As a child I mourned the loss of frontiers. It seemed to me that there were no adventures into the completely unknown left, nothing where you met challenges never before encountered. During my career as a physician and especially during my fifteen years at Joseph’s House (our hospice for the homeless), however, I began to recognize the last stages of death as a true adventure into the unknown, a frontier that never disappeared. It’s not that no one has ever died before, of course, but no one has returned to give us a map, so in our own dying each of us enters into the unknown.
Alzheimer’s, too, is an adventure, the last stages of which are shrouded in mystery, and each of us with this disease will explore an unknown wilderness. There are lots of people who’ve gone this way before, of course. Of the 40 million US residents over age 65, almost 5 million have Alzheimer’s. And although I write this blog to dispel some of the mystery, ultimately neither will I be able to tell others what the last stages are like. In a recent post I wondered whether I’ll be conscious toward the end when I appear to be completely out of it and, if not, what it will be like. We don’t know.
My using the word “adventure” to describe my journey into the darkness might seem like a form of semantic denial, soft-peddling the likelihood of future suffering for me and people close to me. I don’t believe I’m in denial, but even if I were, does that change the reality that this process will be an adventure?
Perhaps we don’t think of Alzheimer’s as an adventure because we want happy endings and believe that the word “adventure” applies only to successful adventures, where the hero faces enormous dangers and suffering but eventually returns to tell the exciting story. But what if the hero does not return from the mountain; or does, but without having reached the top; or does reach the top and returns, but emotionally scarred or physically damaged? Was it any less an adventure?
I’m grateful that I can still sense an excitement. Growing up, I felt cheated of uncharted territory. But each of us with this disease must explore it for the first time; each of us faces a unique adventure.