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If you haven't already, you must read Lisa Genova's novel, STILL ALICE, told from the point of view of a Harvard linguistics professor who gets early onset Alzheimer's disease. Genova has a PhD in neuroscience, and has researched thoroughly, but her real talent is making us laugh and cry along with Alice and her family of caregivers.
I found myself caught between identification with Alice and her husband, John. Alice wants to savor as much life as she is able to before she no longer recognizes the people she loves. John finds it heartbreaking to watch Alice forget how to do simple things, like turning on the TV. And he does not want to give up his passion, which is his work.
I find myself in a similar position. I do not want to give up my passion, which is my art and the thriving business I've made of it. I also find it exhausting and heart-breaking to spend my time watching Adrian trying to find his glasses, tie his shoelaces, turn on the TV, etc. I feel that Adrian needs more from me than I can give.
One of the great things about STILL ALICE is that life is still worth living for Alice even after she no longer recognizes her children. She appreciates them as people: "the mother" and "the actress." She finds joy in being rather than doing. That's something I wish for myself right now.
