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Tom DeBaggio's Alzheimer's Journey Continues

by Melissa Block
May 19, 2005 (All Things Considered)

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Tom DeBaggio is less sure of himself these days. He fears a recurrence of an incident over a year ago in which he got lost while driving to the family-run nursery outside Washington, D.C. "I didn't really know where I was," he says.

The story DeBaggio's battle with early-onset Alzheimer's disease was first told in a series of interviews on All Things Considered five years ago. Melissa Block visits DeBaggio's Herb Farm and Nursery in Chantilly, Va., for a conversation with DeBaggio and his wife Joyce.

Below are the previous stories and excerpts of Tom DeBaggio's two books on Alzheimer's.

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An Alzheimer's Journal

"I still talk. I still stand up on both feet. I still look the same. And maybe [customers] go out of here and say, 'You know, doesn't look like there's anything wrong with him.' And, of course, you don't see it." "I'm exercising my mind four to five hours a day trying to keep it going, thinking about things. Trying to put things together in the hope that this will keep things going. That's what the doctor says, you know, 'Keep doing something.' But it's just stuttering a lot of times."

Book Excerpt: 'Losing My Mind' Following is an excerpt from Losing My Mind: An Intimate Look at Life with Alzheimer's by Thomas DeBaggio: My father would have been ninety-one this year. I wish I could tell him I am sorry, sorry he died before his time and before we could know each other as adults. I wish I had not had to see my mother die slowly of cancer in the little hospital in Eldora, so ruined by life she could no longer suck water from a small ice cube. I am sorry it took so long to find myself and understand how much I loved them. All I have left are a few weak memories, and now it is too late for their boy. It is frightening to lose control of your body in any way. It is especially tragic when the body's central control system, the brain, is the target of an angry destructive process that science has been unable to tame or reclaim, Memories tell us who we are and where we have been and they warm us and provide direction. In later years, the old memories remain to offer familiar anecdotes and the safety of the past. As the brain is slowly devoured and gradually succumbs, turning the body into an empty vessel, remembering and writing are more than difficult; they are cold receptacles emptied of content. My memories are slowly disappearing from places inhabited for so long. In themselves, my memories do not compare with the great sagas of this century, the births, deaths, tumult, madness, great art and music, and the intense suffering of so many human beings. Our immortality, such as it may be, is not contained in what we dreamed or the secrets we kept; it is how our friends and loved ones remember us. The struggle to find the words, to express myself, has become insurmountable. I must now be done with writing and lick words instead. I will soon be stripped of language and memory, existing in a shy and unsteady forbearance of nature. I am on the cusp of a new world, a place I will be unable to describe. It is the last hidden place, and marked with a headstone. I must now wait for the silence to engulf me and take me to the place where there is no memory left and there remains no reflexive will to live. It is lonely here waiting for memory to stop and I am afraid and tired. Hug me, Joyce, and then let me sleep. From LOSING MY MIND by Thomas DeBaggio. Copyright © 2003 by Thomas DeBaggio. Reprinted by permission of The Free Press/Simon & Schuster, Inc. Book Excerpt: 'When It Gets Dark' Following is an excerpt from book When It Gets Dark, DeBaggio's second book on Alzheimer's: Joyce and I have talked several times about taking trips, flying away to happy, interesting foreign lands and unusual places. I see a man with Alzheimer's swirl off to play and travel, a last chance to carry on and have fun. It is something I have never done and the idea has an almost irresistible charm. Yet, I hem and haw and roll my head in the sand. We go nowhere. What I have been unable to tell Joyce clearly is that I don't want to wander outside my deteriorating brain. With the onset of Alzheimer's, I saw new revelations and visited places I had never been. They have turned out to be as useful, frightening, pleasant and beautiful as anything I could have wished. The real reason we haven't gone anywhere is that I am afraid of getting lost. I need the familiar around me to give me comfort and stability. I am at such a tender point in life now that I worry when I head out for the grocery store five blocks away. I get angry if a chair is moved in the house. I wanted to chart this world of memory I've discovered inside my brain but I am beginning the exploration too late. The fires of Alzheimer's have nearly destroyed my short-term memory. My long-term memory is left battered; trying to find moments of the past is like fishing with a dull, rusting hook without bait. From WHEN IT GETS DARK Thomas DeBaggio. Copyright © 2003 by Thomas DeBaggio. Reprinted by permission of The Free Press/Simon & Schuster, Inc.

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