Confronted with the irreversible—and ultimately fatal—brain disorder that affects 4 million Americans, most of them over 65, says DeBaggio, "I cried to begin with. Now I scream." Nevertheless, a week after his diagnosis, DeBaggio, a former newspaper reporter, sat down to chronicle the inexorable deterioration of his own existence. The result, Losing My Mind: An Intimate Look at Life with Alzheimer's
(published in March by the Free Press), has been hailed by critics as a remarkable feat of writing—and, ironically, of memory. "No one," wrote a reviewer in the Houston Chronicle
, "has shown us the contours of [Alzheimer's] better than Thomas DeBaggio. No one has written a braver, more honest book about this fearsome disease."
At first the family blamed his memory lapses on stress and overwork. But after the shock of his diagnosis wore off, says DeBaggio, "I said, 'I'm going to write something about what happens when a person has this disease.'" Jotting down notes during his three-mile daily walk, working at his computer late at night and prevailing upon Joyce to help retrieve words lost to his disease, he finished the book four months later. The process, says Joyce, 60, was therapeutic. "Not only did it actively stimulate his mind," she says, "it helped him emotionally a lot. He was determined he wasn't going to waste any time. [The book] became everything."
Even as the definition of "everything" became ever narrower. In passage after harrowing passage, DeBaggio describes how Alzheimer's encroaches on his mind. "I walk through my house where I have lived for over 25 years," he writes, "and I have the feeling sometimes I am in a motel, an unfamiliar place...." Most poignant are his expressions of regret about the course of their marriage: "We should have had fun earlier, much more of it, instead of working constantly.... Now we have my ugly slow death to live through. Dear Joyce," he writes, "when you can't hear my voice anymore, will you be able to feel my love?"
That love began in the early '60s, when Joyce sold art supplies at an Arlington department store and DeBaggio, then a newspaper reporter and an amateur painter, was a frequent customer. DeBaggio, the son of a lawyer, Carl, and a homemaker, Connie, had grown up in Arlington. "He was different," Joyce says, "and he cared about me a lot." The two began dating, and in 1964 they wed. Their son Francesco, now 37, arrived a year later.
In 1974, after reporting stints in Peru, Ind., and Wilmington, Del., left him disenchanted with the news business, DeBaggio quit journalism and, moving back to Arlington with his family, started a backyard farm and began selling herbs and vegetable plants. A respected herbalist, he published three books on the subject over the years. By 1999, when his disease first manifested itself, DeBaggio had greenhouses in Arlington and Chantilly, 30 miles away, and a mailing list of 10,000 clients.
His plans to expand his 11-acre Chantilly nursery are now shelved; the Arlington facility has shut down. Francesco, who is unmarried, has taken over DeBaggio Herbs full-time while Joyce, an artist, struggles with the challenge of the future. Her husband's disease, says Joyce, who is seeing a therapist and taking an antidepressant to help her cope, "has affected me profoundly." Although she used to work late at her printmaking studio in Alexandria, Va., 15 minutes from the rustic two-story wood-frame house the couple share in Arlington, now, she says, "I feel guilty if I stay. If I'm not there at home, Tom gets very confused. The days the computer goes down and he can't write are days he's just really depressed."
"I don't think I'd survive very well if it weren't for her," says DeBaggio, who has completed but not yet sold a second volume of memoirs and is now at work on his third. "When I'm stumbling for the right word, she can help me. She can tell me what was important yesterday. She makes sure I get my medicine," the drugs Aricept and Exelon. Unlike most Alzheimer's patients, DeBaggio takes them in combination, and they have slowed the disease's progress.
"My overall health has not changed," he says. Still, there is no happy ending. "My brain or a part of it is dying," he says. "This is just the beginning of it. Eventually I'll lose it all."
Michael A. Lipton
Andrea Billups in Arlington
- Andrea Billups.
What Thomas DeBaggio would later describe as his "tedious, silent dance of death" began early in 1999. At the nursery he ran in Arlington, Va., he suddenly found he couldn't answer customers' questions about herbs and plants. Soon he was losing track of orders. Eventually he would even forget how to make change. In May of '99, DeBaggio, then 57, sat with his wife, Joyce, as a doctor gave him the grim news: He had Alzheimer's disease.