Living with and possibly leaving a sick spouse - a heartfelt story from a reader looking for advice

Hi
I am 36. Married for 10 years. Together 19 years. I married my husband knowing he had an illness. Never realizing it would get to where it is today. In between the 10 years of marriage, my father died who raised me, my mother died who I chased all my life to love me (in my arms she died) and 7 weeks before her passing I cared for my grandmother until she died.

Fast forward to today - I am so angry at my current lot in life. I have decided to leave my husband, and this decision will cause many to judge me. It is painful to watch someone slowly wither down. Even more painsful since I have watched death a few too many times in my 36 years. Lastly, I never considered having children because it was not an option due to his illness. I am heartbroken over leaving him.....sometimes the pain of staying is greater than the pain needed to leave.

I am sorry for what you are going through but honestly, we are human, and can only take so much pain....in one lifetime. I was the wife that did it all! I am spent and I am tired of staring illness and death in the eyes everyday. I am extremely compassionate and very loving but again I am human. I am weak and I need happiness too before I get sick in the head.

I feel guilty also, I've cared for us financially for years. But again I am human and I too have needs. It is a balancing act. Maybe I came to a selfish part of my life and am desepartley seeking happiness especially since I am half way through this life. I am full of energy, vibrant and have managed to keep myself up even through all of this. I agree that part of me is failing my marriage vows. I hope I will be forgiven. Not sure I helped at all or if I am reaching out for my ownself..... non the less I am sending love and a hug your way...

all the best :) rachelle

I feel bad about all these stories both sides. My wife has RA and all but gave up. After years of doing more than my fair share and feeling unappreciated. Her depression, and laying around being waited on hand and foot with sparks of effort here and there, I stepped out. It was wrong, my fault and recovery has been arduous.

My issue is after constant battles and her possessive ways, (which i don't blame her for) i feel enough is enough. I don't have much left. my youth has been wasted and as much as i tell her she doesn't have it as bad and as severe as some people she plays her disease on me and the family as if it is terminal.

When ever i have had enough, she does for her self. Gets around and contributes and then uses that as a "see i am trying" or "when i try i get worse" She is over weight and that helps contribute and compound her issues. Which is now leg nerve issues, lung issues, blood pressure. She doesn't take her meds like she should and eat properly. I eventually made her responsible for those things because i got weary of nagging but to no avail. I am tired. I have expressed this and usually get band-aid efforts. I never considered leaving until now. Am i wrong?

(I recognize there are 2 sides to every issue but i am tired of being pragmatic, diplomatic and sacrificing for others to feel good about themselves. Especially when the effort doesn't appear to be of one who claims to love with all there heart those who are taking care of them.)

I too am going through the same thing. I am a healthy 36 year old female who married a man with MS. Things were fine until his oldest got pregnant at age 16 and he had a replasp. Now he has more cognitive issues then physical from the MS and because of that he had to go back on disability. He does some housework but can't do much because he also has heart disease that cannot be fixed with surgery. He has stopped all health care and meds, deals with, sometimes massive chest pains daily and does not take his nitro for them. He too can be extrememly demeaning and down right hateful. He hates his body, his life, etc so it's hard to love anyone when he's so busy hating himself. I also struggle with the thought of leaving him but so far have stayed. All the understanding his issues only gets me so far, then I'm to the point of who's understanding me?!? If I left him, he has all day to make my life hell if he wanted to and since his body and brain are just getting sicker I can't trust an emotionally unstable, physically sick man to behave repesctfully. I have thought about counseling but have an issue with that personally. Why am I needing the mental help to deal with his depression?!? I can't see the silver lining in this, if he don't get the help he needs then I'm in counseling forever and I'm too practial for that to make any sense. Anyway, you are sooooo not alone and I pray for you to have strength and courage to deal with all of this. God be with you!

I agree. He told me that he wants to try to fight it, and if he is legitimately attempting to get help or find a way to deal positively, then I'll stay. He probably won't go to counseling - I've tried and he was never enthusiastic. We even went for a short time, but he never really engaged. I did tell him, however, that we would leave if he became toxic to me or the kids, or if the situation negatively affected the kids to the point where I know that being away would be better for them, and for me.
He understood. He probably does, more than anyone could, considering that he's lived through it with his mother so he knows how bad it can get. I know that, in his heart, he doesn't want us to go through this, and I think that he will eventually end it with me if things go really bad just to spare us all.
I hate this. It sucks. Thanks for your comment.

I am a 38 year old mother of two who has been married for five years. My first son, who is almost 9, is not my husband's son, but he has raised him since he was 15 months old. My son's bio dad gets visitation. In the beginning, my husband was charming, outgoing, funny, socially active and engaging. I knew there was something wrong, however, because he never seemed to really want to accomplish anything for himself. He seemed to have really low self esteem. His mother was dx'd with MS when he was around ten, she was a single mother, and died of complications about nine years later. For all intensive purposes, my husband grew up without any real support or supervision.
I have been telling him in the seven years that we've been together that he needs to 'drive his own bus' with regard to his life and to take ownership and control of his destiny, but instead, he lets life happen to him. I have warned him numerous times about his weight, his diet, his lack of exercise, et cetera, and all that has earned me is his resentment toward me.
For the past two/three years, he was extraordinarily fatigued, always felt terrible, developed anxiety issues and mood swings. I was so angry because I knew that things were getting worse with his health, and wasn't doing anything about it.
In April of this year, he experienced eyesight issues. He went to the Dr. and after an MRI, was diagnosed with Remitting/Regressive Multiple Sclerosis. He is 34.
Instead of this being some big wake-up call (as I'd expected), he has further retreated into self-pity and won't do anything to really help himself. He's gained weight and has let his dental decay run rampant (which is another problem I was hoping he'd do something about). He is on immunomodulators (Copaxone) which is an injection he takes every day.
There is this misery in my house. I am exhausted emotionally. Ever since our son was born (who is now almost 4) I did almost everything whereas he 'checked out'. We were just starting to work on things when he was diagnosed. I was halfway out the door before that.
Now, I'm posed with a few choices: either, a) stay and watch him deteriorate, while the kids watch and have to deal as well (even though my older son isn't even his), b) stay, and perhaps this is as bad as things will get, which isn't great, but at least it won't get any worse, or c) leave, and have to deal with the guilt, as well as explain to the kids how I walked away from someone we all love because he's sick but somehow reinforce that one shouldn't do that - because I don't think one should, but when someone isn't even helping themselves?
Just last night, I tried to talk tohim honestly about my challenges with the diagnosis and fears, and he said that he has this "why bother" outlook about it. When I asked him why, he said it is because I have emotionally left him to be lonely, that I am unsupportive, and not there for him. First, he doesn't really talk to me, and hasn't, which was a huge problem in our marriage. Second, I am just trying to keep my head above water with a very stressful full time job, two kids under ten, short-selling our house, and dealing with not only him, but his diagnosis. Third, if he wants to hinge his desire to fight this illness and survive on my behavior, then how healthy is that, and should I have to deal with that responsibility? Seriously?
I am at my wits' end, and we are only 4 months in to this. I don't know how much more I can take. I am 38 and don't want to look at my life as wasted ten years from now when I'm almost 50 and the last best years of my life are gone.

I am a 38 year old mother of two who has been married for five years. My first son, who is almost 9, is not my husband's son, but he has raised him since he was 15 months old. My son's bio dad gets visitation. In the beginning, my husband was charming, outgoing, funny, socially active and engaging. I knew there was something wrong, however, because he never seemed to really want to accomplish anything for himself. He seemed to have really low self esteem. His mother was dx'd with MS when he was around ten, she was a single mother, and died of complications about nine years later. For all intensive purposes, my husband grew up without any real support or supervision.
I have been telling him in the seven years that we've been together that he needs to 'drive his own bus' with regard to his life and to take ownership and control of his destiny, but instead, he lets life happen to him. I have warned him numerous times about his weight, his diet, his lack of exercise, et cetera, and all that has earned me is his resentment toward me.
For the past two/three years, he was extraordinarily fatigued, always felt terrible, developed anxiety issues and mood swings. I was so angry because I knew that things were getting worse with his health, and wasn't doing anything about it.
In April of this year, he experienced eyesight issues. He went to the Dr. and after an MRI, was diagnosed with Remitting/Regressive Multiple Sclerosis. He is 34.
Instead of this being some big wake-up call (as I'd expected), he has further retreated into self-pity and won't do anything to really help himself. He's gained weight and has let his dental decay run rampant (which is another problem I was hoping he'd do something about). He is on immunomodulators (Copaxone) which is an injection he takes every day.
There is this misery in my house. I am exhausted emotionally. Ever since our son was born (who is now almost 4) I did almost everything whereas he 'checked out'. We were just starting to work on things when he was diagnosed. I was halfway out the door before that.
Now, I'm posed with a few choices: either, a) stay and watch him deteriorate, while the kids watch and have to deal as well (even though my older son isn't even his), b) stay, and perhaps this is as bad as things will get, which isn't great, but at least it won't get any worse, or c) leave, and have to deal with the guilt, as well as explain to the kids how I walked away from someone we all love because he's sick but somehow reinforce that one shouldn't do that - because I don't think one should, but when someone isn't even helping themselves?
Just last night, I tried to talk tohim honestly about my challenges with the diagnosis and fears, and he said that he has this "why bother" outlook about it. When I asked him why, he said it is because I have emotionally left him to be lonely, that I am unsupportive, and not there for him. First, he doesn't really talk to me, and hasn't, which was a huge problem in our marriage. Second, I am just trying to keep my head above water with a very stressful full time job, two kids under ten, short-selling our house, and dealing with not only him, but his diagnosis. Third, if he wants to hinge his desire to fight this illness and survive on my behavior, then how healthy is that, and should I have to deal with that responsibility? Seriously?
I am at my wits' end, and we are only 4 months in to this. I don't know how much more I can take. I am 38 and don't want to look at my life as wasted ten years from now when I'm almost 50 and the last best years of my life are gone.

Hi there

I am a few years older than yourself and my husband was diagonised with MS in his twenties which like yourself, I was aware of when i married him 10 years ago.

MS affects each patient differently and I too have had a fair few problems but mine have been with both the emotional and physical effect it has on both of us and seeing how he has gone from an extremely active person (number 1-2 seed in squash at Unni) to barely walking has been very hard to deal with. He has not ventured out for 4 months now and only when I take him out - usually to go shopping. However, I have been extremely fortunate that my husband has been able to keep a lid on his 'mood swings' (a bit like PMS except it can be a lot worse as I am sure you are experiencing).
Family have not been supportive where they have tended to lecture rather than actually physically help with anything and I too have felt very isolated for over 6-8 months but have managed to get out of this on my own by focusing on other things to keep my mind off the situation and the 'living each day at a time and not really thinking too much into the future'.

I have found speaking with other MS patients through the MS Society and MS Trust, forums, and especially his MS nurse has been invaluable and would urge you to go to your GP and mention this. They will put you in contact with an MS team who will be able to assess and provide some support.

Having said all this, I did right at the beginning agree with my husband that I will be with him and look after him as long as he can keep a lid on his mood swings. Luckily he has and he too has not been working for nearly 3 years now, can be very tight even though he is not paying for anything now and yes, there is hardly any financial help for this with the exception of Disability Living Allowance where you can get a little help to aid with trying to live at home together.

Your situation does sound really bad, and I would urge you also to confide in your family too. I feel if I was in your shoes and I have known my husband for over 21 years, I would leave him. I know this sounds cruel but I really do understand what you are going through and you really cannot do this alone. Afterall, no one really asks after the carer, and MS not only effects the person who has it, it has a real impact on his/her spouse. Even though I too knew he had MS, it was nothing compared to how he is now, and it is only going to get worse. I know this sounds really negative, but unfortunately, living with MS has taught me that.

I wish you all the best and please do not feel guilty at all. Afterall, I know wedding vows were made and I am very serious about mine too but I have come accross some very difficult MS patients too and know I could not do all the things I do for my husband if he was so bitter. It does not help him nor anyone around him. Try mentioning this to him as it feels as if he is still in denyal.

How great that you have this family support. Hang in there. This isn't going to be easy and I'm sure that he will be angry. Things have to change in your relationship. You are already "angry and resentful" and I am sure it's a matter of time before you begin to have physical manifestations of the stress that you have been living with. Keeping you in my prayers. Nicole

RedWoodGirl-I agree with Susan in that it sounds like some mental issues. You sound like an awesome woman with a lot to offer the world. I think you deserve to have a life and if I were able to pay my spouse $800 a month in support, I'd be out of here faster than you can blink. I wish you well, keep us updated.