By Amy Silverman
By Olivia LaVecchia
By Monica Alonzo and Stephen Lemons
By Chris Parker
By Michael Lacey
By Weston Phippen
Karla Elling wanted to show her appreciation to the nurses at Scottsdale Village Square who had treated her father with dignity during his final days, as he struggled with dementia. Most people would have sent a fruit basket. Elling sent poets.
Elling -- a spirited woman with hippie-long gray hair and an ancient orange van -- had been running community poetry workshops in schools and homeless shelters for years as coordinator of Arizona State University's creative writing program.
But she'd never thought of doing it in a place where fathers don't even recognize their own daughters, a place where people with Alzheimer's disease and other forms of dementia come to live until they die.
Elling and Joy Phillips, then the director of nursing at Scottsdale Village Square, had a hunch it would work, though, because of a patient named Alice Mae Lisi.
The late stages of Alzheimer's had stolen Alice's ability to talk, but she could still walk, and she wandered constantly around Vistas, the locked ward at the nursing home. One day, as Alice paused at the nurses' station, on a whim Phillips handed her a piece of paper and a pen, and Alice began to write. She wrote a few lines, then walked, then returned to write more. The scribblings made no sense to Phillips, but Alice seemed more at peace, relieved to be expressing herself.
So Elling and Phillips gathered a few Vistas residents, and once a week, three ASU-trained poets prompted them with questions, stimulated their senses with props and acted as scribes for those who could not write. They added line breaks to make the writing look like traditional poetry, but the words came directly from the dementia patients themselves.
That was 1992, years before Ronald Reagan's family admitted that the former president was losing his mind because of Alzheimer's, turning the disease into a household term overnight.
Long before researchers proved that dementia patients are much better off reminiscing in an imaginary world than listening to the daily news read aloud in the real one, Karla Elling and her poets knew it intuitively.
"I knew my dad," Elling says. "And I knew that when I talked to him, even though he didn't know me, I could talk the old stories, the old names, the right towns, and he would come up with connections that just blew me away. . . . He was happy when we could go through these old stories."
As a daughter, Elling knew too well the struggle family members go through to communicate with a loved one who just doesn't make sense anymore. Who better, she thought, to help draw out these connections than poets, who strive for what often comes naturally to a person with dementia: expression that is nonlinear, emotion-packed, inhibition-free. And who better than people with dementia to teach poets to write more freely?
"It's like every person is a treasure, and you have to figure out how to get in there, even if it's briefly," Elling says.
Alice proved her right. In that first workshop, Alice created a jewel that was published nationally and hung on a wall at Juniper Library in northwest Phoenix. It is called "Cloves":
A little girl think year
with some grass amid the house
and dark vegetables getting
further away in the year
for a green thought.
In the spare time,
in the house next
to the spruce and the wheat.
In the urgent house,
the house of cleaning,
the house in the trees
in the time of the heart
amid the fish.
In that place is
a good trip
on this paper.
Alice had died by the next semester. But Kara Elling kept sending poets.
Elling hand-picked topnotch nursing homes whose staff understood the value of activities. And she hand-picked the poets, sending them into the nursing homes with only the briefest facts about dementia and virtually no teaching instruction that might inhibit trying something new. With props ranging from real flowers to fake bugs, they have recorded poetry in bound notebooks, on video, in performance art pieces. A $6,000 grant this past school year sent six poets to three nursing homes.
This summer, at Elling's behest, two of the poets, Argie Manolis and Trish Murphy, are working on a book explaining the techniques used over the years, with the hope that caregivers, family members and other poets can apply this loosely conceived model.
Terry Lisi, Alice's son, thinks that's a great idea. He didn't learn of his mother's poetry until after her death, but he is delighted to have it now, and recalls that cloves were her favorite cooking ingredient; growing up, the Lisi house always smelled like cloves. Lisi also believes teaching families how to write poetry with Alzheimer's patients would be valuable.
"When they get to that stage that my mother was in -- and let's face it, they all get to that point, some sooner than others -- as a loving family member, you don't know what to do [when you visit]," he says. "You just kind of stand there and look at your feet."
In writing the book, Manolis and Murphy face the challenge of explaining why anyone should run poetry workshops for people who don't know what they are creating and can't appreciate it once it's finished. Does it matter that creative intention is lacking?
Is it poetry, after all, if you're a poet and don't know it?
Maidi Terry was stuck. The ASU poet had visited Clairbridge -- a Tempe nursing home devoted to caring for people with dementia -- several times last fall and couldn't persuade Lenore to write poetry with her. Lenore, a petite woman with short gray hair, lived in a neat room surrounded by photos of happier, younger times. She was crabby, aloof, unwilling to try.
"I can't write poetry," she scoffed.
Terry sought advice from one of her professors, Alberto Rios, who suggested giving Lenore bags of spices to elicit memories. That didn't work. He suggested a free-association method he uses in class, so Terry cut photos from magazines and words from crossword puzzles and laid them on the table before Lenore.
"What do you want to write about?" Terry asked.
"Hornets," Lenore said.
"What's good about hornets?"
"If hornets weren't insects, what would they be?"
"Kites, clouds, snow."
With a few transition words from Terry, Lenore 's words became a poem. The next time Terry stopped by her room, Lenore was happy to see her, though she didn't know Terry by name. Terry later left town, but Lenore willingly attended two other poets' workshops all spring.
Did Lenore and Terry's other Alzheimer's patients really understand the concept of writing poetry? "Yeah, they did in those momentary discussions," Terry says.
She wrote their poems on cards for them to display in their rooms. They always wanted to give them away.
"Some of them would say, "Send it to my parents.'"
Hornets are like red and purple,
pale purple and white
yellow to bring out the motherly qualities of it --
lemon moon hats of gold,
hornets look like winter's meteors,
kites, clouds and snow.
The simple acts of waking, bathing, dressing and eating breakfast are enough to exhaust the 80- and 90-something residents of Scottsdale Village Square's locked ward. At 10:30 on a recent Thursday morning, most of the two dozen residents in the recreation room are dozing -- propped up in chairs, heads resting on tabletops.
The lights are low in the big room; no one is paying attention to a doll and bassinet in the corner or the activities that go on 12 hours a day at the nursing home.
A white-haired woman in a cardigan, sitting across a table from a slumbering man in a Peanuts sweat shirt, has fallen asleep with her head in a puzzle -- a basket filled with plastic pieces in the bright colors of children's Legos.
Alzheimer's disease, the most common form of dementia, is a puzzle itself. Although the disease was discovered in 1906, today the only certain diagnosis comes through an autopsy, when doctors are able to see the tangles that form in the brain and damage the nerve cell connections. These connections give us control over virtually every intellectual and physical function. Without them, we lose mind and body.
The damage usually begins with short-term memory, then spreads. Eventually, it can actually cause death, as the brain tells the heart to stop beating or the lungs to stop taking in air.
The Alzheimer's Association estimates that four million Americans have the disease: one in 10 people over 65 and nearly half of those over 85. That's a particularly troubling statistic given that there's no cure, and few drugs or other treatments can slow the disease once it reaches the middle and later stages.
The last 12 years of the Alzheimer's patient's life mirror the first 12 years of a child's life, according to William Arnold, a professor of communications at ASU. That is why many Alzheimer's patients end up in the fetal position as they approach death. And thus, the baby doll and the bassinet, the big-piece puzzle.
Arnold studies ways to improve communication in early-stage Alzheimer's patients, hoping to help patients and families recognize what is happening, to know what they can expect and figure out what plans they need to make.
He says it's pointless to focus on notions of creativity in the later stages of the disease, because patients simply don't know what they're doing.
But does it matter for these patients? Is living, or reliving a moment, an act of poetry itself? Must you remember today for something you've created today to have value? And what about the joy of the moment?
When ASU poet Tracy Trefethen led a workshop in 1993 at Scottsdale Village Square, she and her partner used water as a theme: They put out bowls of water to touch and salt water to taste, played a tape of ocean waves and showed the residents artwork depicting water. During the first session, a resident named James suddenly remembered that for much of his life, he had played jazz saxophone on cruise ships. None of the nursing home staff had known.
James sang and wept and spoke. "He said, "Thank you, thank you so much, for helping me to remember this,'" Trefethen recalls. ". . . Not that he needed to remember it the next day or the next hour and carry it forward, but he got in touch with a part of himself, and I think that gave him a little relief."
On Trefethen's second and third visits, James still seemed affected by his revelation. But by the fifth week, he was slipping.
James died soon after.
Dan Salontai, a 24-year-old first-year master's student, was one of the youngest of the teacher-poets who participated in the workshops this past year. He admits the sessions depressed him, and he didn't have much to say to the old people, letting the other poets take the lead. Some of the patients' behavior made him uncomfortable -- like the old woman who suddenly planted a big kiss on his cheek, and the patient who asked him to find her money.
But Salontai says it was worthwhile. He saw what Trefethen saw, memories surfacing and bringing pleasure with them. He remembers Herman Sponcel, a Clairbridge resident who recalled suddenly that he could play the harmonica. None of the staff knew, even though the poets found half a dozen harmonicas -- all polished, all in key -- in his top drawer.
No poetry came out of the sessions with Herman, but he had a fabulous time playing and singing gospel for the poets.
"Supposedly [the staff] heard him play after that a few times, which is pretty cool," Salontai says. "The poetry -- that's great and everything, and it's good if you get their thoughts down and stuff like that, but I think stuff like [Herman's experience] is more important."
His favorite part of the workshop was watching the group have a good time. "You got the feeling that they were enjoying themselves and having fun. It wasn't necessarily about anything else, other than the fact that they were having fun."
Argie Manolis enters the dim cool of LaVillita nursing home in central Phoenix on a hot April Tuesday. In the locked ward, men and women in street clothes and bedroom slippers shuffle quietly between their own rooms and a large sitting area. And there, they sit. Oldies play on the radio; no one speaks, a few residents doze. Attendants mop the linoleum around their feet.
Manolis sets up her materials -- a metal mixing bowl filled with the contents of her spice rack at home -- in the adjacent kitchen. She arranges the jars on the table, then waits.
This is the second year she's taught these poetry workshops, and Manolis has learned to be patient.
"I did not, to be honest, want to do the Alzheimer's thing at all," she says later. "I was totally turned off by the idea. I thought -- I mean, this is terrible to say, but, "What's the point?'"
Karla Elling begged, and Manolis agreed to give it a try. She loved the idea of community outreach. For years, Manolis' grandfather -- a butcher by training -- created an oral history of the family's hometown, Akron, Ohio, as a hobby. Manolis wanted to give something back, too.
But she worried about her students' oblivion to the task at hand: "Are we going to be taking their words?" she asked herself.
The first several sessions were awful; Manolis tried to quit, but Elling pushed her to continue. After a few weeks, Manolis got over the sadness of the nursing home and let go of her expectations. These students were not going to learn, Manolis realized. "So what that leaves me with is that I spend an hour of quality time with them. And I almost think that it doesn't matter what we do."
Manolis doesn't care whether she walks away with poetry. But she usually does.
She brings flowers or old photographs, something to serve as a conversation piece. The spices work well today. A slender, brown-haired woman approaches the table and sits down.
Manolis greets Ella by name. She remembers the woman from previous sessions. Ella doesn't appear to remember her. Unfazed, Manolis starts a conversation.
"Did you used to cook, Ella?"
"Stuff that doesn't take too long," the woman answers, then, without looking at Manolis, begins sprinkling spices on the table, like she's making a sand painting. The aroma of the spices barely masks the smell of bleach in the air.
A man named Frederick sits and watches Ella for a while. He admits that sometimes he gets her confused with Bob Hope. (Ella looks nothing like Bob Hope, but Frederick does bear a striking resemblance to Douglas Fairbanks Jr.)
"My memory is bad. They might have told you that," he says, leaning over like it's a secret. Frederick picks up the jar of nutmeg. "Is this something to stop you from smoking?" He insists he can't smell, but when Manolis waves coriander under his nose, Frederick's head snaps back.
"Phew! I'm a pretty good actor, aren't I?" he asks, twinkling. He motions to another man, Lyle, who has joined the group.
"Now, he's a good smeller."
Lyle's wearing a Kauai Yacht Club polo shirt and has fading green tattoos on his big forearms. He and Manolis start talking about mosquitoes and flies. Later, Manolis transcribes her notes and finds a poem, which she calls "Garlic":
A fellow in Yuma told me a secret
about garlic. He said it leaves a taste in your mouth,
in your skin. So strong, it keeps the flies away.
As Lyle and Manolis chat, Ella continues to pour spices onto the table, mushing them with water and paper towels into a runny papier mâché. Frederick announces that the sage smells like stuffing, then says he has to go. "My time is kind of limited." He pretends to get up, then sits back down and laughs. He made a joke.
A moment later, Frederick is sad. "Tomorrow I won't remember your visit," he says.
Manolis shuts her notebook, cleans up Ella's mess, puts the lids back on the spices, puts the spices back in the bowl and lingers at the table for a few more minutes. A skinny woman in a red sweat suit walks slowly toward the table, roughly rubbing her crotch, which rustles loudly with the sound of a plastic adult diaper. She sits at the table and dips her hand into the bowl of Manolis' spices. Manolis waits for her to finish, then picks up the bowl, says her goodbyes and takes the spices home.
William Arnold -- the ASU communications professor who does Alzheimer's research -- has never observed one of Karla Elling's poetry workshops. But he's firm in his opinion that people in the later stages of Alzheimer's are incapable of writing poetry. Sure, the workshops are valuable to Alzheimer's patients, he maintains -- as valuable as pet therapy or a sing-along.
"The benefit is to give them contact, to nurture whatever is left," Arnold says. "When an infant cries, they get attention. They get cared for, they get held. And all too often, Alzheimer's patients, when they're getting back to the latter stages, don't get that. If the infant can recognize and get comfort, then it seems to me that probably the Alzheimer's patient can, too."
If they can't judge or even remember what they have written, is it poetry?
"I write poetry all the time," Arnold says." Sometimes it rhymes and sometimes it doesn't, and I guess the only value is to me. And unfortunately, I think for the Alzheimer's patient, they may not be able as I am able to sit down and like what I do or dislike what I do. They can't like or dislike what they do because they probably don't even remember they did it."
Trish Murphy, one of the poets working on the book about the workshops, disagrees with Arnold's notion that the patients aren't poets. She acknowledges that her "students" don't consider themselves poets. She tells them she has come to write poetry with them, transcribes what they say, then reads it back as poems.
"They're surprised, and they're not always all that impressed, either," she says, laughing.
But the best poetry is accidental, she says, or at least unintentional.
"I think that so much around us is poetry," says Murphy, who teaches in ASU's creative writing program. "Can you be a poet without knowing you're speaking in poetry? Definitely. Can you talk to other people and hear poetry that isn't even there, when they speak? Yes! That's how people fall in love -- or have one-night stands."
Salontai, the young poet who struggled with the workshops, tells of a session working with spices so that the patients could smell them and touch them and talk about what memories they evoked. A woman named Gladys was in the group.
"I had a bay leaf, and it had a hole toward the top of it. And I was looking at it, and I'm like, "Oh, this is kind of cool,' and she grabbed it and she was looking at it.
"And she just said, "Culinary archery.'"
The poets plan to make it the title of their forthcoming book.
Karla Elling makes it clear that her priority -- her mission, in fact, as director of a creative writing program -- is to create an enriching experience for the ASU poets. It has worked.
Tracy Trefethen, who helped James discover his saxophone playing, says the workshop was one the best experiences of her 11 years as a teacher. She was so into it, she felt like she had Alzheimer's. Couldn't find her keys, her purse, the door.
After James died, Trefethen and her partner intermingled their journal entries with the words of James and other workshop participants, creating a performance art piece, which included a poem Trefethen wrote about the experience:
I am seeing pink
louvered windows and baskets
of plants hanging from
wrought iron, slow fans and
the dim yellow light on bodies
drawn with sweat.
I think how watery it is
to work with them . . . so many
loose connections, loping
around, catching at one
another in my head . . . to
describe being with them
alters it and that is what
it is like to be with them
To get altered, fluid leaping
loosing threads, leaping and
loosing until the very notion
of loss is altered. It is
I think I have fallen
in love with that crotchety
Learning has taken the poets to darker places, too.
Trefethen says that in the last week of her workshop, the poets ventured into dangerous territory: death. They brought in animal skins and bones and asked the patients what they thought about death.
"We thought we were being risky, talking about death with them, but they really opened up," Trefethen recalls. "I think we had one guy, he kinda left and went AWOL, tried to get over the fence. And the nurses were angry at us, because we didn't know it was a dangerous situation fast enough. . . . It's a locked ward, so we figured, "Where can he go?' But he was a really tall guy, and he was actually getting over the fence."
The session elicited some evocative lines.
Death. I think people will read this. But they won't do anything with it.
Death is delicate. We wear it out by talking about it.
This is a lazy town. I fit in pretty good here. Not afraid of death. Death is not a mean thing. It's a lovely feeling. My image would be sewn to me.
While the other poets arrive with a bowl of spices or a bouquet of flowers, Carol Smith can barely carry the two big boxes she fills with props for each of her poetry sessions at Scottsdale Village Square.
Smith found poetry rather late in life, after decades as an elementary school teacher. When Karla Elling asked last year if she'd lead an Alzheimer's workshop, Smith worked up a full-blown curriculum.
She read books about Alzheimer's and learned that later-stage dementia patients are easily confused, antisocial and generally incapable of independent thought and creativity. But Smith decided not to treat her students that way and see how they reacted.
One day not long ago, she showed them a Robert Mapplethorpe photograph of hands and a famous picture taken of Pablo Picasso in which -- real hands hidden under a table -- he poses with breadsticks for fingers.
With help from Smith, the Alzheimer's patients traced their hands, then talked about ways in which lighthouses are like reaching hands. They wound up the session with "He's Got the Whole World in His Hands."
Another day, Smith brought miniature furniture and asked her students what it would be like to be a chair or a window. She told them windows had always reminded her of eyes, and then asked Ilene, one of the students, "What would you see if you had an eye in the palm of your hand?"
It would see the curves in your fingers,
It would see the wrinkles in your hand
And the rings on your fingers.
It would tell you, maybe, how long you're married.
It would see the scar you got when
You were in the first grade and had permission
To go through the neighbor's yard to get to your yard
Where the lady had a bunch of cats
And the cats were turned loose
And would come into your yard
Usually if you had something in your yard
That they could eat.
No, the cat didn't scratch me.
The lady died a long time ago
And it seemed to me
They'd already written the story about it.
This from a woman who spends much of a typical day incessantly asking anyone who will listen, "Are we going to Mass today? Are we going to say the rosary? Are we going to church?"
Smith was amazed by the workshop's success. So was Kevin Mulqueen, who has spent the past eight years on Scottsdale Village Square's activities staff. Eva, an elegant woman in her mid-90s, had to be persuaded to join initially, but the sessions were wonderful for her.
"She came out of her shell totally," Mulqueen says. "Before, she was very quiet. [Afterward] she stayed up a lot more, with the other ladies in the dining room area."
He's noticed that many of the workshop participants socialize with one another now, even outside the sessions; he takes them out in a van on weekends, and they make up stories about Peggy, the nursing home's dog.
Smith framed the finished poems, and they hang in Vistas' rec room.
Today's theme is bugs. Smith's students are waiting in a cozy, quiet room, seated at a pretty white dining table with upholstered chairs covered in thick, clear, easy-to-clean plastic. Mulqueen joins the group.
Smith has been coming for several months now, and she knows her students well -- regulars like Dolores, who's dry-witted and always wears a purple visor emblazoned with her name, and Marge, who has trouble speaking but loves to conduct the group's singing sessions. There's a new face at the table today: Horace.
Before the bugs come out, Smith wants to warm up the group, which she often does by flipping through calendars (she bought them cheap, after the first of the year). Today she's brought a calendar with a camouflage theme: nature scenes with hard-to-recognize animals.
Smith insists she comes into these sessions without expectations, but she's obviously delighted when Horace looks at the picture of a wolf hiding in the woods and says, "It looks like a rabbit with wings."
When Smith flips the page to a picture of dense trees, Horace decides it looks like a curtain. Smith practically swoons; Alberto Rios' latest book of poetry is called "Curtain of Trees."
And the bugs haven't even come out yet. Smith knows that trying to teach a group of 80- and 90-year-old ladies (Horace is the only man) about spiders and flies could be tricky, but she eases them in with a mix of science and fantasy. Smith's sessions -- which have included lessons about the solar system, dinosaurs and jungles -- are fast-paced and full of facts, but she does that, she says, only to stimulate the patients' senses. Her students are never asked to repeat facts, only asked what they think about the sun, or what a dinosaur reminds them of.
Smith lays a pile of oversize cutouts of cartoon bugs on the table -- a butterfly, a spider, a glow worm. The bugs are bright-colored and goofy. The students giggle; a couple pick up the bugs and look at them. Others look blankly at Smith.
Next comes a book from the Discovery Store, with intricate drawings of bug parts. Smith slowly turns the pages, holding the book up so everyone can see.
She puts it down and asks a question: "What if bugs had wheels?"
Dolores laughs. "We'd have to have oil cans out all the time."
Smith pulls out matchbox-size toy bugs -- a spider and a fly -- on wheels. She puts them down on the table, demonstrates how they move.
"Can I jump up on him?" Marge asks.
The bugs tilt precariously, and it's hard to push one without knocking it over. Gloria is finally persuaded to try, and when she succeeds, she raises her fists in victory.
"I wanted everyone to love bugs today," Smith says.
"They're beautiful," Gloria says with a sigh.
An attendant comes in with fruit cocktail cups, signaling that time is short.
"Anybody come in here, they'd sure wonder what we're doing," Doris says.
Smith passes around sheets with the songs "Polly Wolly Doodle" and "Glow Little Glow Worm" in oversize type, and Marge leads the group with a steady finger.
At the end of the session, Smith thanks each person individually, by name, and tells them they can take a cutout bug back to their room. She hands Marge the glow worm, telling her, "It looks like you. It's so happy."
Marge laughs and laughs. She laughs so hard that, swept up in the moment, she whips her false teeth from her mouth and waves them around joyfully.