Call me morbid, if you wish, but I possess an unwavering interest in suffering, pain, and death. I do not believe that my interest is unhealthy. After all, death is the most certain reality that we must all eventually face. No one is exempt. Death should come as no surprise to us, and yet, often it comes as exactly that.

My interest in suffering and death leads me to some interesting books. Recently, I read Losing My Mind: An Intimate Look at Life with Alzheimer’s by Thomas DeBaggio. It is DeBaggio’s first-hand account of his slide into the cold, impersonal silence of Alzheimer’s disease.

It is the saddest book I have ever read.

At age 57, DeBaggio was diagnosed with the disease. Because he waited so long to be tested, his initial diagnosis came back as “severely impaired.” The relatively early onset of Alzheimer’s – Alzheimer’s usually targets those in their 70s and 80s – practically guaranteed that his degeneration would occur rapidly.

Upon learning of his disease, DeBaggio immediately began to chronicle his experience. The book covers about one year of time following his first diagnosis. By the end of the book, he is no longer able to write. We are thus left with the record of a man fighting a losing battle to maintain his memories and identity.

The story is told in a jumbled and mangled mess of interweaving threads of personal narrative and official research reports. DeBaggio jumps from the present to the past to italicized statements of tortured agony, presumably written during the worst stages of the disease. Interwoven in the mix are a series of official Alzheimer’s research documents. I assume that DeBaggio (or the editors) wanted to reflect the haphazard and scattered thoughts in DeBaggio’s head. If so, they succeeded.

The hopelessness of DeBaggio’s condition is presented in the opening pages. “This is an unfinished story of a man dying in slow motion” (6). Alzheimer’s is nothing short of a death sentence. Later in the book, as the disease progresses, he writes, “I am dying as I write this… You are reading the thoughts of a dying man” (94). Near the end of the book as the disease takes its toll, he revises his statement, “Do you understand that I am not dying, just disappearing before your eyes?” (157)

From the beginning, DeBaggio knows the tragedy that lies ahead: “The disease works slowly, destroying the mind, stealing life in a tedious, silent dance of death. Slowly the memory is impaired, and then you wander in a world without certainty and names. Yesterdays disappear, except those long ago. Eventually there is a descent into silence and a dependence on caretakers. Hands other than yours feed and bathe you” (5).

Throughout the book, DeBaggio’s ability to write steadily worsens. In one place, he admits, “I have just spent five minutes struggling to spell the word ‘hour’” (105). In spite of his decreasing vocabulary, DeBaggio ably communicates the tragic nature of his degenerative condition. Among the more heartrending realizations:

• I have no place to go now. I sit in a chair and try to capture fleeting moments of memories. (52)
• I am on the edge of uncertainty. I walk through my house where I have lived for over twenty-five years and I have the feeling sometimes I am in a motel, an unfamiliar place of transition. (76)
• Alzheimer’s burns the familiar and turns the world into an uncertain, frightening place. (78)
• If I look in a mirror, when will I no longer recognize my face? (139)

The following words are perhaps the saddest words I have ever read: “I don’t know if any of us can be prepared for what is to come. It is hard to prepare for the sly tricks and sorrows of tomorrow. Better we hug each other more often and forget the creeping sadness that we know will overcome us” (10).

It is true: “memory keeps us close to who we are as well as who we used to be” (98). DeBaggio’s past and present – and thus his future – are destroyed by the creeping void of Alzheimer’s disease. His struggle for identity, meaning, and purpose is eventually lost. Sadly, once the diagnosis was given, there was no hope he could win in the first place. By the end of the book, he reverts to the state of a child.

When there is no hope for a future, the past is all one possesses. And when even the past is erased, what then is there to hold onto?

“Do you remember?” becomes a cherished phrase for victims of Alzheimer’s disease. Now, as we possess them, we must not forget how precious our memories really are. Do you remember your childhood? Who you loved? What you enjoyed? Do you remember young adulthood? Freedom? Romance? Parenting? Loving others and being loved in return? The questions could go on forever. What a precious gift it is to remember! As long as I live – and as long as I am able – I must remember this.

Along with this, I will take to heart DeBaggio’s words: “Better we hug each other more often and forget the creeping sadness that we know will overcome us.”

© Richard J. Vincent, 2005