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My experience with hospice when my mother died was one of the most unbearable parts of her death. My mother was in hospital with hospice. The hospice nurse would breeze in once every couple of days, do nothing, make me feel like s**t because I would take the few minutes to leave my mother's bedside when she was there, and then cheerily breeze out. When I left for a few minutes to take care of one of my children the hospice nurse literally said to me "Well, she might die while you're not here you know." A very compassionate person. The hospital floor nurses, however, were amazing so we all muddled through this very difficult situation.
My friend used hospice, again in hospital hospice, through a difference agency and the help and support they provided her was amazing. I never thought that hospice was something you had to shop around for but apparently it is. I know it is hard at this time to stay on top of everything but make you needs very clear to the hospice nurse when she comes and make certain that she'll be able to provide it. You will be held in my heart during this time.
Just want you aware that with in home Hospice, the family members need to be there 24/7 if Mom still living independently. If in an AL you still have staff to help. First thing will be an evaluation by an RN. If excepted she will then be admitted. A nurse will check in maybe every 3 days a wk. An aide about the same amount of times to bathe. If you need her there more than the hour to bathe the patient and dress them because u need to run errands, then you need to tell Hospice that. You will be responsible in administering meds, the aide, by law, can't do it. The Nurse should be available by phone 24/7. This is a stressful time. Make sure when the Nurse explains what is going to happen, u tape it or have an impartial person with you because you will forget some of what is said. We have a number of posts where either the Hospice didn't explain things or the person didn't understand. And if not happy with a certain Hospice, you can request another agency. If you don't care for a certain aide or nurse, you can request another one. Keep in mind that if Mom lives independently or in an AL, it is her home. As such, those coming into it need to respect that and her. They are there to do a specific job and that is it. They are not to boss her or family around. They are being paid by her Medicare. You have a right to question and ask questions. Hospice is for Moms comfort. She is not to be agitated in any way. So, if she doesn't like a nurse or aide, don't hesitate to ask for a replacement. Now, if Mom is hard to please, of course that won't work.
I’d try not to worry too much. If they are not helpful, I’d find another agency. Try to do some self care and know that others are sending well wishes and prayers! Hang in there and let us know what happens, when you have time.