4/9/10

4/9/10

This week Dad has taken to making serious-sounding, but hard-to-interpret pronouncements. On Wednesday, he told Kate S. “I suppose, if everyone were satisfied, there wouldn't be much Italian at all, just music, music, music.” He also said, “I hope no one in my port is sinking.”

This morning Dad told Jaelynn “Stop pushing fruit on me, I am forbidden.”

Last night she and I took Dad to the opening of “Flowers of Peter Heinemann” at the Schlesinger gallery. The event itself was uncomfortable in several ways – it was very crowded and noisy, which was difficult for Dad with his hearing aid, and it was very hot, so Jaelynn and I were sweating with our long hair. There was, at least, an elevator, which was tiny, clearly made for one person, but it was the kind that has a gate you have to open from inside and Dad would never have been able to get out, so Jaelynn crammed in there with him, like a clown car. The paintings themselves, of flowers and the occasional cat, were gorgeous, but you could hardly see them with all the people in the way, and, of course, Dad couldn't see them at all. But our presence there was symbolic. As Peter pointed out, when he made his way through the crowd to us, he and Dad will have been friends for 60 years this year, and Dad has never missed one of his shows. On top of that, Peter and his wife, Marie, have stayed in touch despite his illness while others, like Inga and Mia, shy away.

On Tuesday I met with Michelle, the social worker in charge of the caregivers' program at SAGE. It got pretty emotional. I found myself saying to her that all I want is for Dad to never feel afraid or alone. She pointed out to me how unrealistic a standard that is, but I've always set the bar for myself very high, and this is arguably one of the most important things I've ever done. Her focus was on what's become of my life – and it's true that I've given up a lot, everything from working full-time to monday night ACT UP meetings to swimming to friends who don't get that if they want to see me, they have to come hang out here. In some ways, I kind of feel like my life is in a state of suspended animation, on hold until this is over, even though the end is nowhere in sight. I kind of cram what I can in around the ages, but the focal point is the 42 or so hours I spend with Dad each week. She pointed out that, though I tend to think of my caregiving as having started with his Alzheimer's diagnosis, it actually began with my mother's death, when I inherited the tasks she had done for him, like balancing his checkbook. It's been 11 years since my mother died.