End Stage Alzheimers disease

JillBurt

Im new to this forum and am hoping to get some advice on how to proceed with my mother's care. She is currently in a MC unit near my home using a hoyer lift. She's totally bedridden and has pressure sores on her back. The Dr's are giving her pain meds but I think it's time for hospice care. She can no longer speak coherently and she just looks so lost. How do you know it's time?

Jeanne C.

It sounds like it's time. I'm so sorry your mom (and you) are going through this. Please call for a hospice evaluation. No harm can come from the evaluation and, if approved, so much help will be available. Sending comfort for your mom and strength to you.

M1

welcome to the forum, agree with the above. It's not too soon. she will qualify and it will be extra help and comfort to you, her, and the other caregivers. You don't need a doctor's order, just call a hospice agency yourself. You might ask the MC staff, they may have a hospice organization that they work with regularly.

vtech1951

https://alzconnected.org/discussion/68589/end-stage-alzheimers-disease

How do you know its time? time for what?? My MIL has been in the condition you are describing for over 2 years! With no end in in sight,,This disease has a way of going on and on and on, so in one respect, there is nothing but time!

ButterflyWings

@JillBurt I am so sorry for your mother's pain and for yours. Dementias are such a cruel disease group.

As an in-home hospice 24/7 primary caregiver for my Stage 7a Alz spouse, I believe it is never too soon for comfort care. Hospice has been our lifeline for more than a year with my DH's recent care team. He would likely still be here, still progressing but very, very miserable without their support. We have had falls, respiratory distress, UTIs and major progression -- bringing us near the edge of the cliff more than once with this agency and one before that. They are exactly the help our LOs and care teams need in the later stages.

I would encourage you to have your mom evaluated for hospice within the next 24 hours. If she does not qualify, which she likely will, no harm done. And we are here for you.

jfkoc

I think the time to call Hospice is when you first think about it and when you do start interview more than one agency.

GothicGremlin

@JillBurt I'm so sorry for both of you. Late stage is painful.

I'm with the others, it's time. When I called hospice for my sister, my thoughts were similar to what @jfkoc posted. I thought, "hmm, if I'm contemplating calling them, it's probably time that I actually call." So I did, my sister was evaluated and accepted, and she got great care. I will be forever grateful to our hospice team.

mommyandme (m&m)

Welcome JillBurt. It’s time to call in hospice now, even if your mom isn’t transitioning. With a dementia diagnosis, they can be on board for months or years. They’ll be a great support!

MN Chickadee

Hospice has some basic criteria for accepting a dementia patient and it sounds like she meets them. Things like not being able to ambulate on their own, losing weight, incontinence, few words, pressure sores, difficulty swallowing etc. With dementia they can accept someone even if they aren't sure death will happen in 6 months. Once you call an agency (or more, you can vet multiple) they will send a nurse to evaluate her and the agency decide if she qualifies. If for some reason she didn't, most agencies will follow her and check in every week until she does, but I'm fairly certain that wouldn't be a problem based on what you described. It's an added layer of services for her, you, and the facility.