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Dancing With Rose

Cover Story

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).

Toward the end my mother lost coherent speech, but she never stopped talking. She would repeat whatever was last said to her, repeat it and repeat it, dozens of times, scores of times. Just once, I counted the repetitions. She said "watch your step" 102 times. It embarrassed me. It drove me crazy. Like most family members affected by Alzheimer's--there are 4.5 million Americans with the disease right now, with numbers expected to double by 2030 and nearly quadruple by 2050--I was wedged between grief and fear.

When I come to neighborhood 3 a few hours later, Ellen is having a hard time. One of her daughters lives in Denver, where Ellen used to live, with a lovely house and a kind husband. Just after I had left Ellen sipping her juice, her daughter had called long distance. She phones with good intentions, but the calls jolt Ellen out of her dreamy, hazy present. Her daughter says there's a blizzard in Denver. Ellen suddenly remembers Denver. She realizes that this place is not her home.

Now she sits perched on the edge of her bed. The swing-shift caregiver, Angela, is kneeling in front of her. "I want to go home," Ellen says. I am accustomed to hearing her speak calmly and pleasantly. I hardly recognize this voice. It is bitter and combative.

"You are home," says Angela, putting a hand on Ellen's knee. "This is your home."

"No. It. Is. Not."

A second caregiver comes to help. "How about some ice cream?" she asks. "We're serving up sundaes right now."

Ellen gives her an icy stare. "No. I want to go home."

Caregiver 2 tries another idea. "Maybe you'd like to take a little nap?"

"Don't talk to me about anything else," Ellen yells. "I want to go home."

Dottie, whose room is next door, hears all this. Dottie will be 88 this year, but she could easily pass for 65. She is a compact, athletic-looking woman who has managed to keep just the right amount of meat on her bones. Her coloring is peaches and cream, her skin smooth and soft. Dottie is so competent, so independent, her language so perfect that I wonder why she's here.

She knocks, walks in the open door and takes over. Ellen wants to call her daughter and say she wants to go home. Her daughter will come pick her up, and that will be that. Dottie goes along with the fiction--or does she know it's a fiction? It's hard to tell. Dottie must be here for some reason.

Dottie grabs the telephone from the night table and sits down next to Ellen. "Let's just make that call," she says brightly, as if nothing were wrong. Ellen holds the receiver. Dottie punches some numbers. Then she punches some more numbers. They sit like this for a minute, three minutes, five minutes, Ellen holding the receiver to her ear, Dottie punching numbers. They are talking in low tones, conspiring. Dottie is laughing about how she can't figure out how to use the phone. Is Dottie pretending? If so, it's a wonderful, generous pretense. It doesn't seem to matter that the call is not going through, that Dottie is just pressing random buttons. Ellen is involved in the moment. She is holding Dottie's hand, smiling now, having a little chat with her friend.

When I talk to Linda Boise about my time at the facility, she says: "My own husband told me, point blank, 'If I get Alzheimer's, just shoot me.' " Boise is a research professor and director of education at the Layton Aging & Alzheimer's Disease Center at Oregon Health & Science University, one of the country's top federally funded centers studying the disease. Still, she's not surprised by her husband's attitude.

"What you hear in the media is: This is the most godawful disease you can have," she says. Our picture of Alzheimer's begins and ends with horrifying symptoms and behaviors: memory loss, confusion, loss of language, of logical thought, anxiety, restlessness, agitation, incontinence, depression, delusions. Those with Alzheimer's are at best emptied vessels and at worst tortured souls.

"But a number of the people who work with Alzheimer's don't think of it that way," Boise says, choosing her words carefully. "People with Alzheimer's don't have the ability to remember yesterday or plan for tomorrow, but that doesn't mean they don't have the ability to enjoy right now. A lot of people don't understand that."

Among those who do understand is Susan Stuart-Clark, a longtime "Life Engagement Coordinator" at a residential facility specializing in all memory disorders. How can you work in such a depressing place? she is constantly asked. You must be an angel.

That's not how she sees it. Stuart-Clark is an extravagantly perky woman who has formed such an emotional attachment to her residents that last year, when she married the retired minister who comes in to lead weekly "praise sings," she staged a complete re-creation of her ceremony for them.

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