Facebook Pixel

affairs of the heart Join this Group

Is your spouse chronically ill? How is it affecting you?

By HERWriter Guide June 1, 2011 - 8:37am

Hi All

Thanks to lonely46 for starting this group.

Living with a chronically ill partner can be devastatingly lonely and frustrating, and it's not something society really lets us talk about.

The issue is not about whether we love or care about our ill spouse, it's about the harsh "side effects" that the caregiver suffers. While it's never easy to live with chronic illness, it's also not easy for the caretaker.

Let's share stories about life as the caretaker and the hardships (as well as the joys) of life. We can find comfort and support in knowing that we're not alone.

Best,
~Susan

By July 26, 2016 - 9:26am

I am so glad I found this. I need someplace to vent and try to figure out some things. I have been dating my fiance for 5 years now. When we started dating he had a full time job, good pay and was self sufficient. He moved into my house with my children and I and about 2 moths later had a serious attack of Transverse Myelitis. I have stood by him through it all, we are very fortunate that I have job that can support us both, but things are getting tight. He hasnt worked since the first attack. He has had numerous knee and back surgeries and is on so much pain medication that some days he doesnt get out of bed. I feel like he should be trying to do more to help around the house and support us. He has terrible mood swings from the medication and is very critical of my kids. I cant imagine my life without him but I am really getting tired of doing everything. We are getting married in less then 2 weeks and I am having some serious doubts.

July 26, 2016 - 9:26am
By July 18, 2016 - 9:11am

Thank you so much for this thread. Reading everyone's stories has been incredible this morning after feeling alone for so many years. I'm a guy, so hopefully it's ok to post here...there is so little available for spouses dealing with a spouse with chronic illness, and it seems even less available for husbands. This is the only place I've found, either online or in person, so thank you.

My wife and I are still fairly young, and she is by all accounts the love of my life and my soulmate. Our marriage of ten years has also been constantly plagued by her chronic illnesses. Though diagnosed with Celiac, there must be more as no treatments have helped. She struggles daily just to make it out of bed, and it hurts me to watch her struggle. I try so hard to be the support she needs, but I have to admit how many times I fail. Between working all hours of the day and night to support us financially as well as her health and treatment costs, caring for our two-year-old, and caring for her, I sometimes have nothing left to give her in the way of support, and I know that's what she really needs. But food has to be put on the table, and our son has to be cared for too. I run my own business, so fortunately (and unfortunately) I'm able to work extra and take extra clients when we're in danger of not making it due to health bills, and the other day I was up at 5 AM with our son, then worked 20 hours straight into 2 AM the next morning, and then cared for both of them all the next morning and afternoon because she couldn't move, and then immediately off to work again until 1 AM. She does her absolute best, and it breaks my heart to watch her try so hard and become so frustrated. In fact, she does such an amazing job despite all her illnesses though, that I feel like the biggest jerk in the world if I mention (even to myself) not having slept in 24 hours, or in two years, or how exhausted I am every second from being husband, father, caregiver, provider, medical expense benefactor, and therapist. It sounds so selfish, but I haven't done anything for myself in years now. And I used to not have to...we used to do everything together. And now we're trapped.

I feel guilty even talking about it with anyone, because she's the one suffering. Reading all your stories has been one of the most encouraging things of my last ten years. So thank you.

July 18, 2016 - 9:11am
By July 13, 2016 - 9:48am

I am glad that this thread exists! I see a bit of myself in every single entry. My husband suffers from multiple chronic illnesses. It has been years. Most of the time I can handle it. When I get overwhelmed, there is nowhere to go, no one to help. So I just muster on. His children (previous marriages) are loving, attentive, nice people. They have their own lives to live and I wish for them to enjoy it all while they are young and happy. Yes, he can be really miserable. The pain, medications and medical appointments have taken over our lives. When I do manage to get away I feel guilty the whole time because there is no escape for him. I don't like to talk about our situation because think it must just sound like a lot of complaining so I just keep it to myself. I love my husband, and he loves me so I feel awful even saying this - but - I miss the sex. I like to think I would never stray. I never have. I fear that if given the chance I might. I feel guilty about something I haven't even done.

July 13, 2016 - 9:48am
By July 10, 2016 - 6:43pm

Hi everyone,
Finding this site really filled in a hole of loneliness that I was feeling from my husband's illness. My husband has absent seizures caused from 2 brain surgeries from a nasal infection that lead to the brain and the scar from the surgery gives him seizures, carpel tunnel, neuropathy, ulcerative colitis, and a herniated disc. And to top it all we are a young married couple in our late 20s. I only knew of the seizures when we first met, and he functioned normally. But as the years went by, he started getting more and more sick to the point where his illness got him fired from his last job. We are trying to do school, luckily our parents help out as much as they can. But neither of our parents know how really sick he is. We have not had sex in a month because I am not attracted to him in that way....because I am too busy being his nurse, friend and mom, that I hardly feel like a wife anymore. The medications give him terrible mood swings and his illness makes me have to help him with his school work and my own. So I am just tired. I try not to resent him whenever I get sick because I still have to go to work and he helps sometimes because I do IHSS for my grandma, but the help he gives is like i can do that myself. When he is well enough to move, it only means his seizures and his back are okay, but it hurts him to walk. If he had it his way he would normally not get up for the day until 3pm in the afternoon. I lost a child through miscarriage a week before our wedding, and though it hurt us real bad when we lost the child, I sometimes am glad because then I would not have to worry about being a single parent in the marriage. Don't get me wrong, he is a wonderful friend and he manages to get through the day to go to class and sometimes make dinner. But.....I feel he is 25% my husband. The rest is all me and it is exhausting. And I really feel the strain on my mind and body when I need him to help out around the house, when my body is just exhausted or when I get sick. I can't talk to any of my friends in detail because most of them are not married nor have an illness of a loved one to care for, and my parents worry too much. I know I am talking too much, but i just wanted to vent to other people who knew or had similar stories so I don't feel like an inconsiderate, awful wife. Thank you for listening.

July 10, 2016 - 6:43pm
By June 1, 2016 - 3:39am

Theodora,
I hear you! But it also seems to me that you are being typically hard on yourself - blaming yourself. Why do we women do that so easily? I too have found myself telling friends that if I were a better person, a kinder person, my husband would be in better condition. They point out that that is crazy, but it IS so hard not to think that way. We are so conditioned and even judged by how caring and understanding and giving and patient we are toward the people in our lives. If we just express being fed up and if we dare stop caring, we feel we are failing as women. I often simply don't like my partner at all anymore; there are times I find him physically repulsive and his illness has made his body totally unappealing to me. Why can't i just say that without feeling like the world's biggest B? It is the truth. We have the right to take care of ourselves and we also have the right to be happy. We have to stop thinking we'r selfish and bad when we put ourselves first.

June 1, 2016 - 3:39am
By May 30, 2016 - 2:02am

My partner and I have been together for 9 years and throughout that time he has suffered periodic back problems which stem from prolapsed disks and degenerative joints. From the start it affected our intimacy and we haven't had sex in a number of years... Which I can live with, although it has changed the dynamic of our relationship. More often than not I am the one who has to carry out all the difficult lifting, and after several years of home improvements I seem to be the one who always has to carry out the hard work. Although he is very proactive about his exercise and recovery it's after quite selfish as understandably he looks after himself first. As a sufferer of depression it is often a massive drain on me trying to stay positive for him, supporting him even when I am ill and need rest. I often feel selfish for feeling overwhelmed each time he relapses and I dread the future and how much more support he will need. It's nice to know that I'm not going through these feelings alone. Should I be more compassionate, should I be more understanding.... Probably, but I often feel more like a best friend/ carer than equal partner.

May 30, 2016 - 2:02am
By May 29, 2016 - 6:06pm

my husband who has never taken care of his health developed chf four years ago the year after I retired. since then he had several hospitalizations and complications. this has really given him an excuse to demand all of my time to be available to him. i am three years older than him but still in good health and had been looking forward to travel, backpacking, hiking, and so on. now it seems like i am terribly selfish to want to leave for a week to see the sights i have always longed for. i never wanted to be his mother or his caretaker. the few times I have been ill or had surgery he never changed his schedule to care for me.this was never part of our relationship. i am baffled. what does everyone think i am the natural choice to be at his side every minute? i have had to give up two planned trips because he has emergency setbacks, that turned out to be fear based temper tantrums. i paste a smile on my face but feel like i am really letting myself down. is divorce the only solution?

May 29, 2016 - 6:06pm
By May 29, 2016 - 6:06pm

my husband who has never taken care of his health developed chf four years ago the year after I retired. since then he had several hospitalizations and complications. this has really given him an excuse to demand all of my time to be available to him. i am three years older than him but still in good health and had been looking forward to travel, backpacking, hiking, and so on. now it seems like i am terribly selfish to want to leave for a week to see the sights i have always longed for. i never wanted to be his mother or his caretaker. the few times I have been ill or had surgery he never changed his schedule to care for me.this was never part of our relationship. i am baffled. what does everyone think i am the natural choice to be at his side every minute? i have had to give up two planned trips because he has emergency setbacks, that turned out to be fear based temper tantrums. i paste a smile on my face but feel like i am really letting myself down. is divorce the only solution?

May 29, 2016 - 6:06pm
By May 29, 2016 - 10:08am

I am not happy with how I have been living for the past 15 months. I could do better, give more but I'm not sure I want to or even know how to. I am so tired and at a cross road, finding it hard to move. This week I had a stomach flu and physically could not get out of bed, this is the first time I have been really sick since my husband was medically retired from his work 2 years ago. I recovered from the flu I am exercising, eating well and looking after our family, my husband however lives with crohns, stage 3 COPD, brittle bones and depression. Our life sux. My week of the flu made me realize how little support I have, no support and I'm embarrassed about the wreck my home life is in. I'm always asking my husband to stop talking (complaining) about his illnesses, there is more to our relationship than his illness I'm sure. The really shitty thing is when I'm out with out him and people ask me how I am all i seem to do is talk about my husbands illness, so I guess that's all we do have. I have taken many difficult roads in my life and I have some regrets and wish wish wish I had been more graceful at living this life. Now I'm feeling like I probably just need to adjust my attitude and remind myself of all there is to be grateful for.

May 29, 2016 - 10:08am
By May 29, 2016 - 5:24am

I just found this site this morning and have found reading these passages so comforting - I can relate to just about everything everyone has said about the challenges of dealing with a sick husband. It changes your life, completely. My husband's ankylosing spondilitis kicked into very high gear one year ago, rendering him barely able to walk. His mood is dark; he rarely laughs; he snaps if I just ask him a question. Dealing with the pain - which no medication thus far has helped - has put him in a pain bubble that I am constantly outside of. It has changed how we interact, what we do together (very little) and everything about our plans for the future, since we are both near retirement age. I am constantly planning my escape in my mind because I am still vibrant and full of life and want to live and have fun. Of course, then I feel such guilt. How can I leave a sick spouse? But at what point do I have to give up my own life and dreams. He has encourage me to go. Underneath his rock-like exterior I know he feels bad for how this has affected me and he wants me to live the life I want. When I really think of doing it though, I break down in tears. I have the illness too - or I live the illness would be more accurate. The physical pain is his and it's devastating to watch. But I live the illness, I live a life defined by that illness on a daily basis. I never dreamed it would be so hard. So reading all these testimonials has been so helpful. I'm so glad I found the site.

May 29, 2016 - 5:24am

Group Leader

Related Topics

Description

Spouses dealing with chronically ill spouses, without sexually or emotionally connections

Location

New Castle De

Privacy

This Group is Open to all EmpowHER.com members