06/06/2004 AT 08:00 AM EDT
What was once my father's office is now his bedroom. On top of the desk where he rested his elbows as sunlight slanted through the window, where he wrote his last letter to America announcing that he had Alzheimer's in 1994, bedsheets are often stacked – ready to be used for a change of the hospital bed where he now stays around the clock. When he is awake, which is not that often, he can gaze at the trees outside the window. The other day, my mother and the nurse who was on duty moved the bed to the open doorway so he could look into the back garden, where the sun was making prisms on the leaves after a morning of rain. "Did he seem to notice the different view?" I asked my mother. "I don't know," she said.
People often ask me how my father is doing. They want to know if he still recognizes me, if he still recognizes any of us. It makes me realize that my mother and I have been so protective of his condition since he became ill – almost a decade now – that it has allowed people to imagine he is still talking, still walking, still able to stumble into a moment of clarity. But it would be a disservice to every family who has an Alzheimer's victim in their embrace to say any of that is true, and I don't believe my father would want us to lie. Today, we are like many other families who come to the bedside of a loved one and look into eyes that no longer flicker with recognition. It rearranges your universe. It strips away everything but the most important truth: that the soul is alive, even if the mind is faltering.
My father is the only man in the house these days, except for members of his Secret Service detail who occasionally come in. It's a house of women, now – the nurses, my mother, the housekeepers. Me, when I am there, which is often, since I live only 10 minutes away. When my brother Ron visits from Seattle, or our older brother Michael comes over, the sound of a male voice seems to register with my father. He lifts his eyebrows. Is it recognition of his sons? Curiosity about this new male intruder? I don't know. We frequently arrange dinner around his bed. In fact, it has become the center of the house. Everything radiates from that space, whether he is awake or asleep. It radiates from the man whose life is thinning to a stream, yet flows and follows us even when we drive off the property.