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

By Michelle King Robson Expert HERWriter
 
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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?"

Add a Comment283 Comments

Ellekat

I am so happy that I found this site and have found so many others who are going through the same thing that I am right now, showing me that I'm truly not alone. I am 33 years old and my boyfriend will be 53 next week. We have been in a relationship for 7 years now. Yes, there is a big gap in age, but when I met him, he was young spirited, active, happy, and could make me laugh and smile like nobody ever has, which is why I fell so in love with him. Our relationship has never been all rainbows and butterflies, even from the beginning, we've had our issues, but we stayed strong together through many negative things. He stuck by me during a time in my life when I had no one and was separated from him off and on for 3 years. However, when I finally came home to stay, is when he started getting sick. My boyfriend has COPD. He always had a little trouble catching his breath and coughing spells due to smoking for many years of his life, but it was never something that I ever saw getting this bad, this quick. However, over the last 3 years, his health has taken a huge plummet downward and because of this, so has our relationship. My boyfriend who normally weighs about 150, now weighs around 220. He is on oxygen 24/7, can't walk very far at all without gasping for air, is constantly in pain, due to many surgerys, as well as back disease. He can't lay down at night and sleep like normal people because he can't breathe if he does, so he sits up all night and all day long, dosing in and out of sleep constantly. His family doesn't do much at all to help him and because of his health, I moved him into my mom's house, where I live, so that I could help take care of him more. However, this has made things between us even worse. He is absolutely miserable, but who wouldn't be that has to live like he does everyday. And I understand that, but I feel like I have all this weight on my shoulders and I can't do anything to make him better. Because of this, I have become very resentful and I find myself being mean to him because of it. I get mad that he doesn't do anything for himself except sit there and continue to die. We haven't been intimate in close to 3 years, and all we do is argue and fight anymore about anything and everything that we talk about. It's like we are friends, but friends that can't even get along anymore... I am overwhelmed with guilt at times. The man that I fell in love with is no longer the man that I am with today and it breaks my heart because I feel so guilty for wanting to leave him because who is going to take care of him if I do... I am 33 and I feel like I could have so much more in life now than what I have settled for, especially since most of my life has been stolen due to drug and alcohol addiction. I have finally gotten myself on the right track; started working, about to graduate from college, am able to care for my teenage children again, but I am miserable in my relationship. I care about him so much and I don't want to hurt him, but every time I bring up the fact that our relationship is pretty much over , he gets very upset and I feel so bad about it. I want him to be in a place where if I did leave, I could feel like he was going to be okay without me, but I don't even know where to start. He is very stubborn and I just feel like he won't even help himself anymore. I want to find someone who I can be happy with again, but without feeling like a horrible person and I don't know if that is even possible. Please let me know if anyone can relate to this and help me figure out what I am going to do. Thanks.

November 14, 2014 - 9:10am
orb (reply to Ellekat)

i'm in the same place. odd how many of us there are. i dont have any wise words to offer as i am asking the same questions but i'm here if ever you want to talk. i feel validated by all of you who have shared but it doesnt make the decision any easier. sily to think, though, that there are magic words that could make the decision for us! but still i hope...
anyway. i'm here and i am so sorry you are going through this.

November 21, 2014 - 9:28am
EmpowHER Guest
Anonymous

I am the one in the relationship, worh the chronic illnesses. To make matters worst , some of my illnesses are not accept eyed by the medical profession . I have married 35 years to a wonderful man. I want him to leave me and live a good life he deserves. He has taken care of me and my children and, has worked hard. Have illness that i have become allergic to everythi, and imant use any hygiene products, or wear clothes because i am allergc. I stay in sores and can't breath when exposed, it is debilitating. I have to stay isolated in a special built traler and can't be around any chemicals. I want him to leave me, I have nothing to offer him anymore, and I don't want him to see me deteriarin. Everyone else has abandaned me. He stays because he is a good man. I feel quilty we have been together since jr. High school. i am 53 and been sick 4 years. I want to end my lifespan he will go on wirh his.

November 2, 2014 - 12:04pm
Susan Cody HERWriter Guide (reply to Anonymous)

Hi Anon

Thank you for your post. 

I'm sorry you are going through so much. 

Your husband is staying because he wants to. Don't push him away and please don't harm yourself, that will hurt your husband more than you know. There must be some solution out there. Your body sounds like it has been poisoned. Do doctors have any idea how or why this happened? 

Please write back to us!

Susan

November 3, 2014 - 6:20am
EmpowHER Guest
Anonymous

I am 39 and my husband is 45 years we have a 5 and 8 year old. Unlike must of the comments my husbands health problems are his own doing. He is a long time smoker suffering from severe advanced heart disease and type 2 diabetes. He does not take care of himself and he is often anger about his health and anyone who mentions it. We have been separated this year and are slowly working on putting things back together. And today he is his in the hospital waiting on a cath and surely another stint.
My message and I what I have found is that his anger, his distance from me is all misdirected anger and disappointment in himself. THis fuels his depression, which he is not treating. He is embarrassed that he is this weak and vulnerable person, it is not who he was when he was younger. And It not who he wants to be now, he is overwhelmed by the progression of it all.
I have learned that creating my own life around his has made me happy. I stay focused on him and our young daughters' needs but I do not let his health consume me as it did. I know we will be in the hospital again, I know that the emphysema will begin soon as his COPD progresses, but I knew all this when I married him.
The more I have let go of the need to be involved in his health and the need to be held back by his health, I have noticed he is taking more of an interest in me and his own health.
They are not anger at us or hate us, they hate who they can not be for us. They hate that they can not contribute as they think they should, or preform in bed as they use to or that they are a financial drain, that's why they obsess over finances or just give up on physically getting close to us. It is misdirected and isolating to both parties. That is what I have learned and my own security now in knowing that it is not me that is the problem is making all the difference in both of us.
he is happy seeing me happy and it is a great example on how to keep moving forward despite obstacles for our daughters.
There is a little spark of hope that this time it will stick, and he will exercise and not smoke. I know that it wont stick and he will be back out there smoking, eating gas station food and not exercising. But he will still be a great father, creative and talented husband and for now that is enough. It has taken me over a year, lots of anger and a separation to come to this place, knowing that I (me not him) need to move past his health if I want a life with him.
Thanks for listening to me ramble.

November 2, 2014 - 9:20am
EmpowHER Guest
Anonymous (reply to Anonymous)

I can understand your touching story. My husband would not take care of himself and now has cancer. I cried blood and tore my heart out trying to help him or get him to help himself...But have finally just stopped trying to do much of anything except ask if wants something, anything to drink or eat. I let him let do what ever he wants and am sure his end is nearing. But we are not in a power struggle anymore. I just want peace for us...Yet I still am trying to figure out how to not have be there for everything he needs or every emergency he has. I really don't have much of a life, just sometimes an hour a day at the park to myself and I can read before he gets up which is sometimes noon. I am trying to give love, find meaning and show appreciation with out getting totally drained or lose my self. So far its not been easy.

November 11, 2014 - 8:49pm
EmpowHER Guest
Anonymous (reply to Anonymous)

That was not at all rambling!! It was so insightful.
Thank you for sharing your story. It is inspiring and has given me a little hope.
SJ

November 5, 2014 - 11:02am
EmpowHER Guest
Anonymous

I am going through the very same thing all of these spouse caregivers are going through. I myself am a spouse caregiver to my girlfriend / partner of 10 years. She's always been a little sickly but 5 years into the relationship she contracted the swine flu and was hospitalized for 2 weeks and had to rehabilitate her motor skills and retrain her breathing from the intubation and sever pneumonia. Since then i thought for sure our lives would go back to normal, but the drugs that they administered to save her life only made the side effects long life lasting. Now she is living with fibromyalgia, chronic fatigue, sever back pain, and a various amounts of severe illness that are too long of a list to take up this box. As her health has progressively gotten worse i only find myself being more of a shell of her partner and not the loving gf i once was to her. Now i feel more like a nurse than a spouse. I find it hard not to think about leaving, but how can leave her knowing she doesn't earn any money, we're living out of her parent's house cause i can't afford to carry the both of us. I love her so much but am so conflicted with the thought of even leaving her. How do i deal with being a loyal spouse and having my guilt over take me? I feel so horrible even complaining about this cause i know she would stay and take care of me till the bitter end, if she needed to. I just can't hang in there anymore, i'm dying inside emotionally and physically and psychologically.

I would like to know if there are any support groups in the los angeles area. I need to see more of you guys but in the flesh. Thanks for all the comments, they've helped me a lot.

October 5, 2014 - 10:06pm
EmpowHER Guest
Anonymous

My wife and I have been married for 16 years and I knew of her potential prognosis when we said I do. I am 46 and she 52. She has Autoimmune Hepatitis along with Primary Schlerosing Colangitus(bile duct).she has had the disease for 22 years and will need a liver transplant or this is fatal. Our marriage was great the 1st 8 years and then her career took off. Although the freedom of the money was nice, our marriage suffered as I began to take a backseat to her work(I do still have my career and work). I was decidedly unhappy and sought help and counseling through our church. Shortly after, her health began to decline to the point that her career ended and severe depression started. She is now disabled and have spent approx. 40+ hospitalizations in the last 6 years. We have been through an addiction to pain meds and live with her Encaphalopathy (extreme confusion and lethargic) on most days. We haven't been intimate in 5 years. Although I love her and miss her very much, I don't know if I will ever have HER back. I work 50+ hrs a week as and then take care her with minimal help from her family. I have been blessed with a great group of friends who often applaud me and then ask how do you do it. I am lonely and feel trapped. I don't WANT to leave, but I feel I NEED to in order to survive this myself. I feel selfish and unworthy of this responsibility anymore.

September 30, 2014 - 6:18am
EmpowHER Guest
Anonymous (reply to Anonymous)

I have been married to my husband for 20 years and 2 years ago he was diagnosed with rectal cancer and surgery . Since then he has had allot of complications. I have been by his side throughout the whole process and he has shut me out in every way it is very frustrating I have also stopped working to be with him take care of him and still nothing on his part. I have lost all hope he is depressed angry and will not seek help and he also battling addiction...All I can say to you is stay strong and I feel sometimes that we need to take care of ourself but then I have guilt of being selfish..Goog luck my thoughts are with you

October 1, 2014 - 10:33am
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