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

By HERWriter Guide March 3, 2018 - 12:00am

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

Here is another resource on sick spouse

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
By May 29, 2016 - 5:01am

The comment about comparing your spouse to your dad really hit home for me; my husband, who has a chronic illness that is deteriorating his spine, is only 57 - my dad is 85. My dad just started using a cane last year; so did my husband. My dad cycles 50 kilometres on the weekend; my husband won't get on a bike. My dad does all the home repairs; my husband can't do anything. I understand it with my head, but my heart doesn't find it appealing to be with someone so inept. And then the guilt begins .... I am sure you understand.

May 29, 2016 - 5:01am
By May 24, 2016 - 10:03pm

Hi Everyone,
I just decided to join this group and quit pretending I'm happy. For the most part I am. Nice home, good friends and I get to see my granddaughter everyday. She's the light of my life. I care for her after school and have been her daytime caregiver for all 10 years of her life. She's not the problem. Eight years ago my husband at age 55 developed cardio vascular issues. He's had approximately 10 surgeries, developed neuropathy and was put on Norco and Percocet. They have affected his mind. He finally weened himself off of them after 7 years. Hasn't had any opiates for 7 months. He has no appetite and weighs 115 pounds. Used to be 180 at 6 feet tall. He's a skeleton. He has lost teeth and looks like he should be about 90 years old. He doesn't go anywhere because he has anxiety - caused by the opiates. I am so sick of this I could scream. Retirement plans don't exist - we do nothing together. I go alone when I can. My question is, is it normal for me to start feeling depressed and not care about myself like I used to? I didn't even brush my teeth today. That's when I decided I need to reach out somewhere and find out if I'm experiencing normal reactions to a never changing environment. I need help to get motivated and not to go down the tubes right along with him. I have 3 kids, 3 daughters in law and a 5 grandchildren to live for. I see some books in previous comments and I think I'll start there. Thanks for listening and I feel for all of you going through the same issues with your loved ones.

May 24, 2016 - 10:03pm
By May 24, 2016 - 10:01pm

Hi Everyone,
I just decided to join this group and quit pretending I'm happy. For the most part I am. Nice home, good friends and I get to see my granddaughter everyday. She's the light of my life. I care for her after school and have been her daytime caregiver for all 10 years of her life. She's not the problem. Eight years ago my husband at age 55 developed cardio vascular issues. He's had approximately 10 surgeries, developed neuropathy and was put on Norco and Percocet. They have affected his mind. He finally weened himself off of them after 7 years. Hasn't had any opiates for 7 months. He has no appetite and weighs 115 pounds. Used to be 180 at 6 feet tall. He's a skeleton. He has lost teeth and looks like he should be about 90 years old. He doesn't go anywhere because he has anxiety - caused by the opiates. I am so sick of this I could scream. Retirement plans don't exist - we do nothing together. I go alone when I can. My question is, is it normal for me to start feeling depressed and not care about myself like I used to? I didn't even brush my teeth today. That's when I decided I need to reach out somewhere and find out if I'm experiencing normal reactions to a never changing environment. I need help to get motivated and not to go down the tubes right along with him. I have 3 kids, 3 daughters in law and a 5 grandchildren to live for. I see some books in previous comments and I think I'll start there. Thanks for listening and I feel for all of you going through the same issues with your loved ones.

May 24, 2016 - 10:01pm
By May 23, 2016 - 11:05am

So, I'm new here. Just came across this page as I again sit in a hospital chair watching my husband sleep.
I have to be honest, this feels really weird for me to do but I have to try.
I am 36 years old and have been married for 16 years. My husband is the same age.
He was diagnosed with Crohn's decease at the age of 23. Ever since then it's been down hill in a way and a definite uphill battle. To make matters better... My 13 year old son got diagnosed with Crohn's as well at the age of 4. ( have a 16 year old who KNOCK on WOOD IS HEALTHY). To get to the point, my husband has had many complications that have been dealt with with steroids, shots of biological medicines, beside also getting surgery 2 times in order to remove bowl and some colon sections.
I FEEL LIKE CRYING EVERYDAY, and I DO. Now, May 23, 2016 sitting in this chair again dealing with SURGERY TALK AGAIN. I feel I'm about to just drop. BUT, I have to hold it together. My kids have suffered side effects to the stress this brings to the household. Now, this is my thing... Why does my husband always say to me that HE'S THE ONE LAYING ON THE BED, he's the one who is hurting and he's the one who has to deal with surgery. NOT US. THIS HURTS. I can't seem to agree with him in that. I know he is the sick one but I feel HIS ILLNESS HAD MADE ME SICK. I have so much to say I actually feel like I'm ranting. I need a minute to chill. Just writing this got my eyes watery. Gotta walk away.

May 23, 2016 - 11:05am
By May 15, 2016 - 10:13am

You stated my situation exactly! But what do you do to rid yourself of the anger?

May 15, 2016 - 10:13am
By April 14, 2016 - 9:11pm

I have been married over 25 years. What I was attracted to him about was how active he was. Now after 3 back surgeries from plumbing and welding, he is in constant pain and lives on Norco. He does not walk, which I think would be helpful and he just watches TV or plays on the computer constantly. I am very active but I am starting to get depressed because he is so inactive. He also calls in sick to work if he has any little cold. It is so frustrating. I grew up that you go to work unless you are puking. How can I deal with this without getting really angry? I am trying to be supportive but I end up comparing him to my dad who is 70 and is still active. I don't think he ever called into work sick. I feel like my husband is opposite of who I want him to be. It is so hard for me as a controlling person to accept this. I don't want to be controlling but I feel so lonely at times.

April 14, 2016 - 9:11pm

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

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