“Is that distressing?”
“Actually, no. When you can’t remember anything, you can’t feel good or bad about it.”
— Noah Adams’ third interview with Tom DeBaggio, aired July 3, 2000
In the fall of 1999, Noah Adams, co-host of NPR’s All Things Considered (ATC), came across an unusual item in a newsletter published by Tom DeBaggio, who sells herbs from a greenhouse in an outer suburb of Washington, D.C.
Adams, who had been purchasing herbs from the DeBaggio family for some years, was informed-along with other customers of DeBaggio Herbs — that Tom, 57, had been diagnosed with early onset Alzheimer’s Disease and that he was keeping a written record of his condition.
Adams took the information to Ellen Weiss, executive producer of ATC, and suggested that it might be a story to follow. Weiss agreed and Adams talked with DeBaggio about tracking the course of his disease through a series of interviews, something DeBaggio was eager to do. Four have aired so far. Their first recorded talk took place a few days before Christmas 1999 at the greenhouse in Chantilly, Va., within earshot of jets landing at Dulles International Airport.
The conversation opens with DeBaggio showing Adams some of his 40,000 products, explaining how, about a year before, he had begun to forget the names of plants when customers presented them for purchase. “I knew what it was,” he says, frustration rising in his voice,” I just couldn’t name it.”
Tom DeBaggio began his business in the early ’70s, selling tomato plants in plastic cups for 25 cents each from his driveway. He is now a recognized authority on herbs and co-author of a recent 800-page book on the subject. As he speaks of names slipping away, it is like listening to a seasoned mariner attempting to make sense of increasingly confused designations on his ship’s compass, or a skillful artist describing how his once distinctive colors have begun to merge into a generalized muddiness.
The interviews include Tom’s wife, Joyce, and his son, Francesco. All three express their anguish differently-Joyce seems fearful, angry, depressed; Francesco is laconic, seemingly pragmatic and worried about genetic implications.
If the memory disorder were the only or chief topic, the program segments would have been substantially informative, but nothing exceptional. The difference here is that Adams and the DeBaggios are discussing irrevocable loss and expressing a variety of their emotional responses. These are intelligent, articulate people who seem willing, in varying degrees, to share their reactions to a profoundly disturbing problem that engulfs 250,000 more Americans every year.
The disorder has become all too familiar as the elderly population grows exponentially, but Shakespeare’s final stage of man (“… sans teeth, eyes, taste, everything,” including the mind) is rarely probed in a public medium. This is no didactic tract describing the steps toward death and how to manage them gracefully. It is, rather, one family’s aural history of the father’s brave descent into dementia and his responses to “losing my mind,” a phrase DeBaggio chose as working title of the memoir he has been writing.
“I still talk,” says Tom in his first radio encounter with Noah Adams. “I still look the same, still stand up on both feet. People must wonder . . .”
Joyce reports that there was no question about his going public. “It was his decision. He needed to do it. When he broke the news it changed everything. People were very kind. They hugged him…”
“That’s one of the things about this,” Tom breaks in characteristically. “You can hug people you thought you could never hug before. And they hug you back! There’s a great freedom about opening yourself up to people and telling them your secrets.”
From the first, it is plain that Tom, while reconciled to his illness, has not given up. “I exercise my mind four to five hours each day, trying to keep things going. Words of one syllable went first-‘wall,’ for example.” And Joyce interprets: “He’ll say, ‘What’s that tall thing at the end of the room?'”
“My mind is stuttering,” he continues. “The one thing I can remember is that I have Alzheimer’s. The awful thing about it is that I know the outcome.”
“Watching him is very difficult,” Joyce says. “But it’s not like having it [myself]. He may live 10 years. But at the end, he won’t know anything.”
Through some of this conversation, it is possible to imagine that we are listening to a genial, well-informed man and his wife talking about someone else’s condition. Then, abruptly, Tom draws a blank. There’s a long pause and Adams repeats his question, elaborating somewhat. Still, no answer. “I’m sorry,” Tom says finally, “I don’t understand.” Joyce intervenes with an explanation, and they move on. There will be more such lapses, some reducing Tom to tears, poignant reminders that the symptoms he is describing, now clinically, now kidding around, are indeed his own.
Toward the end of the first interview, Adams observes that working in a greenhouse might be the ideal place for someone with his condition. And Tom’s response carries the same edgy quality as when he described hugging relative strangers: “Do you know how many diseases are floating around in a warm, wet greenhouse? It’s an ideal breeding place for diseases.” You can imagine his eyes widening in mock fear. “People would like to believe that if you hung around in a greenhouse full of herbs, you would be well, sane, and have a great sex life. It’s not like that.”
Soon Adams thanks Tom and his family. The first interview is over. The 45 minutes have been edited down to 12 for ATC. The two-person crew packs up its gear. These are the same two people who will accompany Adams to record all the conversations. During the sessions each of them will occupy the same place in the DeBaggio living room, as will Adams and the family members.
I talked with Ellen Weiss soon after NPR broadcast the third interview in November. She explained that the goal of the series was to hold conversations with someone who was “going through the experience of Alzheimer’s.” The advantage here was finding someone with early onset Alzheimer’s. “In other stories about the disease,” she said, “the people who have it are too far along, they’ve lost the skills to articulate what they’re experiencing. We thought there was a fair amount of recording of persons who take care of patients and a lot of science about Alzheimer’s.”
I asked about privacy. “He was clearly already public about what he was going through,” she said. “The family seems to know that the series is not voyeuristic. Tom was anxious to talk. He wanted to get the story out.”
And the audience reaction? “The response…has been tremendous,” Weiss says. “I mean HUGE. It is overwhelmingly positive, and grateful. Those who feel this way have often known someone in a similar situation. For people who are dealing with someone whose disease is more advanced, it gives them a voice…. Noah has developed a unique relationship with Tom DeBaggio. There’s a lot of conversation that takes place in order to develop a zone of confidence.”
It was perhaps this confidence that Adams thought might be threatened when I contacted him with some questions. He hesitated briefly before politely declining to talk about the series. I did not protest.
Adams has been making radio programs of all kinds for more than 30 years, first at southern stations and since 1975 for NPR. He has also published his essays written for radio and, in 1996, a memoir, Piano Lessons: Music, Love, and True Adventure.
Talking with a smart man who is rather swiftly losing his mind to Alzheimer’s requires considerable sensitivity, something beyond tact, especially if important but possibly embarrassing details are not to be missed. Adams nudges his subjects (both Tom and Alzheimer’s) with remarkably gentle persistence, often saying “I don’t understand,” or asking, “What do you mean?”
Near the beginning of the second interview, in March 2000, Tom commences a story about his early life as a journalist, and suddenly breaks down, sobbing softly, whispering, “I’m sorry.” Adams might have ignored this brief episode, or deleted it in later editing. Instead he asks Tom if he is surprised by becoming so emotional. This brings in Joyce to say that it has been happening more frequently. She is sure it’s the Alzheimer’s. “Mr. Cynic has become much more emotional,” she says.
“I’m still a cynic,” replies Tom, ” but I cry when I do it.” It is a revealing moment that required, and received, unusual journalistic finesse.
We learn that the family is meeting with a counselor now and that Joyce talks separately with a psychiatrist. For Tom, small annoyances-forgetting names, difficulties in setting the microwave, trouble finding numbers on a phone-have become more numerous and aggravating. “It just flames me!” he says angrily, “I jump up and down, scream and holler. I’m mad as hell!” Then, more quietly: “I thought I had more time. It’s going too fast. I don’t know what outrage will happen next.”
By the end of 2000, near Christmas and completion of the fifth program, Tom is 58, and his son has taken over DeBaggio Herbs. He has finished a draft of his memoirs, has been honored by a national herb organization and his Big Book of Herbs, coauthored with Arthur O. Tucker, has finally been published. But by this time Tom cannot remember these important events and finds them difficult to comprehend when Joyce recalls them for him. It’s “not clear to me right now” what is in the book that took him 10 years to write.
He’s grateful for a new bracelet inscribed with his name, address and phone number, which could help if he becomes disoriented or lost. He sees bright lights when closing his eyes before sleep and remarks that when he takes his regular walk he sometimes has a “ghostly feeling” as if he’s not really there. “Writing is the only way I can find a connection with myself,” he says. He describes a terrible night during which he mistakenly overdosed on his medicine. Through it all, Noah Adams is there, not so much to prompt, but to enable him to tell his story as clearly as he can.
Toward the end of the fourth segment, Adams asks, “Do you remember your marriage? Can you see that visually?”
“I do remember some things,” says Tom, “but I can’t talk about them on the radio.” To which Adams remarks, “Let the record show he’s smiling.”
“This is an excellent radio story,” says Ellen Weiss. “If this were visual, I think people would start thinking about what Tom DeBaggio looks like and stop thinking about what he’s saying.”
This shrewd observation underlines the uniquely affective nature of Tom’s self-awareness and his family’s more guarded, but nonetheless intriguing, dynamics. Her comment also reminds us that this broadcast format-short segments sandwiched between unrelated features, aired irregularly over a long period-struggles with distinct disadvantages. One is a loss of continuity, something especially important if you wish to reveal the maturity of an illness. Tom’s disease is progressive. Most listeners, to say nothing of those with a special interest in Alzheimer’s, are eager to learn not only which of his activities are affected, but how rapidly the deterioration is happening.
It is, undeniably, a dramatic process. It’s rather like listening to succeeding acts of a human tragedy. Classically, we know the outcome. But the significant and instructive part is learning how the real-life hero and the supporting cast, Tom’s family, respond to their fate. Few would deny that this drama would be more successful if it could be heard as a whole, as one coherent story, rather than a series of snapshots.
My own small and altogether unscientific audience sampling reveals that of those who are aware of the programs, none have heard all of them. Most have listened to portions of one or two. They thought these fragments were remarkable and some could repeat almost precisely what Tom or Joyce had said. Not being everyday, regular ATC listeners, they were resigned to hear little more of the series. They didn’t feel cheated, just unsatisfied. No one mentioned picking it up on the Web, though that is possible.
All of which deserves more words about NPR broadcasts than present space allows. But one final point: this is the kind of public radio programming that is so good, so aesthetically engaging and full of practical value that, perversely, you want it to be still better. And it could be, by editing the segments for a future broadcast “special,” and by distributing a final tape cassette or CD version to individuals as well as a wide variety of institutions.
At the end of my conversation with Ellen Weiss, I asked how she expects to conclude the series. Her answer was informed by the same blend of experienced professional pragmatism and thoughtfulness that marks the series’ segments: “I think that when we feel that Tom can no longer talk for himself, when he can’t be the central voice in the piece, we’ll have reached closure.”
DeBaggio wrote two Simon & Schuster books on his experience with early-onset Alzheimer’s: Losing My Mind: An Intimate Look at Life with Alzheimer’s, published in 2003 and still available from booksellers; and When It Gets Dark: An Enlightened Reflection of Life with Alzheimer’s, published in 2007.
He and his wife talk with The Writer magazine, 2003.
Copyright 2001 American University