Revisiting Tom DeBaggio, and Life with Alzheimer's

Tom DeBaggio i i

Tom DeBaggio was diagnosed with Alzheimer's disease in 1999. Melissa Block, NPR hide caption

itoggle caption Melissa Block, NPR
Tom DeBaggio

Tom DeBaggio was diagnosed with Alzheimer's disease in 1999.

Melissa Block, NPR
Joyce and Tom DeBaggio i i

Tom and his wife Joyce at the family's herb farm and nursery in Chantilly, Va. Melissa Block, NPR hide caption

itoggle caption Melissa Block, NPR
Joyce and Tom DeBaggio

Tom and his wife Joyce at the family's herb farm and nursery in Chantilly, Va.

Melissa Block, NPR
Tom has no memories of painting this picture, which he did in 1965. i i

Tom DeBaggio has no memories of painting any of the many pictures in his home, including this one, which he created soon after he was diagnosed with Alzheimer's. Melissa Block, NPR hide caption

itoggle caption Melissa Block, NPR
Tom has no memories of painting this picture, which he did in 1965.

Tom DeBaggio has no memories of painting any of the many pictures in his home, including this one, which he created soon after he was diagnosed with Alzheimer's.

Melissa Block, NPR

Alzheimer's disease afflicts more than 5 million people in the United States. With more people living into their 80s and 90s, that number will only increase.

For more than seven years, All Things Considered has followed the story of Alzheimer's patient Tom DeBaggio.

DeBaggio started an herb farm and nursery in Northern Virginia and wrote an authoritative guide to herbs. He also wrote two books about what it was like to have early-onset Alzheimer's disease. He described it as "the closest thing to being eaten alive slowly."

DeBaggio was 57 when he was diagnosed in 1999, and his decline has been clear in the intervening years. He no longer runs the family nursery, a job his son Francesco has taken on now, and the writing and reading that gave him such pleasure are both gone.

But he still goes to the nursery every day, a trip that Melissa Block recently took with Tom DeBaggio and his wife Joyce.

And even though Tom needs Joyce's help to do most everyday tasks — eating, bathing, taking his medicine — there are still moments of clarity. For example, he worries that his son might have Alzheimer's and will have to suffer the way he has.

He is also aware that he can't remember things, and that he has "lost a lot of things."

The awareness, Joyce says, is the cruelest part of the disease.

In unpublished writings about Alzheimer's, Tom DeBaggio writes:

Now that I have skinned the tree, whistled a dirge for friends gone, waggled a finger in disgust and anger, it is time to be silent and wait for the next tear to fall. This is the way the world ends, with clouds of spit ringing your mouth and stuttering screams of helplessness, as it was in the beginning. Go on. Keep going on. Struggle to stay alive, even as the dark night falls with angry shouts and burning tears.

Joyce DeBaggio says she would like to organize Tom's last, scattered writings into another book. He wrote and wrote and wrote, she says, because he knew he didn't have much time.

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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