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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

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

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
HERWriter Guide (reply to Anonymous)

Hi Anon

I'm sorry you're going through this.

I'm not sure you made a type-o with the ages you wrote...you are 29 and married to a 73 year old? If that is not a type-o, I'm not sure what world you were living in that you thought it would work out unless you had an agreement that you would care for him in old age and he would care for you financially. Whatever works! :)

I can be understanding and say live-and-let-live but you said it has been a bit of a mess from the start and he is very abusive.

You don't owe him anything; since he has brought up divorce, then accept it gladly and get out. Make good on his threats, he has no right to throw that word around and not follow through. The whole world is yours to explore. Don't get even deeper in this relationship. Get out while you are still young enough to enjoy your freedom.

March 15, 2017 - 3:03pm

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 (reply to mkb8910)

The tables were turned for me. I was the 1 DX w/ beast cancer. My fiancé just before my DX he was in a very serious injury car accident whiles drunk! We all thought finally bottom hit for him....as he vowed not to drink again, and go to rehab once his injuries were healed....I began my journey a month later. He remained sober for several months, but never went to rehab. During my process he encouraged me to not worry abt going back to work as he makes a decent income as a physician. Distressed andJust weeks after my last Chemo, he starts lying and notice drinking taking viagra when traveling w/o me.
When I confronted him. He left, but already found a new girl who will drink with him and travel. Gutted alone and trying to heal. I'm left financially broken. I now see his patterned manic depressive behavior throughout out 17 yr relationship, but never understood the disease being covered with alcohol. It's all a blessing, but I'm now faced with him evicting me from our home for 11yrs without means to even remain in the same community where I can walk to most medical apts. I don't even recognize this person who refused me discuss or meet w/a therapist. His felony Dui is still pending. It's a nightmare. God help us all.

February 2, 2017 - 5:31am
EmpowHER Guest

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)

He is with you that is his choice. Let him decide you commit suicide it is all your choice and not fair at all to him

March 23, 2017 - 5:49pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I have MS as well. My husband married me 3 months before my DX. But I had been having symptoms for years. He and I have the same type of relationship - we would go to the ends of the earth for each other. I feel guilty and depressed a lot, but he's always there for me. If I were you...I would try to live on and try to make him the happiest guy ever. If your husband does his best to make you happy, then you should reciprocate and be happy together. I always feel the happiest when he's happy. So it's a win-win.

March 1, 2017 - 2:48pm
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
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