“I’m 75 years old and I was diagnosed about a year and half ago,” says Milch. “It’s a slow unfolding as you become aware of the compromising of your faculties. And that becomes increasingly dramatic and distressing. And finally, you can’t turn your back on it any longer — that’s been the story with me. [It’s] forgetfulness of all different sorts, which compromised my ability to meet my daily responsibilities. Finally, there comes a period where you’re fighting off what is clearly a change and you have to, if you’re going to be responsible and meet the concerns that other people are beginning to show, you have to encounter all of that.
It’s an increasingly distressing sequence of events, but finally there’s no turning your back on it. You kind of fight a rear-guard action. You look at it as a series of accumulating skirmishes where you look at the challenges for the given day and your hope is to be able to get through without acknowledging what is privately an undeniable fact. It’s a demoralizing accumulation of irrefutable facts.
At a certain point you make so many adjustments to conceal or circumvent the effects of the illness. And then, if you are to retain any sort of dignity, you have to acknowledge that you’ve changed. And if you’re going to keep your dignity you have to make adjustments to the disease, and that takes up more and more of your conscious life and emotional life. I’m grateful that I’m part of a family which has been generous and brave in trying to help me. I try to work every day, to write. Each day is about coming to terms yet again with the compromising facts of your condition, and you finally get to the point where you have to make concessions to what’s going on with you. And you try to embrace your families, the concessions that they’ve made or are trying to make. In some ways you could describe it all as an accelerating pace of compromise.
I live in a facility which is organized around the recognition of and adjustment to what is happening and what is continuing to happen. And you just learn to live with it, as best you can. It’s an accelerating deterioration. [For me], it’s about being a continuing part of the community, trying to be a source of support and strength as long as you can to your family. And doing it all as you live into the recognition of the concessions that you have to make increasingly, day after day.”