MELISSA BLOCK, Host:
We're going to spend some time now with a family that listeners to this program have come to know over a decade. Tom DeBaggio, his wife, Joyce, and son, Francesco. Tom was diagnosed with early onset Alzheimer's disease when he was 57, and he decided to talk with NPR about his illness to document his decline, to break through what he called the shame and silence of Alzheimer's.
The stories began in 1999 soon after Tom was diagnosed.
TOM DEBAGGIO: This is one of the great scents - the scent of geraniums. This is apple-scented geranium.
BLOCK: NPR's Noah Adams started visiting with Tom at DeBaggio's Herb Farm and Nursery in northern Virginia.
DEBAGGIO: I still talk. I still stand up on both feet. I still look the same. And maybe they 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.
BLOCK: Over the course of a year, Tom DeBaggio described his growing confusion with language, the sudden, inexplicable tears, and the waves of anger that came with Alzheimer's.
I picked up the conversations in 2005. Tom took me through the nursery, proud to show off dozens of kinds of tomato plants.
DEBAGGIO: This is one of my favorites here, it's San Marzano. You know why.
BLOCK: 'Cause it's Italian.
(SOUNDBITE OF LAUGHTER)
BLOCK: When I visited Tom again three years ago, his decline was pronounced. He couldn't name the disease he has, but he could still express his feelings about it.
DEBAGGIO: I still don't understand why. It just happened in, I guess. And all of a sudden it was (unintelligible). And whew, I can still do things. This is - it's hard to do. And I sure hoped that Francesco and all of those people, and everybody like that, that they wouldn't have to go through this.
BLOCK: Since then, I've kept thinking about Tom DeBaggio and his family. And listeners wrote in, too, wondering how they're doing. So a few weeks ago, I went to see them again. The visit began with this question to his wife, Joyce: Would he want us to see him?
JOYCE DEBAGGIO: I know that's what he wanted. Till the very end, he wants to people to know. We discussed it endlessly. He wanted to throw it in people's faces basically, this is Alzheimer's.
BLOCK: Joyce took me to visit Tom at the nursing home where he's been living for the last two years. She had resisted putting Tom there, wanted him to be in his own house as long as possible. But finally, his care became overwhelming.
DEBAGGIO: Yeah, it's a little quieter here.
DEBAGGIO: Good. Good. Good. Good.
DEBAGGIO: Yeah, it is good. Very good. You don't like a lot of noise, do you?
BLOCK: Tom was dressed and in a wheelchair when we got there. He can no longer walk or use his hands. Language now is gone. He's thinner than when I last saw him, his face hollow. But he had flashes of animation and smiles. And at moments, he seemed to want to express himself.
DEBAGGIO: Ooh (unintelligible) heh.
(SOUNDBITE OF LAUGHTER)
DEBAGGIO: I (unintelligible).
BLOCK: Nice to hear that laugh.
DEBAGGIO: Today is Friday. You're Tom DeBaggio. I'm Joyce. Francesco says hello.
BLOCK: Tom responds to your touch, Joyce? You're holding his hand.
DEBAGGIO: Sometimes I think it's comforting. Then other times I'm not sure. One time he actually said: Don't touch me. He doesn't like to be handled, which I think is perfectly reasonable. Like, when they change him, he screams and screams and lashes out. And he's not going quietly. He's trouble.
BLOCK: Does that remind you of Tom before the disease (unintelligible)?
DEBAGGIO: Yeah, I knew he would always be difficult.
(SOUNDBITE OF LAUGHTER)
BLOCK: At lunchtime, Joyce fed Tom. Everything was pureed, because swallowing is a problem.
DEBAGGIO: Another bite?
DEBAGGIO: No? You didn't like it? Want to try something else?
DEBAGGIO: You only had two bites. There you go.
BLOCK: It was a long, painstaking process.
DEBAGGIO: Okay, Tom. I'm going to see you on Wednesday. Bye-bye for now. For now. But I'll be back. Okay. I'll be back.
BLOCK: Later that day, Joyce and I talked about the visit. We went to the nursery, the business Tom started 35 years ago.
DEBAGGIO: He's truly trying to say something. There's something still in his mind. He just - it's just so heartbreaking, you don't know what's in his mind, what he's trying to say. What's so hurtful is that I don't know if he knows that's he's not communicating. Because sometimes I feel that he's disappointed in my response, 'cause he'll sort of look away in disgust sometimes.
DEBAGGIO: Like when I say, oh yeah, yeah, uh-huh, in response to some babbling. And I know I've not made the right response. But I don't know what that's supposed to be because I don't know what he's saying.
BLOCK: When you visit him now, Joyce, when you visit Tom now, is it visiting your husband still? Does he still feel like your husband to you?
DEBAGGIO: Not really, no. I mean, I know it's Tom. It looks like Tom. I said it. I can't believe I just said it. But there's no communication. I mean, our relationship was based on communication and we talked about everything. And we talked and talked and talked, and now we can't. That's been the most difficult.
BLOCK: After he was diagnosed, Tom DeBaggio wrote two eloquent, intimate books about his life before and after Alzheimer's. In one, he wrote of his fear that he's passed the genes for Alzheimer's on to his son, Francesco. That thought, he said, almost more than anyone could bear.
Francesco is 45 now. He runs the farm, and it's thriving. He says he and his father never talked about that genetic question.
FRANCESCO D: I know my mom has told me that they had those conversations, and I've never read the books.
BLOCK: You've never read the books? Wow.
DEBAGGIO: It's not something I think I can handle. It's too raw. The double edge of it being my father and then applying all that to my future, I just can't do it.
BLOCK: Did you talk to geneticists at all, or have you gotten any genetic counseling or anything like that? What's your thinking on that?
DEBAGGIO: I have no desire. For me?
DEBAGGIO: My thinking is if they could do something preventively and I found out, then I'd certainly be more likely to do it. But since there's really nothing that they can do until symptoms show - I mean, I'm certainly going to be aware of the symptoms and hopefully be able to go at that point. But knowing ahead of time wouldn't give me any peace of mind.
You know, when it first happened to him, I was thinking, gosh, next week, that could be happening to me. You know, I just was a little worried and just keenly interested in what was happening to him with the thought that this could be me. At the time it was, this will be. Now it's, this could be me.
BLOCK: Francesco DeBaggio got back to work in the sweltering heat. He told me the last time he went to see his father in the nursing home was last year on Father's Day. He'll go back, he says, once work in the nursery slows down.
Joyce DeBaggio visits Tom once a week. She used to go almost every day. It gets harder and harder, she told me. She'll sit in the parking lot for a long time to get her courage up.
It's been a long road for you. It's been 11 years now since the diagnosis.
DEBAGGIO: Yeah, it has been, yeah.
BLOCK: Do people who come here - he had such devoted friends and fans from this business that he built...
DEBAGGIO: A lot of fans, yeah.
BLOCK: Do they ask about him now? Do they...
DEBAGGIO: A lot of them do, or they'll ask me if he's still alive. What's so wrenching, there's so many people that have Alzheimer's in their family. Or they've just lost someone, or someone's just been diagnosed. It just makes you cry, listening to all of their stories. It's heartening, too, that they can talk about it. It's absolutely amazing how many people have the same story.
BLOCK: Joyce, thanks for talking with us again.
DEBAGGIO: Thanks for coming over.
BLOCK: And thanks for taking us to visit Tom.
DEBAGGIO: Thanks for going. He needs the visit. I think it cheered him up. I think it helped him for a moment. I mean, he's forgotten already, but for that moment, I think it was important.
BLOCK: Joyce and Francesco DeBaggio at Debaggio's Herb Farm and Nursery in Chantilly, Virginia.
(SOUNDBITE OF MUSIC)
BLOCK: At our website, you can read excerpts from Tom DeBaggio's books and hear our earlier stories. You'll also find resources about Alzheimer's disease. That's at npr.org.