The reluctant expert
No one wants firsthand knowledge of Alzheimer's disease. But since he has got it, one patient is finding ways to share with others what he has learned.
By JOHN BARRY
Published March 11, 2007
Ever since his daughter leaned over the car seat six years ago and whispered to her mother, "There is something wrong with Dad," Richard Taylor has become an important man. He's invited to international conferences. He travels the country. He's asked to inscribe personal notes in his new book.
"Thank you for your interest and support," he writes. Then he has to ask, "Spell your name for me." His spelling is gone.
Richard Taylor, retired Houston psychologist, lives a kind of Flowers for Algernon story. He is a Charlie Gordon, ordinary man turned seer - all the while doomed to watch the light of his own brilliance fade even as the little lab mouse Algernon grows weaker in his cage.
When his daughter's concerns sent him to the doctor in 2002 at age 58, the diagnosis was Alzheimer's disease. He has now written about its inexorable advance in a book called Alzheimer's from the Inside Out Health Professions Press, $18.95, 224 pages.
People want Taylor to describe what's going on in there. Can he see the light flicker and fade? And there are those like him, other Alzheimer's victims, who want him to help their wives and husbands and children understand their reality.
So he does all that. "Essentially I try to tell them what it's like," he said by phone from Houston, the morning after returning from speaking in Illinois and Michigan. (He's speaking in Largo on March 26 and 27.) He tells them what it's like in the first stage of Alzheimer's, and how it feels being pushed into the second stage. There's a final, third stage of Alzheimer's. When that comes, Taylor will be unable to describe it to anybody.
He reads to them from his book: "I imagined, maybe hoped, that some day I would wake up and a heavy velvet curtain would have fallen during the night. . . . Instead, right now, I feel as if I am sitting in my grandmother's living room, looking at the world through her lace curtains. From time to time, a gentle wind blows the curtains and changes the patterns and I cannot see through them. . . . This entire filter keeps shifting unpredictably in the wind."
As a psychologist (he calls himself a former psychologist), Taylor can call upon scientific detachment, the ability "to step outside myself" to consider Alzheimer's intriguing biological components. That part of him appreciates his early diagnosis. Another part of him wishes he'd never found out.
"Practically speaking, it's of no help."
It's harder for Taylor to explain to his audiences the gulf that sadly, inevitably widens between patient and family as Stage One blends into Stage Two. Families yearn for the father or mother who was. But the person with Alzheimer's can only be the mother or father he or she now is.
"Wives want their husbands back," he says by phone. "Husbands want their wives back. They want them to remember, and they're hell-bent on correcting them, and trying to keep them as they were."
He writes that he has withdrawn from his family. He is most always frustrated, sometimes angry at exactly what or who he doesn't know. He once called himself "the great communicator." Now he blurts hurtful things. "They didn't ask for this," he writes. "They don't deserve it. I didn't want to change, especially like this. I just do it."
Spouses afflicted too
Linda Taylor, his wife for more than 20 years, has not been spared.
"Caregivers and individuals both travel down the same Alzheimer's Boulevard," he writes. "Sometimes we can walk hand in hand, and other times we are miles apart. We will each end up at different destinations. We label the trip with the same name, but in fact we are on two different journeys. Mine pulls me away from her and keeps her from walking next to me. . . . We don't and can't really walk in each other shoes."
He doesn't have any magic answers. Over the phone, he says, "I just live with it."
Linda says it's hard for her husband to understand or acknowledge that she lives with it too.
"We both have to deal with this disease," she says from Houston, where she works as a labor and delivery nurse. "We each chose a different way. He's always been 10 steps ahead of me. It took me longer to accept it, and that made him very frustrated and angry.
"It's his opinion we're not on the same path. I see it differently; it affects us both. That makes him frustrated. We've not changed into the family he expected and wanted. He wanted us to rally around him, to do all we can do to help him. But I still have to be the provider. I'm 10 years younger. I have a demanding job. It's all time that I can't give to him.
"He has trouble making it not all about him. Alzheimer's is now who he is. He's an Alzheimer's patient, an Alzheimer's advocate, an Alzheimer's husband. It's like an obsession. He's been robbed of his dream, and now his dreams have to be about something else. It's been hard to find the path for new dreams. He's always changing. Just when I believe I know who he now is, he has changed.
"We both are on the Alzheimer's path. I'm not dying. I'm just facing the consequences."
Connecting to the past
As advocate, Taylor turns to other patients. Usually, they're much older than he is. Typically, families tell him about how dad or mom can't keep track of who's who, who's alive and who's dead. Someone with Alzheimer's may talk about a dead mother as though she's still alive. "The family won't honor the delusion."
He can only guess at what's going on. Maybe the person simply feels something that he or she associates with a memory of mother. "But the family doesn't try to probe. They jump right to 'Mother's dead.' They move heaven and earth to prove it, even getting out the death certificate.
"Finally, the person says, 'Screw it, I'm never going to get them to understand.' The person just acquiesces."
Families bring photo albums and old home movies to the nursing home. They spend their visit reminiscing. "Then the family goes home with the pictures and the person with Alzheimer's goes back to his room, never having been moved into the present.
"He (the Alzheimer's sufferer) sees that best way to get along is to live in the past. But that's what he's having trouble with in the first place."
Taylor knows he's getting there. He watches Charlie Rose at night and can't remember what he saw the next morning. He has to write everything down. His best barometer is his bridge game. He plays once a week in a bridge club that has three or four members with Alzheimer's. "We can all see by the way we bid where we are in our continuum."
Taylor refuses to read any of the many recent news stories about Alzheimer's breakthroughs and possible cures.
"All those things are hyped up. The language is way inflated. Every finding takes us one step closer to a cure, but there are 20-million steps. We don't understand dementia yet. We don't really have a clue."
What to do now
Recent accounts of studies that show the benefits of "brain exercises" like crossword puzzles aren't any more encouraging.
"We're already paranoid to begin with, and then we're told: 'If we'd only eaten broccoli.' "
What's left for Alzheimer's sufferers and their loved ones was scratched on notes to himself that Taylor made on his recent speaking trip to Michigan:
Stand up! Speak Up! Do not become a victim of your own silence. Speak for yourself and those who will follow. Ask Carers and Friends to do the same.
Today will never be here again. Time is of the Essence!! Use it wisely!!
John Barry can be reached at (727) 892-2258 or firstname.lastname@example.org.
IF YOU GO
Author Richard Taylor is visiting the Tampa Bay area to speak and read from his book, Alzheimer's from the Inside Out. He will appear at Arden Courts of Largo, an assisted living facility, 300 Highland Ave. NE, Largo, at 7 p.m. March 26 and 2 p.m. March 27. The public is welcome. For information, call (727) 559-8411.