Improved
6112 HealthChanged
3786 LivesSaved
3568 Lives0 lives impacted in the last 24 hrs Learn More
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?"
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment550 Comments
I'm glad to hear you ar doing well. I have a lot of support from my family and friends who know the real story of my marriage, but since my husband is the ultimate "nice guy" with everyone (except me), I doubt that the neighbours think much of me. His family re likely shocked and appalled as well.
I still cry every day and feel guilty and I'm not sure I ever will feel totally ok with leaving. I just know in my heart I can't live in an emotionl vacuum and without any real love from my husband. I think there is a better life "outside" and I will try for that while I am still well enough to do so.
August 27, 2010 - 7:42amThis Comment
Hey everyone - EmpowHER was developed for all women. We provide a safe forum for women to express themselves and we fully expect there will be divergent points of view. Please work with us to keep this site, and this thread, a place where a woman feels comfortable expressing her concerns about her personal situation and not a forum for comparing one situation to another. Each situation is important to the person who is experiencing it, and to us as well.
July 30, 2010 - 4:09pmThanks.
Pat
EmpowHER Moderator
This Comment
Gedmonson, Please don't go! I would like to say that I enjoyed reading about your story last night - again, it makes me feel not so alone. I imagine that there are many of us living with frustrations and anger in our own situations, that at times it comes out as if some are comparing who is better or worse off. I know that is not good for any of us! All of us here are trying to adapt to unexpected and many times awful situations - we need to be a resource to eachother. I don't know the person who responded to you or her situation, but I hope you stick around as I imagine there are many who could learn from you and hopefully you could learn from others. I too am a 40 (something) well-spouse, with young kids dealing with an ill spouse. While he does live with me, I dread the day that he will have to go to nursing care - for many reasons. Yet I expect there may be some relief in it for me as well, mostly at night - which are his worst times. I also miss the companionship, the intimacy and am always confused about what the best or right thing to do is - so you are not alone!
July 30, 2010 - 12:43pmHope to hear again from you - and best of luck!
This Comment
I am a very young 40-yr-old with a 10-yr-old and a 14-yr-old. I married my high school sweetheart, the man I have loved since I was 14.
July 29, 2010 - 10:23pmWhen he turned 30, in 1999, he started to behave strangely. Many doctors/treatments/medicines later, he was diagnosed with a terminal brain disease. It is a very slowly progressing disease that quickly took the essence of the man I married, leaving behind the shell of his body all these years. Very quickly his family and I realized he needed 24-hr skilled nursing care, so he lives in a facility that provides for his needs (about 20 minutes away). When diagnosed, he was given 3 - 7 years to live. I was upset and unsure of how we would live our lives in this "waiting for him to die limbo". I decided, based on my vows before God and the values I have and want to pass on to my children, that I would stay married to him and remain faithful. So I have lived my life, functioning as a single mom, for the past 9 years. At the time, one thing that kept me going was that it might be over in 3 years. That came and went. 7 years came and went. Over the years I have had times when I DESPERATELY wanted all of this to be over. I would never have imagined I would still be living like this so many years later. Other than being somewhat lonely and missing romance/intimacy, my life is so good. My kids are more than awesome. I live a modest, yet comfortable life. We have so many people that care about us. They all want this situation with my husband to be over. I stay with my husband for many reasons. First are those vows I made before God. My given word means a lot. It is important to me to keep my promises. It is important that I set this example for my children and others. I choose to spend this season of my life concentrating on my children. When I do remarry one day, I am giving that man the gift of a wife who will be faithful and honorable. I deserve the dignity of being my husband's widow, instead of "the woman who divorced her sick husband". As I write this, I can't emphasize enough that I do not judge others. These are my reasons, personal to me. I support everyone here no matter what their decision has been. I know all of our circumstances are different. I am a bit jealous of those who have left their husbands and are moving on. I have spent a good bit of time over the years fantasizing about being free. I can't say with absolute sureness that next month or next year I won't be throwing in the towel and filing for divorce. Two years ago my husband almost died from choking (happens often to people with his disease). His pupils were dilated, he was having seizures, and unable to breathe on his own. The ER doc worked very hard on him and was able to revive him. I looked at her as she said this, with my heart absolutely broken that I was so close to freedom from this situation, only to have it snatched away, and told her that he has a DNR (do not resucitate order) on is file and he was not supposed to be revived in a situation like this. I told her about his disease. Her face fell and she said she was so very sorry and would not have done it if she had known. I was so upset and angry at my husband for surviving, that if a lawyer had been standing there with divorce papers ready to sign, I would have signed them without a second thought. So to all of you struggling with similar issues, I just want to offer the way I live in my situation. I know I have it so much easier than those who are care-taking their husbands, those very emotionally broken men. My husband has been blessed with being oblivious. I have my good phases and my bad phases. I am blessed that my good phases very much outweigh the bad. Big hugs and my sincerest emphathy to all of you. Stay strong. Do what is best for you and your family, if you have children. I am praying for us all.
This Comment
I understand everything you write about your situation and that you have not divorced, but you have it extremely much better than anyone else I've read who has written in this forum. You're saying you know that, which is fine, but believe me, you would feel everything you're feeling times 100 if you had to see/witness/listen/take abuse basically every single day of your life, which you have not, so you are right, you are very blessed, fortunate, supported, and everything in your life seems to go very well, fine, and good (except that you're just waiting for him to die so you can be "free", whereas, most of us want to be free but have to be "stuck" in our situations for whatever numerous reasons AND have to "put up with the spouse" at the same time, in the same household, which makes it a LOT worse). I'm not waiting for my husband to die, to me THAT is a bit selfish, I don't want him to die, I just want MY situation to get better, so I am trying to "do something about that" (making my OWN plans, using my coping tools, recovery, self-work and focus), not waiting for him to die so "I can have a life". I'm trying to make myself a life now, even though I'm still in my situation, I can at least try to keep my hope/faith/belief/trust that I and God can work this out together, about me "staying or leaving" (even though I've wanted to leave since the beginning of this nightmare and have gone through all the "guilt of leaving a sick spouse", etc.). The bottom line for me is that he is getting treatment and is "status quo" and that I don't deserve to be treated badly by him, so if I'm to keep the focus on myself and take care of me (because no one else will), then at the end it's best to "do what's best for you" because what quality of life will I or he have if I or he are not happy in the relationship anyway and he "is taken care of" (medically, financially), then "what about ME"? Because I'm not supposed to count in this situation because all the focus is on HIM and his disease, meaning there's NOTHING for me at all and I'm a human being who deseres respect, acknowledgement, etc., and if I'm not getting it, I can give it to myself but WHY would I want/need/be forced to stay in something that is not working or helping either of us (regardless of the fact he would obviously not feel that way because he wants me to 'stay stuck into it' but it's not necessary for me to do that except to appease him). If you're jealous of those who have "escaped", that means you want to as well (which you did admit). So you really want out and are already talking about getting re-married (something I will not make the mistake of doing again, but I'm older than you and there's a lot more to making that decision than just saying it, I took years to come to that conclusion). So, I see how you feel "stuck" like most others in here do, but I'm just saying I'm not sure why you would write in here since you have a good life and your husband doesn't even live with you so you don't have to put up with him and his "abuse", which is what the forum started out as the main topic (living with sick spouse you want to leave because he's become unmanageable/abusive/angry/hostile/controlling/guilting/manipulating, etc. That is the really terrible way to live (not saying your situation is not bad for you, obviously you wrote because you do think your situation is horrible, but you are right to know that you're better off than just about anyone else that's written in this forum. You have a good life, I don't, but I am going to continue to try and do something about that for ME, because no one else can or will and I don't have a problem with that. I just want a chance to "have a free life" again, and that is hard for me start over again at my age and after having had so many failures, disappointments, tragedies, traumas, in my life, including the death of my 20 year old son, and this not being my first marriage, and this marriage was supposed to be the best/last one and now it's gone to crap because of my husband's REACTION to his OWN disease, issues, and such and him taking that out on me in passive-aggressive ways which is totally sick. I pray that one day in the not too distant future I will be out of here and not to look back and know within myself that I'm not a horrible, guilty, wrong, bad woman because I don't want to put up with a sick, mean, nasty, revengeful, hateful, twisted, impossible, angry, hostile, dysfunctional, man.
July 30, 2010 - 9:51amThis Comment
To Anonymous @ July 30, 2010 12:51 PM-
July 30, 2010 - 11:36am"So, I see how you feel "stuck" like most others in here do, but I'm just saying I'm not sure why you would write in here since you have a good life and your husband doesn't even live with you so you don't have to put up with him and his "abuse", which is what the forum started out as the main topic ..."
Right, sorry! I did get a little excited coming across a group of young-ish women (some with kids like myself!) who I can relate to in a way that I cannot with 99% of the rest of the population. Silly me! I'll sign off here and go join that incredibly specific group of women whose husbands are so ill and out of their minds that they require 24-hour nursing care in a locked-down facility. And they have been living with this from when they were 30 until they turned 40. And they daily face the issue of continuing with life as it is, so very much missing having a man in their lives, or breaking free. Oh, and I think there was another woman, earlier in this board, who sounded like she might NOT be living with an angry/abusive husband. Oops, I guess she slipped by!
To all of you living in this terrible, horrible situation, I wish you all the best. Good bye.
This Comment
Forget about it, I'm leaving too, as soon as I can figure out how to unjoin the group. Sure maybe I said you don't have it as bad as the others, and I still don't think you do-- (that's all relative to each individual), but I never said you had to leave or anything else. I'm not sure if I'm supposed to apologize or not, but I don't feel like I owe you or anyone else one-- I don't need a guilt trip, I have that enough at home. You want people to see YOUR side of things, but not the other way around? Just because you're "young"?! I used to be your age. I still say you don't have it as bad, but sure, that's MY opinion and that's what this message board is about, but like you said, apparently NOT. I don't need this either, same as you. Looks like we just butted heads, that happens sometimes. I hope your life goes the way you want, good luck to you and your kids. Everyone has their own sad story. People can write in here all they want, at the end it's whether they can get over the guilt or be able to leave their "sick" spouse or not.
August 2, 2010 - 8:58amThis Comment
Anon -
I think you do owe an apology and think you hurt someone by your comments... you may not have intended to do so, but your comments made someone feel unsafe and unwelcome. I don't believe that is what we are here for. I can only imagine how tough your life must be and I wish there were ways that we could help you more, but we should not be attacking each other. We are here to help and listen to each other not attack. How can we possibly compare out situations and say we are worse or better off than someone on this site... much better i think to say words of help, support, etc or share experiences that may help others. I can't possibly understand why you would come across another person in need with such anger.
just sayin
August 2, 2010 - 1:52pmThis Comment
Oh Lord, who would have thought things could get ugly here! I am the original writer from way back. Don't leave the group. I have learned some very empowering things from people here and it has really helped me to not feel so alone. It was comforting to know that I was not the only one with a sick spouse and struggling. No situation is the same. The way life unfolds in different for everyone and how people cope/handle things are different.
I did leave my husband and am in the middle of a horrible divorce. I have peace though because I can come home at the end of the work day and am not be berated continuously. The space has been well deserved and has helped me to slowly start reconnecting with myself. I too have very good friends, family etc. I worry about how my son may view me some day, what is being said to him by my spouse behind my back etc for leaving him when he is sick.
I used to wonder what would happen eventually if I had to find him a home to live in at some point...it used to break my heart to imagine leaving him there every day and night alone. I can't imagine how I would feel if I had done so many years ago and he continued to "exist" because let's face it your husband hasn't been able to live his life for years. You didn't say if your relationship had become unbearable before he needed 24 hr care. If he became ill and quickly declined, you may not have reached the same level in your marriage. Without a doubt you have suffered and have had to deal with very difficult things. You have children and are doing the best you can to teach them how to be honorable, caring and loving people. We all want that and I'm sure everyone is trying to do the same in whatever ways they can. I think that your situation, although may be a bit different, deserves to be recognized as being difficult and that you may help someone who feels like they are in the exact same position. You have wisdom to share here and I'm sure that others can learn from you too. You are obviously a compassionate person.
Nicole
July 30, 2010 - 4:31pmThis Comment
Thanks, Nicole.
July 30, 2010 - 7:20pmThis Comment