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My mother is in late stage C.O.P.D. and as I mentioned in another post, she has reduced eating and drinking and stopped all treatment and medication. I moved her to a different bedroom, so she can have a real bed (not a hospital bed) and no sign of all the medical treatment she had and a break from her life as a "patient" in the other bedroom. But, I've been cleaning up her old room and noticing all the things I could have done better! I had put an extra pad on her hospital bed, but I laid on it, and no, it was NOT soft enough. I never got around to changing the lighting to be warmer yellow light. I never made enough storage for her and can see she had 2 baskets of clothes that she had to bend down to access. I realized the windowed door that goes to the deck that gave her lots of light also let in cold air in the winter. Well, I think I was busy doing a great job with lots of hospital visits, and shopping, cooking and nursing her and keeping her company. I stopped working and seeing friends. But, I feel haunted by this short list of things that could have changed her experience of the year she spent here in my home. Why didn't I get around to those improvements? She is someone who (darn it) won't complain specifically about what works and what does not. I always had to guess. Even now, she is cold all the time. I bought her a very soft, warm fleece jacket that she kept telling me to take back. "Don't spend your money." I've learned my lesson. I did not take it back to the store. I told her she could wear it or not; it was my need for her to have something extra warm. Has anyone had the experience of "why didn't I do more" even if you did a lot. I go through the same thing about Dad who passed 8 years ago.

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I think the questions to ask yourself to rationalize the guilt you feel are:

1. When you were engaged in the various tasks you mentioned, were the thoughts you now recognize apparent then? Or did they arise later?

2. At the times you cared for her, did you do what you felt was necessary, rather than everything you might have done? Did you neglect her health in any way?

3. Have you identified ways to change these situations in the future, providing that you have the time and energy? Or would it take too much out of you to extend yourself more?

4. Do you feel you've done the best you can for her, under all the circumstances?

I think guilt is a major part of caregiving; it's like holding several jobs at a time and the best we can do is prioritize on a medical, safety and emotional level, but even then not everything can be addressed. A lot of caregiving and what we think should be done, and what we wish could be done, is imagined in an idealized environment. But life isn't always ideal, so we deal with what we can do and try to balance it with our own need for self care.

And we see the events and suggestions you describe as mid-course corrections to be implemented if we can. We try to look forward, learning from past events, but recognize that beating ourselves up serves no purpose.

I keep telling that to myself all the time.
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