Those feelings of helplessness sometimes come witha clear reason. And sometimes they don't. One day last week when I had fed my mum her lunch at the nursing home, and taken her out of the dining room to get her upstairs for her afternoon nap, the blimmin' lift wasn't working. ( There are two lifts but my mum's chair only fits into one of them: the one which had broken). A nurse saw me taking my mum away from the lift and when I explained why, she laughed. I suddenly felt really angry and snapped at her that it wasn't funny, it was pretty bad service. She was immediately contrite and apologised saying that she hadn't meant to laugh. I sat with my mum for about another 45 minutes and then the lift began to work again. Took her upstairs and let them get on with hoisting and caring for her. I went and sat on the top of the stairs whilst they did this and just burst into tears. A mixture of relief and frustration and desperation.
For the last two days my mum has been pretty good: eating well and yesterday in particular, chatting very much like a former self. Tonight she was deeply asleep when I visited. She was comfortable and warm and had at least drunk reasonably during the day. I didn't rouse her, but left after an hour of watchfulness. I had no reason really to be upset but as I was shopping on the way home, I suddenly felt really tired and miserable. Wanted to stand in the Co-op aisle and cry.
I don't know if I am doing the right thing, but I just try to pre-occupy myself so that I don't get too overwhelmed, and I am also asking for help from a local counselling service.
It seems completely natural to want to cry and to mourn the constant bereavement that takes place during the course of this disease. It may have been worse today because my mum had sort of picked up a bit and then gone back into that really sleepy state and I never quite know what state she will be in next. It is rarely anything very positive.
On a final note, one of the things she said two days ago when we were having a nice chat was that there was always something nice to look at outside in the garden: the trees or the sky or the leaves. Remarkable that this echoes almost exactly what Eleanor said earlier "So I guess just hang on in there and take it as it comes - most times I do try to value those trees, sunshine, birds though to make some kind of sense out of it."
Thank you for starting this thread Grommit.
We are all sharing a very similar sorrow and the existence of TP is invaluable for helping us to share our sadnesses together with sympathy and understanding, but you have laid bare ( for me) a particularly poignant aspect of AD.