“She is leaving him, not all at once, which would be painful enough, but in a wrenching succession of separations. One moment she is here, and then she is gone again, and each journey takes her a little farther from his reach. He cannot follow her, and he wonders where she goes when she leaves.”
― Debra Dean, The Madonnas of Leningrad
My father – my brilliant, self-taught, highly educated father – has Alzheimer’s Disease. When the doctor told him “… you have Alzheimer’s,” dad replied, “But I can’t have Alzheimer’s, I have a Master’s Degree.” After the diagnosis, he went to his go-to place – immediately denial. Dad always had a gift for seeing the sunny side, to the point of ignoring the thick, dark storm clouds hanging above like a Damocles’ Sword. He lends himself so easily to the surrender of acceptance. I used to find it jarring. Now, as I attempt to process the reality of his illness, I find myself in awe. It seems like such a beautiful, rare wisdom – this pure form of acceptance that has us surrendering to the forces of nature and the universe we cannot change.
In the wake of discovering dad’s diagnosis I dug deep, poured over as many books as I could find about Alzheimer’s dementia. I wanted to know, what did it feel like for dad? What does it feel like, when the Alzheimer’s fog begins to erode, where does the person go, in that labyrinthine brain? It seems like they journey to beyond a sort of event horizon – they cannot see out, we cannot see in.
Because we cannot follow them on their journey through dementia, does that mean they no longer exist, you know – socially, psychologically? Many think so; I disagree. I believe we can still have an identity without memory, without any knowledge of our personal history. When we forget the names and the faces of our children, spouses, siblings, friends, we still remain ourselves, if only on some hidden level. People afflicted with Alzheimer’s remain people, despite the fact that they remain shrouded. The known remains, nestled deep within the unknown.
I can feel dad slipping further and further into the shroud of memory loss. I hear it in his voice and sense it in the awkward pauses on the telephone during our conversations. And I wonder what about the machinations of his mind, underneath the plaque of the disease. I imagine that somewhere deep inside the labyrinth of the self sits a tiny box containing the soul, the undefinable substance that animates us all, and that the soul remains uncorrupted by the ugliness of disease that ravages our bodies and minds. And that all those lost to us are not lost at all, merely out of view.