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My husband is in late stage dementia, and for almost a year we have had Hospice (it was suggested by his primary doctor, though I feel perhaps we were premature in signing up). The nurse visits once a week, makes note of his vital signs,gives advice from time to time, makes note of meds that need to be refilled -- and then stays about two hours chitchatting about things that are not remotely related to the illness. I believe she is doing this to provide support in a friendly way, and I appreciate her effort, but to me the visits are way too long. She could easily be in and out in half an hour and I feel she overstays (but I don't want to be petty by complaining). The aide who comes twice a week to bathe my husband does what she came to do and leaves, which is more what I expected from the nurse (and social worker who sometimes comes with her). Because of my husband's illness I am way behind on so many things and would rather spend the time catching up, rather than visiting casually with the nurse. Also these visits sometimes coincide with times I have arranged for a family member to come while I run errands. I'm beginning to wonder if I should drop out of Hospice, at least for a while. I'm sure I could be our "case manager" myself -- keeping tabs on vital signs, taking him to Urgent Care of his doctor when needed, etc. After all, I do most of his actual care myself and could hire an aide to come to shower him. I also find myself questioning some of the Hospice mindset regarding what can and cannot be done for the patient, and am feeling that perhaps I'm not 100% Hospice material after all. Has anyone had these feelings? Has anyone dropped out of Hospice during the months that nothing much changes from week to week with the patient, intending to go back to Hospice more toward the obvious end (or never)? Would be interested in any comments -- either to set me straight on an incorrect attitude, or to agree with my feelings. To hear input from several would be so helpful! Thank you!

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if we cant switch providers hospice is going to get fired from our home. they just fail to understand that we are in charge in this home and if you buck their directives they will narc you out to aps and / or your primary physician. they are forever trying to steer my mother towards an institution too. clearly it ups the level of care and / or they get cash kickbacks from the NH. they are pushy, smartmouthed, all knowing and were sick to death of them. ( southern care ) ..
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