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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 August 18, 2016 - 8:01pm

This is so painful and I hope that I can get some relief and perhaps some advice on how to deal with this issue. I am in my late 50's and my husband in his early 60's. We have been married for 8 years and he has been ill for about 6 of them. Mostly it's Parkinson and he has the added aspect of having a cervical laminectomy which leaves him unbalanced with a walker and reticent to use a wheelchair. I think we have worked out the mechanics of him being home while I work but is it time for another solution? He does not want to go to a nursing home or anywhere else for that matter (a poor experience with his mom does not help). I have done what I think I can to keep him remain at home. Is my thinking he should go to an assisted living place selfish? Is it my needs or his that I am thinking of? I am concerned about his safety and my sanity. Neither of us are happy right now. And sadly he has accused me of waiting for him to die. Is that true? What am I anticipating to happen? To what end? Thanks for giving me a place to voice my horrible thoughts.

August 18, 2016 - 8:01pm
By August 18, 2016 - 3:41pm

Husband & Dad-- Just recently became a member and I've sensed how one's livelihood is so very diminished by what I would refer to as caregiver brown- out or burn-out.
Perhaps reading or just being inundated helps but talking to someone about your spouses disease or disorder to a doctor helped me at a time when things were a huge unknown
I retired and hoped for the best two years ago. knowing my wife's battle with an auto-immune disease known as vasculitis was all consuming to her life. On that premise we carry on but like yourself I deal with my own feelings complicating my brand of care which is or should be putting her first. I'll describe the effects if I may.
The things-the good things in a marriage of 40 years are fading and leaving me now as they fade to find new interests to if you will replace the ones going. My livelihood is at stake and not to sound selfish needs a fresh page.
I have new acquaintances, old friends, some creative skills and need to go on walks by myself to clear the palate -- It really is self preservation Lets call it what it is.
When not a single soul can help you must circle the wagon and safeguard yourself against anxiety -- Keep active my freind,

August 18, 2016 - 3:41pm
By HERWriter Guide August 11, 2016 - 1:51pm

Thanks for writing to us! 

Regardless of what your family think (not liking someone for being poor is ridiculous) you need a break.  My advice is to separate for a month and re-evaluate and for heaven's sake make sure you don't get pregnant. 

You need respite from this war at home and a therapist is a good idea too. His illness has become yours. Please take a break from this situation so you can see things more clearly. Please stay in touch with us! 

Susan

August 11, 2016 - 1:51pm
By August 10, 2016 - 9:20pm

This morning I felt lonely, desperate, and trapped in the emotional pit of caring for someone, wondering when enough will ever be enough. Then, I came across peoples' posts here and I am astonished to learn that there are others like me. I really relate to having only 25% of my husband. We're both young, in our late 20s, married after 2yrs, and are with out children. I had my battles with Depression and Anxiety and figured out my own care plan that works. However, two years ago (months before our marriage) his mental health started to decline. He developed mood swings, anger fits, days where he was glued to his chair in dark depression, and was an uphill battle for him to admit anything was wrong.

Skip to today, 1.5 yrs later, and he continues to worsen despite therapy, medication, and lifestyle changes. I'm at my wits end with him. He has anxiety attacks so bad he shakes uncontrollably in public. Mornings are the worst, he wakes up incredibly grouchy and lashes out at me verbally over him losing his "glass" for example, he then forgets about what he is saying, then mood flips and is happy but confused why I'm upset. Every day I try to help him and remind him of his mood stabilizers, and I'm snapped at. He tries to control situations he fears by being nasty and I'm too tired sometimes to respond properly. For the last two years I have been the provider, home cleaner, caretaker, and a therapist to him. Sometimes his depression talks for him, that he sees no point to his life, I've even called the cops in attempt to get him help. This would be easier if I wasn't so alone. He pushed his friends away and mine are tired of the drama. Ever since I met him, when he had his life together, my family has snuffed him for being poor. Even now, my family ridicules me for who I married and constantly tell me to divorce him. I suffered through depression, but his is different. Last month he became overwhelmed by the thought that I had left him so he broke half the dishes. He then cut himself up. Why the cops didn't take him to a hospital is beyond me. We've switched doctors, meds, and treatments, even his label; OCD, BPD, MDD, GAD. I'm always trying to find some label for his 'disorder'; current one is now autism, but what if his label is just 'Terrible-Person-Syndrome'. I hate myself and I'm relapsing into depression, emotional eating way out of control, I'm in a mess and I don't know what to do alone. I try to take life day by day, remind him of his pills, his appointments, and hope that someday I'll be free of his emotional prison. I remember why I fell in love; he's brilliant, funny, and we have great intellectual chemistry. Even now we still maintain some intimacy but it is very strained. I guess I'm afraid I made a lifetime commitment to be someones punching bag and pillow, who never gets to live.

August 10, 2016 - 9:20pm
By August 10, 2016 - 9:27am

I'm new here. I've been married for 19 years to my husband. He is 18 years older than I am. I naively thought that age was just a number. His health has deteriorated over the last three years. It started with him going into cardiac arrest - he was dying and they were able to revive him. He now has a pacemaker. We went through that scare and then 8 months later was put on dialysis. I figured I could be a kidney donor but that has been a slow process. Now he may lose his foot due to diabetes. I am 45 years old and he is aging faster than my parents. I feel like such a bitch for wanting to pack up and leave. I'm tired of him always being sick. It's always something and it doesn't feel like things are going to ever get better. We have a 17 year old daughter who is also affected by his health issues. We don't go out like we used to and we haven't been intimate in over 10 years since he is also impotent. I resent him for ever dating me. I was a naive 22 year old with low self esteem and never thought anyone would want me. I always wanted more children and he took that away from me. I am just tired and want to leave, but I feel sorry for him. I wish he would love me enough to leave me and let me try to find happiness elsewhere. Thanks for listening to my rant but there isn't anyone I could really talk about this with. Anna

August 10, 2016 - 9:27am
By July 30, 2016 - 9:07am

I hope this finds you well. I too have a spouse with chronic illnesses. I understand every word of what you're saying. For me, there are some differences but overall I get it. You have to find some moments for yourself. It's not selfish at all because you can't be any good to her or your little one if you aren't taking care of yourself. That's so important. You are a human being first and foremost. Yes, it's extremely difficult for her and she is the one experiencing pain but you are experiencing emotional pain as well. These illnesses affect everyone and everything. How you engage and relate to one another. It takes it toll which is why you have to find time for yourself and to be together. Also understand that she probably feels some guilt as well. I mean think about if the tables were turned. When I get my fill I go there to remind myself if I were to be in the same situation. It's a lot I know but the first step is what you've already done in finding an outlet. There is no judgement.

July 30, 2016 - 9:07am
By July 30, 2016 - 8:57am

Sorry to hear of all that's going on with you and your family.
You have to make a decision because the illness doesn't go away. There will be some ebb and flow of how he's feeling from day to day, week to week, and so on. You mentioned that he's had several surgeries. He's probably not going to have a "normal" life again. However, find some time for just the two of you and try suggesting some things such as support groups, or a therapist. Also, physical therapy. I'm not sure what kind of insurance he has but take care of that and also apply for disability.
Also take into consideration there is depression associated with chronic illness. Hence, therapy.
All and all, understand that he will not and is not the man you met. You have decisions to make. There is nothing wrong should you decide you can't handle it. Being a caretaker is hard work. Should you decide to stay get some
Help for yourself as well and make sure you are taking care of you. Be well on your journey.

July 30, 2016 - 8:57am
By July 28, 2016 - 1:28pm

Insurance Mom - for Heaven's Sake don't. Getting married because you feel sorry for someone isn't the best reason. The doubts are't going to go away but once you are married it will be far more difficult to break up. Give yourself a breathing space, think of your kids; have a holiday with a girl friend but don't marry yourself into being a perpetual nurse.

July 28, 2016 - 1:28pm
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

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