So in the hospital, my mother was in kidney failure. The last couple days after stopping vancomycin for about five days, her GFR had come up to 19. That’s the most recent Number and then they stopped drawing labs because we placed her own Hospice. We consulted with palliative care team. They wanted to do a feeding tube and we said no. They said she had advanced dementia. That was unmasked by her hospital day, etc. So we went with comfort care. She spent two extra days in the hospital because there were a lot of hassles with the transport here to a local skilled nursing facility. But we got her in there late yesterday evening.we went to see her today, and she was sitting up in her wheelchair, but calm. They are giving her a scheduled dose of Ativan and she’s been nothing but easy and pleasant. But she went from failing a swallow study at the hospital to easily holding her own cup, and swallowing punch that has been thickened. She still doesn’t really eat. Hospice nurse told me she fed herself a few spoons of purée breakfast. We were there at lunch and it does not seem like she ate anything. We were briefly called away to the business office, but upon coming back, the food looked untouched.
she is much more verbal than previously. Her speech is no longer garbled. She does say some things that are still not true, like referencing being at that facility before when she’s actually never been there. Or looking out her window at a pond and saying there was some sort of animal with a made-up name. Or holding onto her stuffed dog and kind of enjoying it like a child would yet not asking about her real life dog. She has a Foley catheter that is draining some tea colored urine. She had urinary retention at the hospital, which is why she still has a Foley.What if she gets taken off hospice? Now we’ve sat here and only halfway treated her spinal osteomyelitis three weeks out of six of the IV antibiotics. But she got taken off of them for renal failure and now she’s on hospice.what if her brain turns out to be just temporary delirium and not actual advanced dementia, which is what they kept saying at the hospital. And I kept telling them she always gets wacky cognitively with hospital stays. Admittedly this was the very worst. I’ve ever seen her.
what if she no longer qualifies for hospice, passes as normal cognitively, starts demanding to go home, does not qualify for long-term care, Medicaid, etc. I made a self-pay payment today from her account for the last two weeks of September. I can’t even imagine the trouble that would happen if she realized that we had spent her money on her staying there. Tomorrow they are giving her the BIMS test. But I am super unnerved because she looks a whole lot better than she has been looking. She is still not yet walked since being in the hospital. Has not attempted to probably due to the happy drugs Hospice is giving her. Oh and she also got off of oxygen while still at the hospital. Her stats are in the low 90s, so I guess when the pneumonia resolved her oxygen levels rose.she has been some level of mentally altered since about June 24. But today she looks so much better. It’s a drastic difference from the last few days.
Your mom qualified for hospice because she is dying, not because she has dementia. It wasn't the confusion that qualified her, it was all the other stuff.
It is VERY common for people to rally a bit when medications are removed. Especially when kidney function is compromised.
Take one day at a time, you can always take her off hospice but, she is never going to be well enough to go home, even if this isn't just a rally. She can't afford 24/7 care and you are unable to provide it, that is what you need to remember when you are worried about the what ifs.
Take care of you during this difficult time.
Perhaps some of the other (wiser) forum folks can add their input on this specific hospice subject?
I understand how frustrating and even frightening this can be.
My dad (92) is on hospice at his home, and at least twice now he was in bed, struggling and sleeping, for two days straight, I thought for the last time. We called the hospice nurse to come as soon as possible, which was the next day.
I live out of state and the caregiver asked if I would be flying in. My other brother wondered if he should change his work plans and fly in, too. My brother (the POA) who lives near our parents asked if we were all on board with what to do next. We thought this was it. Kind of an all hands on deck situation.
Then the next day my dad was out of bed, at the table watching a documentary, as if nothing had ever happened. The weekend hospice nurse showed up with a ‘why am I here?’ look on his face.
This can be an emotional roller coaster. Good days, bad days, horrible days, questionable days, what just happened? days, am I going crazy days.
We are all thinking of you and sending positive thoughts your way.
Try to relax a bit, I know how hard all this is.
Hugs!
Whatever happens , you remain that she can not go home and that you can not care for her . I doubt she will get so much better that she could actually go home .
Remember delerium uncovered the dementia that is there . I have to say some of these mini cog tests are useless depending on the type of dementia .
My mother’s memory was still good with vascular dementia . However her executive functions were bad , her reasoning and decision making abilities bad . She was not safe home alone .
enjoy her pleasant demeanor while it lasts.
My father (no dementia) is on Hospice care for CHF and a very weak heart. He has had some bad days then is perfectly fine the next day. We prepare for the end of life one day then the next day is fine. His 6 months is due in September and I'm worried about "graduating " from hospice. Then do I go back to the same in and out of hospital again. Then take him to all the different doctors again?
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then there's my mom( in memory care) who is slowly slowly slowly declining.
the rollercoaster is maddening!
But when the end came, it came quickly. She began to get loopy, had started seeing people who were not there. She lost a massive amount of weight over a short time. She stopped eating, was cold all the time. And then her skin became mottled in some areas. The big decline took about two weeks.
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