I don't want to go too much off-topic here, but since you were so kind to ask, Jess: Karen understands that basically, her life is over. She'll never again dance, go out with a guy, maybe even feed herself or use the bathroom unaided. It's exceptionally sad, but she has I think accepted it. She is so used now to being in bed I doubt she could really envision any other state of being. Also she gets really tired really quickly, so that when we went to the dentist last week and we were, in all, say about two hours for her in the wheelchair she was dying to get back into bed, whereupon she fell promptly asleep at about 2pm. But then she does this anyway. It's a huge struggle for her to remain awake at times when her body has become accustomed to being asleep.
Example: when a doctor or other visitor is coming up to her, and they say they'll be there "in the afternoon", she may have to wait to go to sleep until they've arrived and that could be an hour, two, three past her "afternoon nap time", and she finds this really hard. I think, although she perhaps doesn't quite grasp that there's a good chance this disease will significantly shorten her life, she fears more my dying before her. Frankly, so do I, and it's a constant worry, but what can you do?
It means of course I can go nowhere, but hey, so what? I wouldn't be able to enjoy myself anyway if she were at home waiting for me to come home; I'd be afraid she'd need me for something. I mean, look at it this way: something as simple as her water bottle falls off the table. Nobody there to pick it up for her so she has to remain thirsty till I come back. Under those circumstances, could you leave your sister on her own?
But her mental attitude is really good, despite everything, and our three cats help to give her something to focus her attention on. She once struggled downstairs to rescue Ritchie who was being beaten up by a neighbourhood cat. She then sat at the bottom of the stairs and when I got back (from the vet with one of our other cats, as it happens) I had to call the Fire Brigade to get her back up the stairs to bed. That's how much she loves and is devoted to our kitties.
Seriously, thanks for the interest and concern. It means everything.
