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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 Comment286 Comments

EmpowHER Guest
Anonymous

My situation may not be as bad as other stories that i have read here, but it is stressful and I just need this moment to vent. I'm 25 years old and I met my current boyfriend 3 1/2 years ago. This is my first relationship and two months after I met him, i got pregnant. I love my son, but i'm sad that my boyfriend and I haven't had hardly any time to go out and be a young fun couple. I would have loved to have been able to travel with him and had more time to go out on dates and stuff. What really worries me is that my boyfriend has asthma, and it's gotten worse over the years. We are trying to get insurance but the process is taking a really long time and i've been paying for all of his medication (inhalers) which don't help him as much as they used to. So he goes through those a lot quicker. He breathes much better with prednisone (steroids) but that isn't good for his health and im very concerned with how it's affecting him. His health has been a major concern for me since the beginning. I try to stay positive but he is so negative sometimes; saying he's going to die all the time. It really brings me down. I'm here typing this at 1:30 a.m. because he was coughing throughout the night and now i'm wide awake. I try hard to be supportive and reassuring but there are moments like these where i can't help but think 'Why isn't there a damn cure?' Why did my first boyfriend have to have such bad health issues?' (he's been through a lot of stuff minus the asthma). My life has just changed drastically in a short period of time and i think it's really affected me. I'm not the same person i was four years ago, it's like i've lost myself. I feel like an old woman sometimes instead of twenty five and i wasn't prepared to be a mom or a caretaker at this age. How do you deal with it? I want to remain faithful and positive it's just really hard sometimes.

December 18, 2014 - 1:30am
EmpowHER Guest
Anonymous

What can I say but ABSOLUTELY AMAZING! The spell i ordered from therapist Oniha email at winexbackspell@gmail.com did just as it said it would to my ex wife and even more,she is fully in my house now with love and respect,i am so happy she is back to me and my happiness home again. You are underestimating your spells my friend as they are more like miracles from Divinity. Blessing be with you and yours throughout life...

Thanks Therapist Oniha email him at winexbackspell@gmail.com and praise him for me. He must be an angel on earth to be able to turn my love around!

December 16, 2014 - 9:01pm
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
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