I think that we've gotten to the point where mom needs Hospice Care, maybe palliative as a first step. she's currently in the hospital and I asked for the Palliative Care team to evaluate her, because I want their opinion. My brother has POA, all three siblings are health care proxies, but I do the case management. POA brother is unsure that we/he is entitled to say "yes, it's time for Hospice". Mom has a DNI and DNR and wants no extraordinary measures. In June, when her heart rate dropped and drs told us that she would die without a pacemaker, we pitched the decision into her court, because frankly I thought it was a bad idea, but my brother and SIL weren't sure. (Mom has vascular dementia, i.e., sharp as a tack except can't reason anymore and occasionally the govt is coming to take her away because she didn't' pay her income taxes in 1937; also, the volunteers who wheel the clients to Mass on Sunday mornings are all Jehovah's Witnesses and will possibly take her to another service). My brother is afraid that if she's on Hospice, we won't be able to get her repeated pleural effusions drained, that they'll take all her bp meds away, etc etc. Where is there good, factual information that I can sent him?

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Thanks for all the info! No, she's not going "out" to church...she's in a Catholic affiliated nh and they have Mass on site. But in the past, mom has refused to be taken ( it's down the hallway) because of her suspicions that the volunteers will take to a different service...just an example of her cognitive crossed wires.

She's currently in the hospital and very, very weak. I just don't see her bouncing back from this. Yes Pam, d*mn those pacemakers. I told my brother at the time that I thought it was a lovely way to go, before incontinence and further mental deterioration set in. But I'm not in charge. Gotta keep on keeping on. Thanks to you all.
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Dad died at home hospice, 20 months ago. Overall, Hospice was a needed service and they were very supportive. But, they had a plethora of rules I was not familiar with. Uou may want to ask questions around these points. Different agencies may have different rules.
The Hospital doctors and case worker made a few items very clear to me:
Medicare requires that a patient have a prognosis of 6 months or less, for a qualifying illness. If a patient improves, they can/will be released from Hospice. A patient can also be renewed for Hospice. Overall it is not intended to be long term.
No further medical care is provided for the qualifying illness. So a cancer patient would not be allowed Chemo or even Tamoxifin under hospice. So your brother’s fear that some of mom’s meds would be discontinued is fair. Ask Specifically.
I have heard some on this board state you still have the right to your own doctor, but I was told the Hospice physician takes over. I was OK with this, dad was in no condition to be taken to his DR.
They were emphatic; at home Hospice does not provide 24x7 care for the long term. They provide care while the patient is being stabilized (they said typically 1-2 weeks), and once death is imminent. Again, it seems some on this board have had a different experience.
They stated the hospice nurse is there for medical care, not custodial care. They reality was they were all very kind and never drew a distinction. Additionally I had a private caregiver, because the hospital and doctor had made SUCH a point of this. I had to prove and attest in front of witnesses that I was hiring Visiting Angels. I think the DR was just trying to strong arm me into admitting dad. Dad wanted to go home, and that was my mission.
I also learned family member’s presence is required for at home hospice. Mom is 80 and clear headed, so although she could not take care of dad once he was bedridden, her presence was sufficient. Because I worked, my nightly visits and weekend stays were not sufficient. Remember, we did not know if this would be a 4 week or a six month ordeal.
Dad went from stable to imminent death very quickly, so they never withdrew the 24x7 care. He passed away within about 4 weeks.
Emotionally, I will tell you my father prepared me, we had long talks, he stated last wishes, and he told me I had to let go. Three weeks into this, he was not cognitively there, just a far off stare. I let him go knowing I was loved unconditionally and appreciated, that I had been blessed to have him.
I hope you your mom is granted a clarity to share her family’s love. I wish you comfort and strength in this difficult time.
Take Care,
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If she is still going out, to church or whatever, she is not ready for Hospice.
Hospice means not more draining, no more BP meds, no trips to the hospital, no calls to 911, just comfort care in anticipation of death. You are not there yet.
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Since your profile says you're in NY, here's the Hospice and Palliative Care for New York's website. Be sure to check out the "Misperceptions" page as well. Good luck!
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