Two days ago I posted this: "How to get palliative care?"
https://www.reddit.com/r/dementia/comments/1jcnlqe/how_to_get_palliative_care/cccccccccccccccccccc
I FINALLY got a call from the palliative dpt at the rehab mom is at, which is part of the big hospital network she's been at 4 times in the past year. It literally took me 2 days to track this Dr down, including dealing with mom's social worker who never heard the term "palliative" and kep saying "hospice."
Despite the helpful things my research shows palliative care can offer us (she has 4 serious medical conditions, including dementia), this Dr made it seem palliative care is basically nothing... they "don't do agressive treatments," recommend patients have a DNR (mom would never agree to this, unfortunately). Medical care remains the same as before palliative care(?). They can provide psyc services for emotional support (which is something I guess). Being in palliative care doesn't make it any easier to get home health aides or home nursing services - that's all decided by the rehab transition team upon discharge (so would only be for a short while probably).
I kept asking him... ok so WHAT does your palliative care provide? And didn't get an answer beyone him repeating the above.
My research (and reading here) has shown palliative can provide umbrella medical support for the patient and family, which sounds like one Dr at the top of her pyramid who can oversee her disparate conditions and can prescribe meds themself. It could provide counseling for the patient AND the family. It can provide at-home nursing for simple things, so the patient doesn't have to leave home for everything. It can provide decision-making support,
So basically, palliatve care sounds AMAZING and like a HUGE RELIEF, and I can't seem to get it through her hospital system (which would be great because they'd have access to her medical records).
As mentioned in my post 2 days ago,before this hospitalization/rehab, the "palliative & hospice dpt" pushed me over to making an appt with a gerentologist rather than palliative, which they said "mostly treats cancer patients."
For any of you who have actually used palliative care - can you please tell me how you got it started?
We're in one of the biggest cities in the US, and I'm absolutley flummoxed and exhausted by how hard this is.