I'm new to this support group... just saying hello. Caring for my husband who has COPD, emphysema, on oxygen 24/7, and more....

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He's also nearly blind and uses a walker. I retired a few months ago due to his declining health. I have been providing caregiving to my husband for more than 20 years now (Cardiomyopathy in 95, had a heart transplant in 1997) in one fashion or another, but the last 5 years have been the toughest. Some days are good for me, many days I have anger and resentment because of the long term care he has needed over the years. I get care in at times, and have had some 2-3 day respites that have helped but sometime keeping a good attitude is very difficult. Actually, most of the time it's hard to keep a smile on my face! Glad to join this group and vent some. Hi all!


Beyondburnout1, welcome to the forum! I'm sure you will read many things here that you can relate to. There will be many questions that you can answer out of your long experience. And feel free to ask questions yourself, or just to vent sometimes.
Hi Beyondburnout and welcome! Your husband has been so blessed to have you caring for him for the last 20 years. That's a long time. It's no wonder you have a hard time keeping a good attitude, anyone would! Hopefully this site will give you the support and information to continue on your journey.
Remember to take care of yourself!
Thank you for your feedback! Just knowing I can come here and vent or help others out with our lives as caregivers is good. :)
Oh, and I forgot, he's also on kidney dialysis ( 5 years now )......that probably has been the toughest thing for him and me. :(
WOW, I am tired just thinking about all of the balls you are juggling! Is it possible for you to plan something fun while he is at dialysis? that has to be at least a 5 hour block of time 3 days a week. A nice long nap one day a week, a movie on another day? Errands on the 3rd day? For me, getting my head cleared would help and go a long way towards making me feel 'normal'! At any rate, welcome to the forum.
Beyond, do you ever get to the point that you ask yourself if he would be better cared for somewhere else? I did with my mom. I just decided I had enough and was resentful and angry a lot of the time. That was not good for mom or me.
Hi beyondburnout1. Welcome. My daughter found this site for me In March. It's wonderful.   It takes a little time to figure out how to send personal messages and hugs. But it's been a so helpful to me.   You great advice here and a lot of support.    Again,  Welcome
Beyond burnout, Welcome.
My first impression is what a strong man your hubby is to have survived all the things he has. It is really amazing that he has survived 20 years with a transplanted heart that is very encouraging to hear.
I can see how difficult it is becoming for you especially since you are home with him 24/7 these days and have to go with him for dialysis. I expect he likes you to stay with him. If you can manage to hire help for at least one day each week I think it would lighten the load a lot.

Have you considered any kind of care facility? I think they are exceedingly expensive Nobody, certainly here, would judge you if you decided to take that route The kidney failure would certainly qualify for Hospice if you feel he is ready to take that step. He may or may not be able to continue the dialysis so that is a question you should ask hospice and your insurance about that.
My hat is off to you! I’ve been caregiving on & off for my husband the past 7 years. The last year has become consistent as his previously mild dementia moves toward moderate & his heart condition worsens. I work hard, like you do, to keep a positive attitude & be grateful but some days I’m emotionally spent. I’m guessing you have days like that as well. It is my 1st day joining this group & just knowing I’m now no longer alone is a help. Thank You All

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