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

Aug 31 Anon,

Thank you for writing - the fact that you are taking some time to google for information out there is so wonderful. While your sister may not realize your willingness to help right now or even your interest in their situation, it will count eventually.

I am very close to being in your sister's situation, although I have not reached my threshold as you have described.

I believe that the most important thing you can do is to be supportive and a listening ear to your sister. She is in pain also. At a minimum, she is going to need time and maybe even time away from her spouse to find herself and her sanity. If you appear to judge or direct her, she will likely shut you out. Your foremost concern, is your sister and the children. You can care for her husband as well, but you need to do that separately and find out if he potentially has his own support. I don't know that there is anything you can do from a distance but to be a healthy support network. These situations are not fixable. We just all continue to find a place to survive and adjust. Your role may very well be the loving supportive brother or it may very well be the loving supportive Uncle. I doubt you will find any success in being the brother/marriage counselor.

I say all this with so much respect. I have so many people looking over my shoulder and wanting to offer advice or what they think or what they would do. At times, I listen and at times it makes me want to vomit - there is no possible way they can understand my feelings, my mourning, my anger, my love, my lost love, my commitment, etc. The ones I continue to listen to the most are the ones who listen the most and say the least. For me..., that is helpful. I dont' know if this is helpful to you or not... but I wish you the best of luck. I wish your sister and her family the best of luck as well.

Hello all,
I found this thread through some googling. Firstly I want to say what a complete eye opener reading these stories it has been. I would welcome any wisdom (im still following some of your links) and advice. Our family's story is somewhat different, but shares many common features as the ones told here ;

I come here as a very concerned brother and uncle..because our family is in shock. My sister is in crisis because she has hit rock bottom and has announced that she cannot stay in her marriage. Her husband was diagnosed with MS early on in their marriage and she has struggled so hard to become a qualified professional nurse and the breadwinner, as his progressive illness has made him virtually unable to contribute financially and now he is wheelchair bound. They have two lovely young children under 12 and I am worried sick for them and for everyone involved. My brother in law is a gentle man and adores his children but in her grief at the effective loss of her husband to this disease (he has become 'absent', distant and no doubt very depressed himself), and frustration of hardly seeing her children grow up ..she is unable to contain her anger and grief and has now demanded that he leave their home asap. He can barely walk.

I live 1000 miles away and am struggling to make my own living, and the only support they have is my widowed Mum who has worked incredibly hard to help them - even financially (they just moved into a new home to meet their needs).

His whole family lives in another country, he has almost no support apart from our side of the family. My sister saw her GP who immediately referred her to a psychologist. She has only had one treatment and my mum and I have tried to get her to stay calm and think logically, but because she is a nurse she is given to self-diagnosis ('they just validate my feelings') and is insistent she cannot even bare to be in the house with him and has even started going out all night presumably to drown her sorrows with strangers. I also think she is in denial that forcing these cruel ultimatums will not affect her children who have enjoyed such security and love.

I understand, especially from reading all your comments, how incredibly deep my sisters pain must be to be feeling so empty and low...to see the life and love she dreamed of fade away so cruelly but how can we help her from making even worse decisions when she is too depressed to make good ones even now? She says she loves him but is not in love with him. My heart is breaking for them both and we are not sure how we can help them make good choices and protect their children. He is trying hard to keep things relatively normal for them, but my sisters anger and pain is close to the surface and no doubt the kids feel something is very wrong. We do not expect her to live in that pain forever, but she is doing and saying very cruel things to him that, to my mind, will only make things worse for her and the kids. She is in such pain she doesn't seem to care. She sounds so angry when she tells me 'nobody understands how I feel' and that we should 'not judge her'. She goes from sounding cool and calm to defensive and cold.

I apologize if any of that sounds jumbled, but I'm so very worried for this young family in crisis.

I'm not sure if this thread is still active but I wanted to tell my story.

I am 59 years old and married for over 35 years. MY husband has progressive MS dx in 2000) and I left him three months ago.

Why did I leave?

For most of our marriage my husband was verbally and sometimes physically abusive. I left him because of this early in the marriage, but I was young, afraid and unsure of myself, so I went back when he said things would be better. Unfortunately they got worse.

In our early thirties he stopped wanting to be intimate with me. The verbal abuse and passive-agressive behaviour continued. I stayed because I loved my husband and wanted to uphold my vows. I remember asking God to change him. He never wanted children so we had none -- besides you have to have sex to have children. I think that throughout my thirties and forties I lived in denial about the problems in my marriage. And he refused to discuss anything.

WHen he was dx with MS in 2000 I remember saying to God that I would do my duty and stay the course. But over time he did some horrible things - one of which resulted in my having to call the police on him. I left again in 2005 for my own safety -- but went back again six months later because I felt guilty about his MS.

For the past five years we've lived like distant roommates. He refuses to do things that would make his ( and m ine) life better - like get a wheelchair or hand controls for the car and doesn't seem to care that I am burned out from doing everything and being hypervigilant about his MS. He's had a couple of bladder infections and some minor falls, walks with two canes around the house but can no longer walk outside ( uses a scooter). If I cry or break down he gets angry (as he always has) , leaves the room and tells me I should leave. He says he can't stand my depression and needs someone "cheerful." He is not cogntively affected by his MS, and manages investments for his friends. He just is and always has been emotionally cold.

I finally couldn't live like this anymore. I wanted to feel loved and have some peace before I died. I was clincically depressed and suicidal. Leaving was a bid for survival.

It's been three months and my husband has not attempted to contact me. I can only assume that this is what he wanted to. I believe he was tired of me, my depression and what he views as my failure as a wife.

We both worked good jobs and saved our money, so he will have plenty in a divorce. I feel sadm guilty and cry every day, but going back is not an option for me. I think I would die before him.

This is not a life I would wish on anyone. I still care about my husband and love him despite the years of abuse and emotional neglect. I realize he was damaged somehow long before I met him. He did not have a calling to marriage and never should have married me.

I just want others to know my story.