Tom DeBaggio's Alzheimer's Journey Continues Five years ago, Tom DeBaggio told his personal story about his battle with early-onset Alzheimer's. A return visit finds the former nursery owner less sure of himself — and scared to death of getting lost again.

Tom DeBaggio's Alzheimer's Journey Continues

Tom DeBaggio's Alzheimer's Journey Continues

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Tom DeBaggio at the family nursery in Chantilly, Va. Andrea Hsu, NPR hide caption

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Andrea Hsu, NPR

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.

An Alzheimer's Journal

In a series of reports beginning in late 1999, Noah Adams visited with Tom DeBaggio and his family after Tom's diagnosis with early-onset Alzheimer's. Read excerpts of the interviews and listen to the series.

Dec. 22, 1999:

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"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."

March 16, 2000:

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Tom finds he's becoming emotional more frequently. "I can't explain why that happened. You know, it happens now a lot more than it did two months ago. And it just comes and sometimes it comes over important things and sometimes it comes over foolish things."

He's also having more difficulty speaking and he finds he must keep notes "to get something done."

"I wrote down some of the things that were occurring to me, because I wanted to. I can't remember things that are important — even things that are important to me sometimes."

"Often the early-onset Alzheimer's does go faster, but sometimes it doesn't. So it — I don't know whether it's going… too fast for me. That I can say. It's gotten to the point where I don't know what outrage will happen the next day, the next minute. It's a disease that causes outrage."

July 11, 2000:

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"Tomorrow I won't remember this [interview]. I can't remember yesterday. And unless it's something exceptional, such as this, I might remember it for a couple of days, but I just have no memory of yesterday at all."

Is that distressing? "Actually, no. It relieves me of a whole lot of things. You know, when you don't remember what you did yesterday, you can't feel bad about it or good about it, you know? It's just not there. And you're really living in the moment."

Nov. 22, 2000:

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"When I wake up in the middle of the night, there are these almost realistic movies that come just before I go to sleep. I lie down and I shut my eyes, and usually the first thing I see are bright, white lights. Not darkness — bright, white lights. And that'll shift and there'll be, sometimes, colored lights and sometimes kind of in the background of what my brain is sensing is something out of a Tom Mix movie."

Tom recalls getting lost months earlier, while driving to a bookstore: "I got to Route 50 and I didn't know why I was there. I mean, I was blank. I knew where I was, but I didn't know why. So I turned around and went back home."

Web Resources

Excerpt: 'When It Gets Dark'

Cover of 'When It Gets Dark'

Following is an excerpt from the 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 by Thomas DeBaggio. Copyright 2003 by Thomas DeBaggio. Reprinted by permission of The Free Press/Simon & Schuster Inc.

Excerpt: 'Losing My Mind'

Cover of '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.

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