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Cover Story

Dancing With Rose

A Strangely Beautiful Encounter With Alzheimer's Patients Provides Insights That Challenge the Way We View the Disease.

August 22, 2004|Lauren Kessler | Lauren Kessler last wrote for the magazine about the Coast Starlight train. She directs the graduate program in literary nonfiction at the University of Oregon. Her most recent book is "Clever Girl" (HarperCollins, 2003).

"There's a lot of things I can no longer do," she says. "I'm 57. I used to be a head cheerleader. I used to do back flips and splits. I can't do that anymore. OK, so Alzheimer's people can't do certain things. That's the way it is."

She and the staff, along with an increasing number of professional caregivers, have come to think of the disturbing behaviors often associated with Alzheimer's--restlessness, agitation and combativeness--not as natural consequences of the disease but as unmet needs. It's almost a mantra for them: Behaviors are unmet needs. "Everyone needs to be loved. Everyone needs to be needed. And everyone needs human touch," says Stuart-Clark. "It doesn't matter how old you are, or if you have a disease, or if you remember your name."

We're sitting in the cheerfully landscaped indoor courtyard of the care facility. Stuart-Clark interrupts herself to call out to Duffy, who is wheeling Vernita down a path toward us. Duffy, a jovial man in his early 80s, does not have Alzheimer's. Vernita, his wife of 61 years, does. She is a sweet-faced woman who often cradles a plastic doll and seldom speaks. Duffy sees her every day and talks with her every night.

"Vernita, you look beautiful today," Stuart-Clark says, reaching out to stroke her arm. "That blouse is the most gorgeous color. Look at how it brings out your eyes." Vernita smiles. Stuart-Clark gives her a hug. Duffy's hands rest on his wife's shoulders for a moment. He smiles too. Then he wheels her back toward her room.

"All those cliches about 'days are only a series of moments' and 'carpe diem,' well, they're true," says Stuart-Clark. "That's really all there is for any of us, those moments. And that's how Alzheimer's people live, in the moment and from moment to moment. And you know, when I'm here, that's how I live too."

I next visit neighborhood 4, another section with "high-functioning" residents. This is where Kate lives. She was one of the original Rockettes at Radio City Music Hall. Back then, she was a Lucille Ball redhead with a perfect oval face, a tiny waist and the requisite shapely legs. Kate was married to Tony, a skinny Sinatra look-alike who played trombone in Vaughn Monroe's orchestra. Tony was a hail-fellow-well-met kind of guy, a partyer, a big drinker, a lot of laughs. They were married for 45 years. But Tony has been gone for 15 years, and Kate, now a tiny, wispy-haired woman in her mid-80s, has another man in her life, also named Tony.

This Tony, however, is built like a fireplug, which is appropriate, given that he used to be a firefighter at McClellan Air Force Base outside of Sacramento. Kate and Tony sit side by side on a big couch in the living room holding hands and watching a Shirley Temple movie on TV. All day, every day, they are never far from one another. They eat together, Tony sometimes feeding Kate. They take short walks together. They go on forays into the adjoining neighborhood. They listen to a piano concert sitting side by side. They suffer through group sing-alongs together. Kate doesn't sing because she's a little too out of it. Tony doesn't sing because, he tells me proudly, the only way he can carry a tune is in a knapsack. They move together from couch to chairs back to couch again. Tony pats Kate's cheek. Kate strokes the top of Tony's head. They lean toward each other and touch dry lips. When Kate has to go to the bathroom, Tony walks her there and waits outside the door. When Tony goes to his room to look for something, Kate follows him in, prompting Stephanie, the caregiver, to make a dash for them. Kate and Tony alone in a room have been known to try to do more than kiss. Kate thinks this Tony is her old Tony, her husband.

What Tony thinks, nobody really knows. He lost his wife 17 years ago. She suffered a heart attack at home, and Tony, who knew CPR, couldn't save her. That fact haunted him until Alzheimer's at first blunted and then erased the memory. Now Tony no longer remembers the life he used to live, but he does remember that he is a person who takes care of people. And so he takes care of Kate. Doing this gives his days a focus. It calms him. He is pleasant and helpful and often congenial, very different from the man who came here seven months ago.

Tony arrived his first day at about dinner time. By 7:30, he was yelling and tossing chairs around the room and picking fights.

"You can't keep me here," he screamed at Stephanie when she tried to calm him that first evening. "This is a prison, and I'm going to get out." The anger came and went. By 11 o'clock Tony had worked himself up again, deciding that the best way to get out of this strange place, this prison, was to start a fire. And he was just the guy to do it.

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