An Alzheimer's Journal, Part 2

Noah talks with Tom DeBaggio, his wife Joyce and his son Francesco, about the progression of Tom's early onset of Alzheimer's. We visited him for the first time three months ago, at his family herb farm in Chantilly, Va. DeBaggio says there is a difference in his condition from the last time we spoke. The disease is progressing more quickly than he had hoped it would.

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LINDA WERTHEIMER, host:

It's NPR's ALL THINGS CONSIDERED. I'm Linda Wertheimer.

NOAH ADAMS, host:

And I'm Noah Adams.

Back in December, we talked with the DeBaggio family--Tom, his wife Joyce, their son Francesco, about Alzheimer's disease. Tom DeBaggio has early onset Alzheimer's. He is 57. Last week, we paid another visit to DeBaggio Herbs, the family business. The greenhouse is on Mountain View Drive in Chantilly, Virginia.

(Soundbite of running water)

ADAMS: There is a rock garden outside the greenhouses and a large fish pond set among some lavender and sage plants.

Mr. TOM DeBAGGIO: We have our special breed of koi. It's a mixed lot. There's some with red heads, some with peach-colored heads. They're quite entertaining, especially in the evening when they begin jumping out of the water to grab something that I can't see, but they apparently know better than I what they want to eat. And they'll just leap up right out of the water and take it.

(Soundbite of jets flying overhead)

ADAMS: So we have the fish in the pond, the jets from Dulles Airport, the mountains to the west and how many plants would you say are within this...

Mr. FRANCESCO DeBAGGIO (DeBaggio Herbs): Right now?

ADAMS: Right now. Francesco?

Mr. F. DeBAGGIO: Forty thousand--30,000 or 40,000.

ADAMS: Francesco DeBaggio is running the greenhouse operation now. Tom and Joyce live in town in Arlington, Virginia. Now that the greenhouse is open for the spring and summer season, Tom plans to be there on the weekends, but mostly he's working at home, attempting to write about his experience with Alzheimer's.

During this visit we talked about his increasing difficulty in recalling names or even how to set the microwave for his morning oatmeal. And I asked him about his earlier career as a journalist. He'd worked for a couple of newspapers. Beginning as a junior in high school, he wrote for the Teen Page and he remembers a high point from those days doing a story about an integrated high-school dinner.

Mr. T. DeBAGGIO: That was a time that was a very conflicted time in Virginia because segregation was ending and there were a lot of things going on. During that time, the first integrated sit-down dinner with high school students occurred. People from all the big newspapers came to this because it was a--northern Virginia was thumbing its nose at the state of Virginia, which it...

ADAMS: Mm-hmm.

Mr. T. DeBAGGIO: ...of which it was part.

ADAMS: Right.

Mr. T. DeBAGGIO: When it was over, I was walking out and I was going to write this piece for the Teen Page. And Shirley Elder who was then at The Sun and later went on to bigger things in Washington, said, `Tom, I'm going to go have dinner with this guy from Life magazine. Why don't you just write the story and leave it on my desk?'

So I went over and went in the newsroom. It was about 11:00 at night. Nobody was there. I turned on the lights and I tapped out this story, left it on her desk.

And the next day...

(Soundbite of crying)

Mr. T. DeBAGGIO: I'm sorry. The next day it was on her desk and the next day it was in the--on the front page of the paper.

ADAMS: Tom, are you surprised that you found it emotional to remember that just now for us? Did that...

Mr. T. DeBAGGIO: I don't know whether that--whether it was the emotion of remembering that...

Ms. JOYCE DeBAGGIO: It's part of the Alzheimer's, I think, because he's become much more emotional. Starting about even two years ago, even, before we knew, he's been getting more emotional about anything--movies, especially.

ADAMS: Mm-hmm.

Ms. DeBAGGIO: He will--much more emotional. He was Mr. Cynic. And now he's changed that way.

Mr. T. DeBAGGIO: I'm still a cynic. I'm still a cynic, but I cry when I do it.

(Soundbite of laughter)

Mr. T. DeBAGGIO: I can't explain why that happened. You know, I--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.

ADAMS: I know that the three of you have been meeting--how many times--with a counselor about Alzheimer's, about what to expect?

Ms. DeBAGGIO: We've only had one...

ADAMS: Once.

Ms. DeBAGGIO: ...group meeting. The other one was canceled because of snow.

ADAMS: Francesco, what do you think about how it went? What did you...

Mr. F. DeBAGGIO: We didn't really even talk about the Alzheimer's at all.

ADAMS: Really.

Mr. F. DeBAGGIO: It was more of a--I guess for the psychiatrist to kind of get a feel for the dynamic of the family.

ADAMS: Mm-hmm.

Mr. F. DeBAGGIO: And that's--basically, it kind of all focused around Mom.

Mr. T. DeBAGGIO: I think the psychiatrist got exactly what she wanted. She wanted to find out where the weak link might be and then work on it to strengthen it so that--and typically, I think, she probably already knew it was going to be the person who didn't have Alzheimer's who was the one that was going to be punished most by the disease, because they had to live through it and take care of what was going on, so they had to be the strongest. And Joyce is the strongest.

ADAMS: Will you have other sessions, though--other meetings with...

Ms. DeBAGGIO: I'm sure we will. I'm sure we will.

Mr. T. DeBAGGIO: Yeah, we'll go back and have some more.

Ms. DeBAGGIO: I'm seeing her every month, sometimes more.

ADAMS: For private talks.

Ms. DeBAGGIO: Yes. Yes, and medicine.

ADAMS: And, Tom, how are you? We talked to you last, three months ago. How are you doing, do you think?

Mr. T. DeBAGGIO: It's getting worse. I'm having more--I don't know whether I'm having more difficulty now speaking than I did before, but...

(Soundbite of papers being moved)

Mr. T. DeBAGGIO: I mean, look at my notes here. 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. So I don't like to do this because it's not very--What is that? What did I want to...

Ms. DeBAGGIO: Spontaneous?

Mr. T. DeBAGGIO: Spontaneous, yeah.

ADAMS: Mm-hmm.

Mr. T. DeBAGGIO: What was the thing the other day we were talking about? Where I have to write notes--I have to write notes to get something done.

Ms. DeBAGGIO: When The New York Times doesn't come, you can't--when you call, you can't remember.

Mr. T. DeBAGGIO: Oh, yeah. Oh, yeah, that's what it is. All of a sudden, The New York Times stopped turning up in my front yard, and I wanted to call them up. Well, I couldn't find the piece of paper where I had the number to call them to get another paper. When I did--when I did get it, I was met with an answering machine. It says to push this, push that. I gotta look all over the place because I don't remember where the numbers are anymore. It's minor things like that, and it just flames me. I just jump up and down, scream, holler--I mean, I'm a wild man all of a sudden. Maybe it's not so sudden. I don't know. Maybe I've always been that way kind of, but...

ADAMS: Well, you didn't mention that before that it was bothering you that intensely.

Mr. T. DeBAGGIO: Well, it is.

ADAMS: Before it was more puzzling to you and intriguing.

Mr. T. DeBAGGIO: It's a lot less puzzling now.

ADAMS: Right.

Mr. T. DeBAGGIO: I'm mad as hell.

ADAMS: And you stay that way?

Mr. T. DeBAGGIO: Only when you're around.

ADAMS: (Laughs)

Mr. T. DeBAGGIO: No, it's not all the time.

ADAMS: The last time we talked I asked you if you would have periods in the day when you could forget that you have Alzheimer's.

Mr. T. DeBAGGIO: And what did I say?

ADAMS: I've forgotten.

Mr. T. DeBAGGIO: Well, I have, too.

ADAMS: (Laughs)

Mr. T. DeBAGGIO: Maybe we ought to go back to the same doctor.

ADAMS: (Laughs)

Mr. T. DeBAGGIO: Obviously, I don't think about it all the time, but it's always there because it's always tripping me up. The -- sure, there's times during the day when I would not be aware of it. I'll be taking a nap.

I'll tell you, the other--the other morning I woke up and I--I lay in bed and all of a sudden, this yellow object appeared on the wall across from me. And it'd flit away and another one smaller--different size, different shape--all jagged, ridged, around the ridge of it. And these--this thing kept going back and forth up there. And I was wide awake and I was watching this. It was like a light show projected onto the wall. And it was happening over here and over there and in front of me. And I watched this thing--tunk, tunk, tunk, tunk, tunk, tunk, tunk. All this stuff going on and then it stopped. And later, I think, Joyce that week--I told Joyce about it and she had a doctor's appointment and mentioned it to the doctor and she said, 'Yeah. That's part of Alzheimer's.'

ADAMS: It is.

Mr. T. DeBAGGIO: That's one of the kinds of things that can happen with it. And actually, you know, that's one of the more pleasant things to have happen--to have a light show when you wake up. If it weren't tied to something else that was destroying me--in fact, my first interpretation of it was that my--it was that mind was showing me in this way what was happening inside my brain, that this was a fire burning.

ADAMS: Hmm.

Mr. T. DeBAGGIO: And it was projected onto the wall. That was the romantic approach that I took to it when I first saw it.

ADAMS: Right.

Francesco, do you--what are your concerns here about the progression of Alzheimer's with your dad? Do you think--do you see it going faster than you had thought or...

Mr. F. DeBAGGIO: It's hard to say, because I don't see it from day to day. He still seems to be able to remember things that we've talked about and sometimes he doesn't, but...

ADAMS: Right.

Mr. F. DeBAGGIO: I find myself more surprised when he does remember things now.

Mr. T. DeBAGGIO: It's--that--things are going along pretty much the way I thought they would, except that I--I thought I had more time.

ADAMS: You feel it's just moving a bit faster than you--that you had thought.

Mr. T. DeBAGGIO: It's going a lot faster than I thought.

ADAMS: Right.

Mr. T. DeBAGGIO: Often the early onset Alzheimer's does go faster, but sometimes it doesn't. So it--I don't know whether it's going--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.

ADAMS: Thanks, Tom.

Mr. T. DeBAGGIO: Thank you, Noah.

ADAMS: Thank you all very much for talking with us.

Ms. DeBAGGIO: Thank you.

Mr. F. DeBAGGIO: Thanks.

Ms. DeBAGGIO: Thank you.

ADAMS: Tom DeBaggio, Joyce DeBaggio, Francesco DeBaggio talking with us about early onset Alzheimer's disease at the DeBaggio greenhouse in Chantilly, Virginia.

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WERTHEIMER: You're listening to NPR's ALL THINGS CONSIDERED.

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