To be totally honest I'm somewhat amazed that Mom has made it this far, in fact health-wise she's probably as solid as she's been in the last three or four years. She's bed-bound and always will be, which presents its own challenges, but we've established a pretty good routine that's been working so far. Of course when you're FT caring for an 83 year old woman who's partially demented and bed-ridden it can get tough, but to be honest as hard as it's been IMO I've managed to hold things together fairly well.
For the first several months the biggest problem I faced was my inability to to find anyone to watch after her when I have to leave for any length of time. She has three granddaughters who lived close by but they've been less than useless. In fact, on the rare occasions when they have sat with her it was honestly more work for me than it was worth, as any little thing caused them to become totally unglued. BTW, we're talking about 28, 22 and 18 year old women here, not children. I'd leave and mere minutes later they'd be peppering me with text messages..."grandma is saying weird stuff", to which I'd reply "yes, if you visited more often you'd realize that's the new normal". Over the last few months they have scaled back their visits a lot, always giving me stupid transparent excuses but to tell the truth in a way I'm almost glad, as I don't really trust any of them in a crisis anyway. They'll regret not taking a more active role with their grandmother when the will is read, that's all I need to say right there about that.
I have someone who does sit with her on occasion and it's worked out well, although she isn't available all the time. Getting away from caregiving once in a while is vital IMO and although I haven't been able to take any sort of real break, even a long evening out does wonders.
I don't know if anyone else experiences this phenomenon but Mom almost seems to have a sixth sense that buzzes whenever I'm at my most relaxed or engrossed. For example, if I dare to take an hour nap or if there's something on TV I really want to watch, that's when she's suddenly too cold or too hot or hungry or thirsty or spills her water on herself or (shudder) "nature calls". For example, I'm a baseball fan and last season my favorite team made the playoffs. During every single game of a five game series she "had a movement" in the fifth or sixth inning like clockwork and on the off days, nothing. I swear it was like she knew.