Feel much the same, Mark
It's the not knowing, it adds to the feeling of being in a state of limbo doesn't it. You can't do any of the normal planning ahead with any confidence, as things can stay the same for a long time and then, suddenly, lurch into panic mode again.
On the one hand the child in us (albeit grown-up) wants Mum or Dad to be with us for ever, because they always have been.
They are a hugely pivotal part of us, and of our lives. We don't want to think about the vacuum they will leave when they die.
On the other hand it's torture to watch them deteriorate & suffer - you wouldn't wish it on your worst enemy.
If I can borrow Taffy's signature tag,
Worry is like a rocking chair; it gives you something to do, but it doesn't get you anywhere.
I know I've not offered you any comfort, and I can't - apart from saying
No, it's not just you!
Best wishes