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Revisiting Tom DeBaggio, and Life with Alzheimer's

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

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In unpublished writings about Alzheimer's, Tom DeBaggio writes: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

Copyright 2023 NPR. To see more, visit https://www.npr.org.

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