MELISSA BLOCK, Host:
This is ALL THINGS CONSIDERED from NPR News. I'm Melissa Block.
BLOCK: Alzheimer's disease. With more people living well into their 80s and 90s, that number is going to balloon. Today, we'll hear from someone with Alzheimer's who's become familiar to listeners of this program over the years.
Tom DeBaggio started an herb farm and nursery in Northern Virginia. He wrote an authoritative guide to herbs. He also wrote two books about what it was like to have early-onset Alzheimer's. He described it as the closest thing to being eaten alive slowly. Tom DeBaggio was 57 when he was diagnosed in 1999.
BLOCK: I still talk. I still stand up on both feet. I still look the same. Maybe they go out here and say, you know, doesn't look like there's anything wrong with him. And of course you don't see it.
BLOCK: Host Noah Adams interviewed Tom DeBaggio several times over the course of that first year with Alzheimer's. Then Tom was still working at the farm and writing everyday. Two years ago, when I first met Tom, his decline was clear. He could still recognize the many kinds of tomatoes in the nursery but he wasn't driving anymore, and the writing and reading that gave him such pleasure, they were both gone.
BLOCK: I can remember when I could do it. But when you ask me to do it now, it's just like it's not there anymore. That's all finished.
BLOCK: Last month, eight years after his diagnosis, I visited Tom DeBaggio and his wife Joyce again. Joyce said we could come by their house while she got Tom ready for his daily trip to the nursery. We met in the morning at their shingled home in Arlington, Virginia, its porch trimmed in bright purple.
You have a beautiful house. I like your purple door.
BLOCK: You like that?
BLOCK: I do like that.
Tom seems to remember me, but it's hard to tell. Inside, several times, he leads me over to a tall cactus near a window, each time as if we haven't seen it before.
BLOCK: That thing over there, don't - don't teach...
BLOCK: Don't touch it?
BLOCK: Yes. But that's been up in here for a long time.
BLOCK: That cactus.
BLOCK: Yeah. And it's nasty. Nasty, isn't it?
BLOCK: In the kitchen, Tom stays out of the way while Joyce prepares his breakfast. He has the same thing every day: oatmeal, toast with applesauce, some fruit - today, it's from a can - milk and tomato juice.
Joyce, does Tom sometimes make his own breakfast?
BLOCK: No. He used to. He used to do most of the cooking and do a lot of stuff on his own, but no.
BLOCK: When did that stop, the breakfast?
BLOCK: Oh, it's been over a year now. I started out just putting the things out for him, but then it got to the point where he couldn't put it together anymore.
BLOCK: What would happen if he tried?
BLOCK: He'd probably just sit in confusion, and then he'd call me and just tell me he didn't know what to do. He has trouble taking his pills now, as well. He won't take them unless I'm right here and hand each pill to him, which is a progression that worries me, because there will come a time when he won't be able to take them at all.
BLOCK: Tom takes Namenda, Exelon and Aricept - they're supposed to slow the progress of Alzheimer's - also Lexapro for anxiety.
BLOCK: See that one?
BLOCK: Yes, I can see that.
BLOCK: (makes noises)
BLOCK: Sometimes, he acts like a three-year-old.
BLOCK: Who? You?
BLOCK: Joyce also has to help Tom shower, shave and dress. So after breakfast, they head upstairs.
BLOCK: Other way, other way, other way, other way, other way.
BLOCK: Where are we going?
BLOCK: To the bathroom.
BLOCK: Where is that?
BLOCK: Right over there.
BLOCK: Thought it was over there.
BLOCK: Joyce lathers up Tom's face and starts to shave him.
BLOCK: Sometimes he can do this for himself.
BLOCK: I can do it all the time.
BLOCK: Yeah. Sometimes, when he tries to do it himself he'll do just one spot over and over and over again, and it just really makes me cringe.
BLOCK: When it's time for the shower, Joyce undresses and climbs in with Tom to wash him. He's not comfortable, and he lets her know it.
BLOCK: It's hot. It's hot.
BLOCK: I'll make it cooler.
BLOCK: Getting Tom ready is a long process. But after a while, we head out to DeBaggio's herb farm in Chantilly, Virginia. When we get there, Tom crouches down on to look at something green poking out of the ground.
BLOCK: See this little baby?
BLOCK: It's coming right up, huh?
BLOCK: Right here, yeah.
BLOCK: Tom and Joyce's son, Francesco, runs the nursery.
BLOCK: He's really fascinated with small things, babies, not necessarily human babies. Plant babies. If it's small, it's oh baby baby, or something like that. He still will approach people and engage them in some way, and I don't know if they understand what he is really trying to do or anything.
BLOCK: But the social impulse is still there.
BLOCK: The impulse is there. I think it's there more than it was when he was healthy.
BLOCK: Right. He was always very anxious...
BLOCK: Too busy.
BLOCK: Too busy.
BLOCK: Yeah. Yeah.
BLOCK: I used to have people come up to me and say, is he in a good mood today? Can I talk to him today, is he all right? (Laughing)
BLOCK: Oh, you mean before?
BLOCK: Before he got sick.
BLOCK: Tom and Joyce and I sit down at the nursery to talk about his illness.
BLOCK: When it first started, I didn't think anything was going to happen. And here it is. And I don't know why. I don't know why it happened and had me do that. You know what I mean?
BLOCK: But the - at some point, I still have what I have, before whatever it is.
BLOCK: Do you know what the disease is called, Tom? What you have?
BLOCK: No, I don't know what it is. Do you?
BLOCK: Yeah. It's called Alzheimer's.
BLOCK: Oh, yes. That's it. Yeah. I still don't understand why. It just happened in, I guess. And all of a sudden it was, (makes noises). I can still - I can do things, but this is - it's hard to do. And I sure hope that Francesco and all those people and everybody like that, that they wouldn't have to go through this.
BLOCK: You worry about your son having the same disease that you have?
BLOCK: Joyce, what are you hearing when Tom talks about his illness this way?
BLOCK: I'm surprised he can still articulate how he feels, because he doesn't often anymore. He used to all the time. One thing about it, the anger has gone, it's more wonder. But even I don't know how much he remembers about what he could do.
BLOCK: Yeah. I can't remember more - I've lost a lot of things.
BLOCK: But you're aware that you've lost a lot of things still.
BLOCK: That's what's so cruel.
BLOCK: Yeah. Well, that's the way it is.
BLOCK: Joyce, do you try to ask Tom about what he remembers? What he's aware of? Or do you just try to absorb it?
BLOCK: I used to. Lately, I haven't been. Mostly the questions come from him. He started to ask me who he is. I'll tell him, you're Thomas DeBaggio, you're my husband. And he'll laugh and he'll say, oh, oh, oh, you know. And then he'll say it's just a joke, and that happens a couple times a week. Sometimes he doesn't remember where he is, or why he's there. And if we're in the backyard, he doesn't remember that that's his house.
BLOCK: Earlier when we were at their house, Joyce had found a page of Tom's unpublished writing about Alzheimer's. Sitting together at the nursery, she reads the last paragraph on that page.
BLOCK: (Reading) Now that I have skinned the tree, whistled a dirge for friends gone, waggled my 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.
BLOCK: As Joyce reads his words, Tom begins quietly sobbing. Joyce strokes his back as his shoulders shake.
BLOCK: Just about every sentence he wrote was like a poem.
BLOCK: I'm sorry that made you sad, Tom.
BLOCK: I don't know how it happens, but it does.
BLOCK: You have a beautiful line on this page. It says birds blow by the window as fast as a stolen kiss. That's lovely.
BLOCK: Thank you.
BLOCK: Joyce, when we were talking here two years ago, you said that you wanted Tom to stay at home as long as he remembers home, that that you thought was very important, and he's still at home.
BLOCK: Yes, and sometimes I think it's even more important when he doesn't remember some things, like today he didn't remember which direction to go for the bathroom, but he's still, it's still his place, and I can't imagine him being in another place, and as you can see from his conversation, there's still a lot of him there. That shouldn't be shut away.
BLOCK: When I was looking through Tom's book, he describes you, Joyce, as being very private, and we're sitting here talking about very personal, intimate things. Why do you let us come and talk to you?
BLOCK: For him. I don't want him to be forgotten. I don't want him to fade away.
BLOCK: Thank you.
BLOCK: And we discussed at the beginning, I remember him telling me that he wanted to be out there. He wanted people to see him really bad. He wanted it all recorded. He said even if I can't talk, I want people to see.
BLOCK: And I want to let them know that I was going to die, and this is what I say.
BLOCK: But I remember last time you were here, the following week, after your broadcast, you read a letter from someone who said how dare you exploit these people. (Laughing)
BLOCK: I kept thinking you're not exploiting us. We're exploiting us, you know?
(SOUNDBITE OF LAUGHTER)
BLOCK: He's exploiting himself because he thinks it'll help others, maybe. I think it helps him, too. It helps you, too, right, to be able to talk about it?
BLOCK: So no one has to worry about you exploiting us.
BLOCK: Joyce and Tom DeBaggio. Joyce says she'd 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.
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