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I'm at this point with my mother. However, she is on hospice, and has AML, failed conservative chemotherapy. She is about 80 lb. and and is at the end, but doesn't seem to want to leave. Her caretaker who is here everyday (I am now on FMLA, because it does seem like we may be at the end)....is a god send. She is truly god's angel -- she keeps my sanity. My mom hasn't really eaten in over 3 weeks, but is still hanging in there.

My .02 is to be aware that home health aides/caretakers ain't cheap and it isn't paid for ny medicare. My mom will most likely pass before I drain her savings, but the $600 per week bill still kills me every time I write out another check.

My hospice is in the form of a nurse who showed me how to give needed meds, and checks in occasionally. They happily gave me a DNR to complete, which I never did. They dutifully sent over a social worker who discussed funerals. And a bereavement counselor who played in my garden (I have a huge rose garden) for 2 hours and talked about her family. I know this is part of the package deal, but really? What I need is respite, and honest advice and guidance. Hospice can be wonderful, but its not the be all/end all to end of life situations. This journey is heart wrenching, emotionally draining, mentally draining and I know my life is never going to be quite the same for the amount of stress I've been under. Please know you're not alone, there are a lot of us on this journey. Someone earlier on this forum said (a few weeks ago) a statement to the effect of "these elderly citizens are in uncharted territory, no previous generation has lived so well so long and they are not financially, emotionally, or mentally prepared to have lived so long".
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