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

By Susan Cody 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 LoriM 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 Jellyhellybaby 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 vhakim 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 vhakim 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 theodora 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 LoriM 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 LoriM 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 Susan Cody HERWriter Guide May 25, 2016 - 5:13am

Hi Peggy

You are completely normal. I am sorry this has happened to you. Your husband's illness is also your illness.  His sickness is yours - except he gets the doctors and the meds and you are supposed to be the "strong" one at all times.  You are human and this isn't possible. 

Peggy I am glad you have family and grandkids to live for. Never forget that.  But I think you need an active support group for caregivers - talking with those who are walking in your shoes and can give you advice and just be a sounding board for your frustrations. 

Do a google search or ask or your doctor's office, they will probably have lots of information for you.

Please stay in touch with us - you sound very kind and are very brave.

Best,

Susan

May 25, 2016 - 5:13am
By Peggy B 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 Peggy B 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

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

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