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
Its seems that this is a safe place for honestly sharing how we feel living with a sick spouse. And what I am about to say I would never dare say outloud. But the fact I get to say it on here I am hoping is enough. Because I am at the end of my rope with this situation. Maybe getting this out will help me, or help one of you, or just give me enough releif to get through even just one day feeling a little less like this is all bottled up inside and i am gonna explode at any minute. I'm 41. I have 4 kids, all teens and above. My husband and I were married 2 years when our problems started. We had 3 kids at the time. We separated for a few months. Decided to try and make things work and along came child number 4. A year later and not much had changed, I was still thinking of divorce, when he had an accident. Its been 14 more years now. I have been the Mom and Dad and provider for 14 really really long years of my 18 year marriage. I don't make enough money to support us and am in debt above my head. The daily financial stress alone has driven me half insane. But its the loneliness that really got me. Understanding my husband is unable to be intimate I begged for years for at least conversation. Just acknowledge that I exist! That your kids exist! I had the kids and my job to keep me busy but what I longed for was some one who wanted to actually talk to me instead of telling me what they needed from me. My husband goes in his room and honestly just can't be bothered with us 90% of the time. I make dinner he comes out to get a plate, goes back and eats, comes back out to put his plate in the sink, then back in his room he goes. Although mentally and physically disabled he is capable of interacting with us, he chooses not to. Its very sad for the kids who used to beg for him to spend time with them, watch one of their sports, or just do a dad thing with them. Their want has turned now turned to bitterness towards their Dad. They are to old to believe me when I saw he is sick like when they were little. They understand now that a lot of this is his choice. And I completely understand how they feel. My loneliness has now turned to anger. I'm angry I do all this and he can't be bothered to talk to me. I am Mom and Dad, and the husband and the wife, in my marriage. That's it its just me, doing double duty. I'm angry his family won't help. Yet they judge everything I do as not good enough. I'm angry I have been there for 22 surgeries (alone, no help from his family) and made sure he was taken care of and had the support he needed and he let's them talk bad about the one thing I didn't do. Last year I was diagnosed with cancer. And he didn't care. His only concerns were how would I work? How would I take care of the kids? Take care of the house, the bills, and him? Emotionally I got nothing from him. I have had 3 surgeries in 8 months, recovered with no help from him or his family, my poor kids were burdened with not only him but then me. Now I'm back at work, barely making it through each day because I am so mentally and physically exhausted and I now feel like I can't get a handle on my anger. I still take great care of him, still take great care of the kids, and still take care of every aspect of our lives, but now I just feel angry every single day. I just want to scream that I'm tired. But I don't. I do what is needed and expected of me. I just don't know how much more I can do this.
January 8, 2015 - 7:06pmThis Comment
Hello
February 1, 2015 - 5:35amI feel sad reading your story, because in many ways it is like my own. I too had 4 kids, raising them without mine or my husbands' family near us as we constantly moved around. I also had a diagnosis of Stage 3 cervical cancer, which was treated by radical hysterectomy at age 44. At the same time I was dealing with my husbands diagnosis of Cardiomyopathy and atrial fibrillation. This made him unable to work for two years in the job he was doing, so I was the main breadwinner. I saw the toll it took on him, losing the job he loved and making him depressed and put on 40 kilograms and suffering erectile dysfunction. All this along with two of our kids giving us a hard time. Although they all did well at School, two of them got involved in relationships and ended up having a baby for which we weren't ready for and neither were they. So they both needed my support as well. I felt pulled in every way, and felt like running away and leaving them all to it. I tried Counsellers, going back to my Church for support, but this seemed to isolate me more. Everyone else seemed to have normal lives, while I was drowning. I felt lost, scared and didn't know what to do. For a while I turned to heavy drinking, I'm not much of a drinker anyway and it didn't take much before I'd just pass out, after having a fight with my husband or losing it with one of the kids. I hated them and him for making my life such a misery. I even started to take off and do things I hadn't done since I was a teenager, go out on my own to a pub, travelled overseas on my own and unfortunately got myself into all sorts of shit, after meeting other men who I soon realised wanted only one thing. I think there was only one thing that pulled me back. I thought of my Mum and everything she'd been through with my Father, who was physically and verbally abusive, but she never, ever gave up. She kept us all together, never had a bad word to say to me, was always encouraging although I gave her a hard time. I used to think why the hell don't you stand up to my father, but when he turned on me I realised why she didn't. Domestic violence stuns women and children because they never expect it from the person they love.
I had to learn so much to forgive him since he passed away suddenly because he never got to say sorry to me or my Mum or the others.
Life is hard , we don't ask for the bad things that come along. I wish I could say that by doing whatever it is that you want to do, will make you happy. But unless you forgive him, and yourself you will always feel guilty. I'm sure he doesn't want to be sick either. Be kinder to yourself, you have family nearby talk to someone you love and trust but whatever you do won't be easy.
Ten years on and I'm still here with my husband, the kids all grew up and left home. Every day is a struggle for my husband, he has Osteo Athritis as well now, so sometimes can hardly walk with the pain and due to his heart condition he is at high risk for surgery on his hip that is riddled with it. I wish you all the best, only you can decide what is best for you
This Comment
I totally understand how you are feeling. I'm lying in bed in tears feeling heartless because I have just ended it with my partner of 13 years. He has severe copd and is dying. I'm 46 and he is 45. I can't cope anymore and I feel like I'm dying inside. I'm so unhappy and just don't know what to do anymore. My partner is on oxygen 24 7, he is incontinent, has depression, panic attacks and suffers depression. He is moody with me and our 12 year old son most of the time. If he's not moody he moans about everything. He constantly tells me he wishes he was dead. We don't even have a normal conversation anymore, he just wants to talk about himself and his illness all the time. We have not had sex for over 2 years. We don't cuddle or kiss. There is no affection at all. I'm fed up of our son living like this also. He is waiting for appointment with mental health as he is not coping with his life at moment either. I'm aware that we could be affecting our sons mental state. So I am now worried sick about my son too. I just want a normal and happy life for my son and myself. I don't know if I have done right thing ending our relationship but I don't love my partner anymore. Have I done wrong thing, should I just stay together and try and get on with things as best as I can?
December 26, 2014 - 5:10pmThis Comment
I would think it's time to just talk openly and honestly about his impending death now. Maybe he is truly is ready for hospice...and that be a relief for every one...He and his family need to address it. Once the conversation start...let real emotion just pour forth...He may cry, yell and scream...and you my also...Don't take be so scared of the pain everyone is caring..it needs to out...but look for way that are constructive...He has been avoiding everything so it will not be easy or even rational, but when he finally gets real, he may have some things he want to say to others..probably blame at first...maybe then regret and remorse. Get him a psychologist and Chaplin to help him face his life and transition. He my balk at first just t be kind but dont give up. When things are addressed, the pain and confusion will eventually turn into a spiritual awaking for every one.
January 18, 2015 - 4:25pmThis Comment
My heart goes out to you, for I know exactly how you are feeling right now. It sounds like I, too, am going through a lot of the same things that you are. I am 33 years old and my boyfriend is 53, but he also has COPD. He is on oxygen 24/7, can't walk any distance without gasping for air, he also has panic attacks and is on xanax because of it which makes things even more frustrating, he can't lay down to sleep anymore, so he has to sit up all day and night, dozing in and out of sleep constantly, sometimes falling off the couch and making it impossible to have a conversation most days, showering is now something that requires so much energy, he is lucky to get one every couple of weeks... It's all very hard to deal with at times, for me and especially for him. Some days I just get so frustrated with him and the situation, that I take everything out on him, and this makes me feel even more guilty... I moved him into my moms basement with me, thinking that it would be easier for me to take care of him that way, but it just didn't work out that way and we fight all the time about everything. I got him approved for housing and am trying to find him his own place right now, but I worry so much about how he is ever going to be able to take care of himself in his own apartment again. I have told him several times that this just isn't working anymore between us, that I will always love him and be there for him, but I need more than what he can give me right now. The look on his face when I tell him these things just breaks my heart into pieces, as I know that I am breaking his as well. So do I stay in a dead relationship and forfeit my own happiness? I have decided that when he moves, I will still be there for him and take care of him the best that I can, but I am going to try to move on with my life and if I find someone else that I am happy with, then that is what is meant to be, because I do want love and intimacy in my life again and I want to feel like I am loved and wanted. But then I tell myself doesn't he deserve to have those same things too... I go back and forth with these feelings so much within my mind that the guilt is sometimes overwhelming. I know that moving on is what is best for me because if I continue to stay in this relationship, I will become even more resentful toward him and I don't want to feel that way. I believe that you have done the right thing by leaving and I admire you for having the courage to do it. Although, I'm sure that leaving him has been one of the hardest things that you have done, as I know it will be for me also, there is no easy and pain free solution to a situation like this. If you ever want to talk, please feel free to message me because I know how comforting it can be just to have someone to talk to who truly understands what you are going through. I truly hope that everything works out well for you because you do deserve to be happy too, you know, just like all of us do.
December 28, 2014 - 11:21amThis Comment
hi! i really have no advice as i suffer with the same feelings of guilt. unlike you, i stay undecided so i stay. i have searched the web for others that had the courage to leave and am very interested in how you are handling it. how long ago did you leave? how is he handling it? do you have good days where you don't feel guilty? are you in therapy? gosh! a lot of questions!
December 27, 2014 - 8:36ami feel badly that i can't offer anything that could help but know you have a commrade out here that knows exactly how you are feeling!
wishing you peace.
This Comment
I decided to stay after all and try once again. My partner and I have spoke for hours and decided to try and find out if there is any help for us out there. We will start with partners nurse to see if she can point us in right direction. I just couldn't go through with it, seeing the hurt on his face was killing me. I hope I have made the right decision but we both agree if it foes not work this time we will end it. So I'm afraid I can't give advice on leaving as I did not manage to go through with it.
December 27, 2014 - 1:47pmThis Comment
My husband found out when he was 39 that he had 1 kidney. They took the other one out which was just a sack of blood and the 1 he has is deformed and he has to have surgery every 3 months to put a stint in from his kidney to his bladder. He's on all kinds of meds. This has went on since 2000,now I not only have asthma but fibromyalgia. The pain is so bad. He is so mentally abusive at times and I have stood by him all these years. Now with my illnesses its making it so hard to deal with. I love him but is it enough?I know if I leave people would think I'm the meanest person alive including our children. I don't know how to deal with all of this. Oh yeah I'm a Christian and he's not.
December 24, 2014 - 6:04pmThis Comment
so sorry you aregoing through this! i can't imagine being ill yourself plus the caregiving stress.
December 27, 2014 - 8:38ami sure hope you find relief and answers.
This Comment
This is some of the hardest stuff to deal with I have could have imagined. These comments are breaking my heart. The illness coupled with a lack of loving appreciation can destroy us. Are we suppose to go down with the ship...when all we have to do is walk away? But the guilt of wanting to save ourselves tares and twists our guts until we are crazy.
Today my sick husband and I fought over some thing seemingly insignificant, but it was about all the pain in the relationship...It has to brought out into the open...We have to finds ways to be honest constructively. We don't know how to do that so well in such a challenging situation. I want to start a tread about how to address this.
December 21, 2014 - 2:39amThis Comment