Monday, August 31, 2009

Nearly the End -- Again

When my maternal grandmother first moved to her nursing home she hated it. Every day she said she was going home. Eventually she refused to sleep in her bedroom. The staff would find her sleeping on couches, in chairs, etc. I started calling her every night just before bed time to talk to her. I always told her she needed to sleep there tonight and tomorrow we'd talk about where she'd sleep. This went on for months, until one night I called and she didn't talk about going home. I stopped calling shortly after that.

It's like that with Alzheimer's. One day you remember something and the next day it is gone. We went through all the phases, just like they talk about in all the articles and books. The problem is no one can fully prepare you for how terrible it is when your Grandmother is in the mean phase and she punches you or hits you with a book when you are not looking. Nor can they fully prepare you for the first time she doesn't know who you are.

It drags on and on and on. Gram has been in her nursing home for more than a decade. Trust me when I say no one thought it would go on this long -- nor did we wish for it to drag on this long. Yes, I know I'm saying I wish my Grandmother would die, but if you saw her, you'd wish that for her too. No one should live like she is now.

Recently we received the call that Gram was being moved into hospice care. She officially moved into what they call end-stage Alzheimer's. The hospice staff talked about providing palliative care so she would be comfortable, and she's already DNR, so that's not a concern.

This was a couple of weeks ago and we're still in a holding pattern. The stress of this is beginning to show on my Mom. She was sick Saturday because she visited Gram and found her nearly comatosed, with her eyes and mouth open. It was too much for her. The staff said Gram hadn't eaten in two days and they expected her to fall into a coma shortly. In my mind, this meant is was nearly over. There was no joy in this, just relief.

Then Mom visited yesterday. The staff told Mom Gram drank about 1/2 of her vitamin-enriched protein drink and ate a few bites of food. I nearly snapped. I just didn't understand why is Gram still getting the vitamin-enriched protein drink? This was meant to keep her healthy and keep her weight stable. I realize they cannot stop giving her food and beverages, but why not just plain water to keep her hydrated and stable? Someone please explain the benefits of giving her something that will extend her life? Please? Anyone? It's not a question I can really discuss with my Mom as she's about at her wit's end now. This type of conversation would put her right into a nervous breakdown.

Given that this year we've already buried an in law's mother and my paternal Grandmother, end-of-life weighs heavily on my mind. We're "older parents' as the demographics experts politely say. We haven't formally put all our wishes into writing, but every time something happens, I tell everyone my wishes -- my husband, siblings, friends, etc. I don't want anyone to wonder how I want my final days to be handled. If there are any dissenters, I've told the others they need to make sure my wishes or honored or I'll come back to haunt them. Yes, it's the Type A in me that wants to be in control, but I also want to protect my husband and daughters.

While I realize it's not entirely in my control, but you can be certain I'll do my best to make sure the girls don't go through this with us. I think it's one of our jobs as parents to try to put our lives in order so they can go on with theirs as quickly as possible. One generation suffering through this is enough.


Julie K said...

In the end stages of Alzheimer's she'll eventually not be able to swallow... and then basically starve to death (most likely in a coma). It's not pretty... my father-in-law hung on and on and on. I understand the slippery slope of assisted suicide, but it seems to me we treat our pets with more compassion when we put them to sleep than we do with those that go through end-of-life stages like this. I'll pray for her to go quickly... for her sake and for you that are in the holding pattern (it does take it's toll on the loved ones).

Jacque said...

I lost my dad to alzheimer's just about 1 year ago...and even though I wished for him to go, I still miss him dearly. Peace be with you my blog it is not an easy road.