Updating the ISP
I found it interesting when the Case Manager was going over different points and mentioned that in the past Lyn was able to be alone for up to 5 hrs. I shook my head. Lyn saw that so she shook her head as well. She was asked if she was comfortable to be alone for one hour by herself. She said "no, not at all. I need mom here." Everyone looked surprised but I wasn't. So it's in there, officially, that she's not to be alone at all. We kept telling her that we want to be sure she is comfortable and taken care of. She would try very hard to be part of the conversations but wasn't able to. She would begin to talk about something far removed from the topic at hand but everyone was polite and listened. I would bring her back to where we were.
We will continue as we have been the past year. She has asked me a dozen times today what will happen to her. I assure her nothing will happen. She will continue with day-hab, continue with respite and being here at home.
She still is sleeping 10-14 hrs a night which seems to surprise everyone. Haven't they been listening?
I did ask the executive assistant from day-hab if it is possible for me to come talk to them about Alzheimer's. They jumped at the chance. She said they really don't know anything about this horrible disease. I said I am learning but want to share what I've learned the past 1.5 years. I just want to know that everyone who deals with my daughter, on any level, is as aware as possible of the disease. Be aware of the probable changes we face. They looked very surprised when I said that this is a terminal disease. It'll be set up for a Thursday since her respite picks her up that afternoon. I'll arrange for that to happen about an hour earlier than usual. I don't want her in the room so I can be blunt.