sclerosis through all of them. We love each other so much, we laugh together and do so much together. I posh through the pain and hard days just so we can experience things together. I lay awake at night feeling like I'm not good enough for him. I've recently had to start working only part-time and have been depressed. I never mean to take it out on him and when I do I come to my senses and apologize right away. So because we are sick, it is true? We do not deserve to be loved forever? I love him so much that. Would let him go if that is what made him happy. He always says I'm his soulmate and no one could ever replace me. Is it selfish if I commit suicude to let him be happy without having to make the decision to leave me? I don't want to damage him but I feel whatever choice I make is wrong. I just want him to be happy.

December 7, 2016 - 5:51pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Your husband loves you and it sounds like you have a loving and positive relationship. It would break his heart if he was to lose you because you made the decision he didn't want to be there - that is your fear and projection, not his position it doesn't sound like.

I live with a chronically ill man. I don't begrudge his illness or even how it sometimes comes out -- my problem is he doesn't take responsibility, isn't proactive about caring for his condition, and wants a magic pill to fix everything. IF he was showing up to deal as best he could, that would be more than enough.

It is a gift that you have each other, whatever is going on. Fear and projection take us down. Keep the lines of communication open with your husband and let love connect you both and be your guide.

Life is full of challenges, if you have someone who sees and loves you, treasure it!! Yes, sick people deserve love and you have someone who knows that.

January 21, 2017 - 9:28am
(reply to Anonymous)

Hi, reading your post breaks my heart for you. It sounds like you and your husband have real love, friendship, compassion, kindness and understanding. It must be so, so difficult for you to be losing your independence and having to rely on him so much. I knew a couple where the husband had MS and his behaviour due to frustration and anger became so unbearable that he begged his wife to leave him as he loved her so much and did not want to treat her in that way but he could not control his temper. She did leave him, however, has to live with the guilt of this every day. It was very difficult for both of them. Your husband sounds like he truly loves you and he is in it for the long run and you too sound like you love him as you don't want to damage him and want to protect him. I just wish you both good luck. xxx

December 8, 2016 - 12:24pm
EmpowHER Guest
Anonymous

Sounds like he already knows divorce is imminent and doesn't care. Is that correct? If he has no interest in you physically or emotionally. If he stays angry all the time. If he won't go see a counselor or therapist in the hope of saving his marriage••• then I believe he has spoken, and you don't need to feel guilt. I am a woman who has been bedridden for the last 7 years, and things will only get worse for me. My husband of 30 years is my only caretaker. Although I cannot have intercourse-I can be romantic and take care of his needs in other ways. I am just grateful that he brings me something to eat a few times a day. I will not be picky. I am always sure to thank him-especially for the chores like my bathroom needs. I have a phone and a check each month and so now and then I pay a college student to come sit with me for 4-6 hours while I send my husband and our Pastor out golfing. The student will sweep, vacuum and mop all floors and clean both bathrooms and kitchen. This makes my husband feel like I am thinking of his needs-although I cannot personally do anything for him. When he comes home from golfing-he is physically and mentally refreshed, and the house is clean. A chronically ill spouse need not be a constant drain on the other spouse. After all-if he left me, who would care for me?

December 1, 2016 - 2:14am
EmpowHER Guest
Anonymous

I am the one who is ill, AND I am the one being abused... I'd like to leave my marriage of 31 years, but I've been bedridden for the past 10 months. Whereas prior to my illness I was the one who held things together, I'm now very weak and unable to do much - even for myself. I'm unable to drive to doctor appts, to the store, etc. My husband pretends that I'm not in the house. He grocery shops for himself alone, and what food he does purchase he keeps locked in his car. He does not check to see if I'm dead or alive. When I ask if he will drive me to a doctor appt., he'll say he's too busy; I should take a bus. The nearest bus stop is over a mile away, which is further than I can walk. I worry that without support I won't be able to recover sufficiently TO LEAVE him. It's been impossible to describe my circumstance to my health care providers. They simply don't believe me. I have two grown sons in their 20's who both still live at home. One hates me (thanks to my husband,) and the other is worried to death about me, but he lacks the maturity and emotional strength to help me much. He does see to it that I get food, and he has driven me to several medical appts. He also picks up my prescriptions for me and checks on me daily. Just another perspective on the problem...

November 14, 2016 - 9:31am
EmpowHER Guest
Anonymous

My heart goes out to everyone who has posted here. I'm there too.

I realize that finances may be a concern, but seeing a therapist on an ongoing basis has helped me immensely. Thankfully we have one on our insurance who is excellent. I've also been very open with several close friends who support us 100%.

My husband periodically decides to pack his bags, and we've always talked it out. I can't imagine how he would cope alone because he has memory issues in addition to his physical problems. But we've decided that we're going to let him go the next time that happens. It's just become to chaotic, although as others have said, there are good times too. Just in case, I've already picked out a lawyer, and she helped me work through how to prepare. In year there won't be any custody issues.

The reality is that he probably won't last long. He's very likely to have a stroke or heart attack in the next year according to our internist. There have been three cardiac scares in the last year with nothing definitive from the scans, but his blood work is horrible and he's 70 pounds overweight. Sometimes that keeps me going. This isn't going to on for much longer.

And I won't hesitate to put him in a good nursing home if it comes to that. Let the professionals deal with it!

November 14, 2016 - 7:34am

I felt so comfortable with my decision to leave my husband. At 31 I thought I found the love of my life, 20 years later I am recently divorced, basically due to a STROKE. Our relationship wasn't perfect before hand, he was obsessive and demanded a lot of attention, but we did enjoy each other. He also had a codependent relationship with his mother. Six , years ago he became ill with bronchitis and high blood pressure. He was smoking approximately 3 packs a day. Two physicians told him he would leave me a young widow! He didn't make any changes. He wouldn't take high blood pressure medication and continued to smoke. He made his decision despite my pleading for him to make changes. After his stroke he was a different person. He recovered in many ways, but over the years became critical, demanding and not in touch with reality. I applied and received VA benefits for him, so he is independent financially (I am not). Towards the end of our relationship, there were accusations of me having affairs, guilt imposed if I even left the house without him, I couldn't have a phone conversation without him correcting me or interjecting his opinions. I basically lost all outside contacts.
I almost waited too late to leave, feeling that I was on the verge of a nervous break down. I am now in what I consider a new, yet so far stable relationship, but have difficulties accepting that everything is okay. Perhaps that is from some kind of guilt? There are some opposed to the relationship, he is 27 years my junior and we did move in together quickly after I separated. My friend's are concerned that he will hurt me emotionally. One of our friends told him he was a rebound, despite the fact that my marriage has not been a marriage for over 6 years. The marriage had become me as a caregiver to someone who almost daily initiated arguements; sometimes throughout the entire day.
I was warned that there may be guilt later. I do feel sorry for my ex-husband and seem to have a hard time accepting what seems to be the beginning of a stable relationship. The biggest problem is when I am alone at night and my new boyfriend is at work. I begin to question everything. I know I could never go back to my ex-husband despite that being his hope. I always explain to him that the relationship became toxic and codependent. He can't even process what has happened. So my biggest problem is feeling sorry for him. I know I tried everything possible to keep the relationship going for as long as I could without it leading to a complete loss of myself, which I am afraid may have happened. I think the biggest thing I am trying to do is to talk to people who do know me, but they are not available late at night, which led me to look at this site.
I'm not sure that I am offering any advice here, just wanting to share my story.
Please do not wait until things are so toxic that you can seem to accept the positive things that happen in your life.

November 8, 2016 - 9:18pm
(reply to Blugles)

I hear you- a chronic illness is a real stressor and many marriages break down over time. I'm a spousal caregiver and over the last few years my husband's health has deteriorated due to obesity, resulting in heart and kidney problems. I wonder what's left of the relationship we began with. If I were one of your good friends, I'd be worried about your new living-together relationship. A new relationship with someone healthier and kinder to you looks pretty attractive after dealing with years of illness and negativity. The age difference with your new guy is a factor too. I sound like I'm raining on your parade but I think we have to take some time to get to know ourselves again and heal after a marriage ends. I'm not saying that developing a new relationship is wrong but the living together seems to have happened quickly. I know you're feeling guilty but a person can only endure so much. I wish you lots of happy times ahead.

December 12, 2016 - 11:14pm
EmpowHER Guest
Anonymous (reply to Blugles)

Hi,

You tried your best to help your ex, however, it doesn't sound like he is willing to accept responsibility for his actions. You need to forgive yourself and get rid of that guilt you are feeling and embrace your new life! Life is for living! Good luck.

November 9, 2016 - 8:34am
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