Thursday, March 6, 2014
I find myself at sea, tossed gently among the pearls of the South Pacific islands. The air is gentle and smells vaguely of jasmine or gardenia, even out at sea. I feel rested and relaxed, an unusual feeling for me these days. As always, after the second guessing and the resistance, I am always always glad to go, to be free, to adventure. This is what we should both be feeling. The flip side of this pleasure is the bad twin of sorrow...for him not to experience this and for me not to have him. "Everything is the same. Everything is different." Wisdom from a friend whose husband just died from this disorder as she described her days. These days he sits and stares, down at his hands, the floor, his lap. He fingers restlessly the edges of his pants, his bib, his fingers curled as if they hold something precious. He scrapes his spoon slowly over his plate, imagining gourmet meals and gooey, delicious concoctions, though there is nothing there yet. What do those vacant blank stares see? Those formerly warm, shoe button eyes, I called them....turned to dark discs of no one home. He asks tonelessly, in muttering gibberish, about the animals he sees, when there are none. My raging has abated somewhat and my actual sadness has increased. Dare I trust that I am gently sliding into the acceptance of this nightmare? I seem better equipped to figure out his needs, and mine, these days. I am planning for my own life, my respite, my fun. I am trying to care for him in such a way that he can find some pleasure in what is left of his days. Our daughter made a collection of her music and got him large acoustic earphones with which to listen. He shuffles around the house, his ears encased in the huge earphones, an occasional grin breaking through the Parkinsonian lack of affect. He will mutter, if you catch him grinning, "My daughter!"