Re: Kathy - on exiting

[Guest guest]

Yes - this is confusing and seems like a gray area - when to keep going to E.R.,

then hospital, then Rehab, then home, with helpers - over and over again. And

Dad did get better, so I questioned - why is Hospice coming to the house instead

of the regular CNA's ? and the R.N. said -he wouldn't get better this time -

The doctor makes a determination, somehow, that the person is declining and in

the process of dying. She said it is like rungs of a ladder - you go down a

step - then things level off and he learns to walk again, and things are sort of

OK. Then the next year, he goes down another rung of the ladder - then levels

off and he learns everything again and again its OK - but he is going down

incrementally. I always thought -- everything will be alright, then the person

just dies. But I learned that it is a process and it does down in levels - then

there is a plateau for a while, then down again, then plateau and on and on. It

isn't just a sudden dying. At least this is how it happened for us. The thing

I didn't understand is how do they say - OK he isn't getting better this time ?

Then they say - " don't call 911 - call us " and all that stuff. I know one of the

most important criteria is weight loss - R.N. explained it like this - no matter

how much he eats - his body is not metabolizing the food and he will just get

really, really thin and weakened. This is the way the human body is designed ,

I guess to facilitate the dying process. And then the not being able to swallow

and going unconscious.

I wondered all this stuff and no one could quite explain it, so I was quite a

nervous wreck. I didn't really want to go along with the plan, and wanted to try

to give him water when no one was looking ! But I didn't because there is no

turning back, I guess. Everyone has to be on board in the family, and everyone

kept trying to keep me on board and understanding this and telling me its

natural. It was beautiful and sorrowful all at once. I now feel like I have

PTSD because I am re-living the details and trying to process it.

LBD really is awful and we have to do something about it.

Good luck to you Kathy and others dealing with this.