Los Angeles Times Magazine
COVER STORY

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

By Lauren Kessler
August 22, 2004

"I am so glad you came," Ellen says when I greet her. She is sitting at the dining table sipping juice, a slender, almost frail woman. But Ellen has presence. She has the posture of a dancer—shoulders back, neck elongated, head up—and the gaunt face of a once beautiful woman, with large milky hazel eyes and high patrician cheekbones. She smiles and reaches for my hand. "It is so nice of you to visit," she says.

Ellen is gracious and polite, but the truth is, she doesn't remember me. She doesn't remember that we've visited a half dozen times before, that a few days ago we had tea together, that just yesterday I sat on her bed for a half hour massaging her hands with rosemary mint lotion. Ellen, like the 43 others living at this residential care facility, has Alzheimer's disease. Her short-term memory is shot, and her long-term memory is quirky and dreamlike, with images that are sometimes bright and lucid, and other times so out of focus that she can hardly make them out. Her life is like a puzzle someone took apart when she wasn't looking. She can see some pieces, but she can no longer see how they fit together.

This is what Alzheimer's does: It fractures life. It erases the past. It scours the body of its remembered self. My mother Marguerite had it, and during the last year of her life, I watched her change from a pleasantly addled woman, the dotty aunt who makes you laugh at her occasionally inappropriate remark, to a person who forgot how to chew. This is a grim, dreadful and devastating disease. I know that from personal experience, and I know it because it's what I read—what we all read—about this illness, from the heart-wrenching memoirs about loss to the clinical reports about irreversible brain plaques.

What we learn from medical science is just enough to terrify us. We are told that Alzheimer's is a slow, unstoppable, degenerative brain disease—unstoppable being the operative word. After many years of hard work and many millions of dollars of funding, researchers have plotted the changes in the brain of a person with Alzheimer's—the buildup of insoluble protein deposits in the spaces between nerve cells (plaques), the snarling of twisted protein within the nerve cell (tangles).

Their research has shown that these plaques and tangles first damage areas of the brain that control memory, language and reasoning, and then spread to areas that control sensory processing and conscious thought. They have found that in the final stages of Alzheimer's—which may come as soon as a few years after the first symptoms appear or as much as 20 years later—the plaques and tangles are so widespread and the damage so severe that the brain cannot handle the simplest of functions. They have precise brain scans to prove it, detailed images of shrunken cerebral cortexes, shriveled hippocampuses and enlarged ventricles.

What they don't have is answers to the questions we care about: What causes these changes? Why do some people get Alzheimer's while others do not? How can the disease be stopped or, better yet, cured or even prevented? Without these answers, Alzheimer's remains a frightening kind of disease: an epidemic with no known cause and no known cure. No wonder we're terrified. Even the upbeat Alzheimer's Assn., which for 20-plus years has been championing the cause with thoughtful, consoling material directed to the families of those with the disease, calls the Alzheimer's journey "long, painful and exhausting."

Last night I watched a rerun of a two-hour PBS documentary called "The Forgetting: A Portrait of Alzheimer's." The portrait was unremittingly bleak. Alzheimer's "closes the curtains on a person's life," the narrator said. It is "existentially terrifying" and "relentlessly destructive." It "robs you of who you are."

But I wonder: Is Ellen nobody? How about the others who live in this home?

Questions like these have haunted me since I stumbled through that last year with my mother. Clearly she wasn't living the life I knew, the life we shared. Did that mean she wasn't living a life at all?

This morning Ellen is out with the others in the large, sunny common area that serves as a combination living room, dining room and den for this section of the facility. Here these sections are known as "neighborhoods." Each has 14 private rooms surrounding a sky-lit open area, and each, despite identical soothing color schemes and homey furnishings, manages to have its own personality. Ellen lives in neighborhood 3, which is home to the highest functioning. They can still dress themselves and eat unaided. They can still talk.

"And where do you work?" Ellen asks me, as if we'd just been introduced. I tell her. "Ah," she says. "My husband . . . he used to . . . he doesn't . . . ." It is getting harder for her to find the right words. She looks at me expectantly, as if I might finish her thought. I smile and nod, pretending that she has just said something I understand. She smiles back. "It's so nice of you to visit," she says.

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.

"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.

Stephanie knew that. She ran to his room and searched through the closet and the dresser drawers. Nothing. Then she patted him down and found a book of matches. Tony disappeared into his room and started bashing the big picture window with a chair. "It's safety glass," Stephanie told him. He gave up and went back to yelling. By 5 a.m., he had worn himself out, and the night-shift caregiver got him to bed. For weeks, every night at 7:30, he got combative. Then he settled in and began to live a life.

Before he found Kate, he had a brief fling with Millie. She was a pretty woman with snow-white hair and oversized glasses. Tony and Millie were an item for about a week. But Millie was not demonstrative enough for Tony, not dependent enough. She wasn't much interested in holding hands.

When Tony dumped Millie for Kate, Millie's best friend, Johanna, was quick to console her. "You don't need him," she told Millie. They were sitting on the couch in the living room as they do every afternoon. Johanna was cleaning the lenses of Millie's glasses, as she does four or five times a day. "You're better off without him," Johanna told her.

Now, months later, Millie sees Tony and Kate nuzzling each other, and it doesn't bother her. It doesn't register. She has forgotten that she and Tony were together. But Tony has not entirely lost his eye for Millie. Occasionally, when he finds himself sitting next to her, he will take Millie's hand in his. Tony's other hand is, of course, holding Kate's. Sometimes the three of them will walk together, Tony in the middle, guiding the two women.

The staff—who have been watching this ongoing courtship drama with pleasure and not a hint of condescension—have dubbed this neighborhood "The Old and the Restless."

Debra Cherry, associate executive director of the Alzheimer's Assn. of Los Angeles, laughs when I tell her this story. Then she tells me one of her own. It's about a woman in an L.A. care facility who had been a fabulous concert pianist and was now in the advanced stages of Alzheimer's. She couldn't remember her name, yet she could still play the piano beautifully. One day she played at a senior center, and when the performance was over, she bowed graciously and everyone clapped. When she stepped off the stage, people crowded around to congratulate her. That's when Cherry heard the woman mutter: 'What in the world are they all congratulating me for?'

"She had this moment, and it was wonderful, and then it was gone," Cherry says. "But the point is: She had the moment."

Federal funding for Alzheimer's research was more than $650 million last year, with the National Institute on Aging supporting studies at 29 major academic institutions. The privately funded Alzheimer's Assn. awarded close to $20 million to 90 research projects last year. Pharmaceutical giants such as GlaxoSmithKline, Johnson & Johnson, Eli Lilly & Co. and Pfizer spend additional tens of millions in the search for drugs to combat the disease. The medical community considers Alzheimer's a bona fide epidemic. Because it is primarily an illness of the elderly and because more people are living longer, Alzheimer's is one of the fastest growing diseases in America. The medical and scientific communities clearly have their sights set on cause, treatment and cure.

But some researchers are pursuing another direction entirely. They are rethinking the disease and attempting to re-frame how we view those who suffer from it.

It began with the late British geriatric psychologist Tom Kitwood. In 1997 he published "Dementia Reconsidered," a groundbreaking book that proposed a radical idea: People with dementia are still people. They lose many abilities, but they do not lose their "personhood." This simple notion flew in the face of how Alzheimer's patients were generally thought of by their doctors, their institutional caregivers and their families—as bodies without selves.

I had never heard of Kitwood or his book when I was living through that last year with my mother. His ideas are big in Britain and have caught on in Scandinavia, but they have been slow to make it into the American medical mainstream. Perhaps that's because of his most revolutionary, counter-intuitive idea: that people with Alzheimer's might have something to teach us.

Kenneth Brummel-Smith, chair of the Department of Geriatrics at Florida State University's College of Medicine, is a Kitwood disciple. I reach him at his office after 5 p.m. on a Friday. He is supposed to be home packing for a weeklong cross-country trip with his family. He can't talk long, he tells me. But as soon as he starts in on Kitwood and the rethinking of Alzheimer's, he stays on the phone for an hour.

He talks about Kitwood's idea that the distressing behaviors we sometimes see in people with Alzheimer's may be, in part, a reaction to the way others relate to them—with anger, fear, dread and shame. He wonders whether different responses—love, acceptance, touch, engagement in activities—could trigger other behaviors, ones that are pleasant and benign. He thinks so. He talks about reclaiming Alzheimer's as a positive experience, both for the person afflicted and the family.

Then he launches into Kitwood's notion that we have something to learn from people with this disease. Our "extreme talkativity" and "excessive cognition"—Kitwood's vocabulary—limit our understanding of the world, he says. It may be that people with Alzheimer's, those who have lost coherent speech and linear thought, can take us to a place where emotion and feeling take precedence, he says.

Brummel-Smith catches himself and laughs. "Now I know this sounds way out there," he says, "but look at it this way: Alzheimer's is a detaching disease. It detaches people from their memories, their selves. We can look at that as tragic and awful, or we can change the frame. Consider Zen Buddhism, which is all about clearing your mind, detaching from your thoughts, grounding yourself in the moment. Well, that's Alzheimer's."

Brummel-Smith then recalls a story about a monk who spends part of each day raking the sand in a Zen garden. It is a simple, repetitive act, and he does it the same way every day. He loses himself in it. He lives in the moment. "And we respect that. We see this man as enlightened." Brummel-Smith is talking softly now, and slowly. There is a kind of wonder in his voice you don't often hear from doctors. "Now just suppose we look at a person with Alzheimer's in the same way."

Those with Alzheimer's often like to perform simple, repetitive acts, he says. I tell him about the woman in my mother's care facility, a former university professor, who spent hours folding and unfolding clothes. There's a woman who spends most of her afternoons running a piece of cloth over the dining room table.

"You can look at that and say, 'How tragic,' or you can look at that and say, 'She has found pleasure in this simple act,' " Brummel-Smith says. "She is doing a chore mindfully." He pauses for so long that I think the line has gone dead. Then he says, "Imagine what we'd think about Alzheimer's if we considered that an Alzheimer's person may actually be in a state of enlightenment."

This idea is so mind-bending, so fundamentally different from the general view of a person with Alzheimer's that it makes me gasp.

Could it be that my mother, in the throes of her disease, was not nowhere but somewhere, that she existed in some altered state that was not doom and gloom and despair? It may be that my mother had moments like the moments Kate experiences when Tony strokes her cheek or Ellen experiences when she laughs with Dottie. It may be that she had moments of pleasure and joy. But I missed them. I was so intent on the terrible tragedy we were living through.

On my next visit I work up the courage to visit neighborhood 2, home to those in the most advanced stages of the disease. It is very, very quiet. The women—all but one of the residents are female—seem to spend most of their time dozing, sometimes in their rooms but often in the common area, slumped at the dining room table or chin-to-chest on a couch in the living room. Their mouths hang open. When they're not sleeping, they're wandering, shuffling, padding noiselessly across the carpet in their soft slippers or clean white tennis shoes.

I sit on a couch between Martha and Rose. We are watching a video of the 1964 musical "My Fair Lady." It was the first Broadway show my mother took me to and one of the clearest, happiest memories of my childhood. Martha is a broad-shouldered, sweet-natured woman with immense brown eyes that rarely stay open for more than a few minutes. Rose is smaller, stoop-shouldered, with short, uncombed iron-gray hair, a heavy, impassive face and odd eyes that are simultaneously intense and lifeless. She doesn't respond when I talk to her. She doesn't make eye contact.

We sit like this, silent, Martha dozing, Rose looking down at the floor. I stare at the TV screen thinking about my mother. Then, during one of the musical numbers, I notice Rose tapping her foot. She isn't watching the movie, but she is keeping perfect time. During the next number, she keeps the beat by gently slapping her hand on her thigh.

The neighborhood caregiver is leaning over the couch, watching. "Why don't you ask her to dance?" she says. The tone is matter-of-fact. There is no undertone of "wouldn't that just be so sweet?"

"Shall we?" I ask Rose before I overthink the moment. I grab her hands and pull her up gently. Eliza Doolittle has just launched into "I Could Have Danced All Night." Rose and I hold on to each other like girls at a middle-school dance. I have watched her wander the neighborhood, heavy-limbed and shuffling, an old, old woman at age 69, so I am amazed that she is light on her feet and graceful as we start to waltz.

I am not so graceful. I keep count in my head—one, two, three, one, two, three—and sneak looks around the room to see who might be watching me make a fool of myself.

Martha is asleep. The caregiver is in the kitchen getting a cup of tea. It's just Rose and me. She is a good dancer. I stop counting to myself. I close my eyes and let Rose lead.

*

In this article, the names of most of the residents of the Alzheimer's care facility have been changed to protect their privacy. However, the Los Angeles Times Magazine has verified the identities of the patients and the circumstances described in the article by speaking with facility administrators.