It is so frustrating to feel myself getting weaker and weaker. There's so little I can do by myself and when I try I realize quickly that it is beyond my abilities, and it takes longer and longer to catch my breath. I now brush my teeth in bed, using one of those little curved basins, as standing up at the sink without holding on just wears me out. I really don't see the point in going on this way, and I wish things would just be over with.
But, at the same time, there are still things to look forward to. I got an e-mail the other day from Joseph and Susan Rogers, who are organizing this year's Alternatives conference (http://alternatives2009.org) in Omaha, saying that I am receiving an award at the October 29th luncheon, and wanting to know if I could attend in person, or else send a video or a letter. I asked them to look into the logistics of the airline transporting me, my scooter, my oxygen, and Marty as my PCA, and to let us know what could be arranged. It would be great to be able to go, especially since we had planned to go to last year's conference, in Buffalo, which we would have driven to (making an overnight stop halfway), but then I got too weak to stand up and ended up in the hospital on IV antibiotics. That was my last hospitalization, which ended up with the referral to hospice. But I had told so many people that I would be seeing them at Alternatives so it was a big disappointment all around.
Barbara, the physical therapist, was here earlier, and did her usual laying on of hands which I find relaxing and energizing, and then Mindy, my volunteer, came, and we had a nice chat about all kinds of things. I had accidentally told Tim to come at the same time, so he stopped by and arranged to come tomorrow instead. And on Friday Laura and Dorothy are coming for a visit.
I find myself saying so many of the things my Dad used to say in his final months--he used to talk about feeling weary, and now I know just what he meant. Everything, even the most mundane activity, like going to the bathroom, becomes a major production. When someone would point out some nice upcoming activity he would say "hallelujah" or "whoop-de-doo," hating to be diverted with something that felt so minor in the grand scheme of things. And although he was eighty four when he died, and I'm not quite sixty five (my birthday is October 30th), I know just what he meant when he would say, "I've lived too long." I always planned to live to a ripe old age, but that was only if it was an active, busy life--the life I used to lead, the life I loved.