Presence

First lesson from the theater: Be Here Now. It is not only the title of a spiritual biography that was a bestseller in the 1970s, it is the first lesson of theatrical presence. As Thornton Wilder famously wrote, “In the theater it is always Now.”

The actor creates the sense that what we see on the stage is happening before our eyes for the first time, even though she operates with a double consciousness: she exudes spontaneity, yet hits all the markers of the stage blocking at every performance, finds the correct pool of light to stand in, cheats downstage enough so that she isn't saying her lines into the back wall. As a caretaker I learned to exercise this double consciousness of the actor's craft, being “here” and “now,” in both these senses.

The “Now” of Alzheimer's is not exactly the same as the now of Now, because in the Alzheimer's Now there is always the extra dimension of danger. Imagine that while carrying on a cheerful, animated, conversation with you, I am also, like the Secret Service, monitoring all doors and windows as potential hazards. I am also watching your every move to make sure you are safe:

“Oops. Did you just pop something inedible into your mouth?”

“Oops, are you wearing several shirts? Let's take them off, then, shall we?” All but the first one.

“I should have supervised you when you were getting dressed,” I tell myself.

I keep in mind that you are easily agitated. I want to avoid agitation because agitation is hard to stop once it is mobilized, and we need to avoid taking the agitation medication that we keep on hand because it has side effects.

Once, for instance, by being completely present, I saved my mother from being murdered by Betty, the hairdresser of her assisted living home.

“Elinor, save me!” Mother screams, “She's trying to kill me!’” It seems that Betty was advancing on Mother with an apron and a bottle of shampoo.

You might think that the best way to climb down from such situations is to be reasonable and point out that Betty is not an axe murderer, she just wants to shampoo your hair. But, as in theater, the reality principle is not necessarily the dramatic principle. This leads me to another Alzheimer's care lesson taught so well by the theater.

Improvisation

Playfulness and even pretense became my essential keys to Alzheimer's care. One day, I was taking Lil to a matinee at the Kennedy Center. I knew she wouldn't really be able to follow the plot of J.M. Synge's, The Playboy of the Western World, but Lil loved going out, seeing people and being seen, and the theater has always been a good place for that. In the 18th century some thought that was its only function. So that morning I help Lil dress, make her lunch, give her her pills, and then it is time to leave for the theater. “Come on, Mother dear, we have to go.” I am stationed in the front hall by the door. Mother is stuck in place in the bedroom.

“I have to brush my hair,” she says, settling in front of the mirror, brush in hand.

“But we have to leave now!” I call back. “I know,” she warbles, “I'm brushing my hair.” We are caught in a loop.

I get an idea. Standing at the front door, I call back into the bedroom where Lil is brushing, and brushing. I call out — God, forgive me for sinning — I call out, “Mother, come look! There's a giraffe in the hallway!” Lil rushes out to see, I grab the keys, her purse, her jacket. And we're off!

The giraffe, I blush to admit, went thataway.

Here I need to put a little red dot on that giraffe, a reminder to come back to what we can now call the Giraffe in the Hallway Problem, standing in for the central ethical issue facing the dementia caregiver.

Lil as Gertrude Stein

Even more important than being an artist myself, in the sense of inventing playful scenarios and engaging in improvisations, or in the sense of achieving theatrical presence by living in the “Now,” even more important was the art I attributed to my mother. I could have been appalled, I suppose, as Lil's language cracked up. First paragraphs, then sentences, then words themselves, lost direction in the middle, turned into strange beasts with ears of cats and tails of dogs. But in her non sequiturs and repetitions, I'm hearing the very artists I studied in graduate school — Gertrude Stein! Samuel Beckett! Wait a minute, I ask myself: if Beckett can have his characters ask, and ask again: What are we doing here? And answer and answer again: We're waiting for Godot. If Gertrude Stein can repeat and repeat. If they can do that and we think they are creating a new “aesthetic,” why do I hear only decline and loss when it comes to Mother?

I become so charmed by some of our conversations that I begin to carry a little micro cassette recorder with me on my frequent visits to Washington. Lil is a zany language poet! She invents words, makes rhymes. She creates Characters. She speaks knowingly of the Group, the Stalins, the Serbs from the Upper Lakes, the Dogs that Crossed the Federal Line. These fantastical creatures — like the guests at the Mad Hatter's tea party — continue to emerge even after she bottoms out on the Mini-Mental Examination.²

I confess I have it in for the Mini-Mental.

In the entire ten years of Alzheimer's, I saw my mother humiliated three times by caretaking institutions, their practices, or their practitioners, and the Mini-Mental was one of them. A nurse came to visit mother from a Washington nursing home before mother was admitted. She was charged with administering the Mini-Mental as a kind of entrance exam for the Special Care Unit of the Washington Home. If you did too well on the test, you flunked.

“Lillian dear,” says nurse Helen James, “I'm going to ask you a few questions. Just think for a second and answer what comes to mind, okay?”

Always game for a game Lil shoots back a lusty “Okay!”

“Lillian, what year is it?”

“Three…two…” Lil stammers.

“And what season?”

Lil: “Flook?”

Lil senses this is not going well. Too far gone to answer the questions she is not too far gone to feel the sting of failure.

“What country are we in?”

Mother suddenly blossoms with an ancient memory: “January, February, March, April! “How'm I doing?” she beams.

You would think any sequential memory would be greeted as a miracle, but Nurse James moves impassively to the end, “You're doing fine.”

“Lillian, can you fold this paper in half?” she asks. She hands Lil a blank piece of writing paper.

Lil holds it absently, concepts like “fold” and “half” utterly beyond her. She fights back. “I'm not going to throw myself into the stank!” In dementese this translates roughly as “I refuse to answer on grounds of self-incrimination.” She took the Fifth.

At this time, Lil could still summon a snatch of French and German, still play the rolling arpeggios that were her “signature” on the piano, still muster charming, Lewis Carroll-like sentences, still dance, as the nursing home activities director was later generous enough to tell me, “like Isadora Duncan.” Yet both the accepted diagnostic tools and the conventional design of institutional care-giving were conceived much more around what an Alzheimer's patient could not do, than what she could.

By contrast, a few years ago in Ridgefield, Connecticut, I got a glimpse of a new, let us say, theater-inspired, model of nursing home life for dementia patients, a model based on what they could still do. I visited an assisted living facility whose program director for the dementia residents had hit upon the idea of installing what she called “life stations” around the periphery of her unit's public space. She had been trained in the methods of Validation Therapy, but what I saw went beyond the codified empathy of Validation into the realm of theater and performance.³ The “life stations” were little environmental theater sets, one might say, at which residents could repeat in miniature the motions of familiar daily activities. At one spot there was a wood-working bench for a male resident who had been a cabinet maker, at another a table with a basket of fresh laundry waiting to be folded, at another a mock country store with boxes of cereal. At each of these stations, a resident could re-enact familiar actions from his or her earlier life.

“You're doing theater!” I exclaimed to the director. “I suppose you could call it theater,” she agreed. These “life stations” recalled, to me at least, the station dramas in the town squares of 14th and 15th century Europe. In this small-town-of-yesteryear station drama, the residents collaborated as actors and spectators, the staff as directors and stage managers. Staff members, I was told, actually study written scenarios inserted in the files of the residents. “We think of it as Validation extended into the environment,” the director explained modestly.

I almost wept when I saw these “life stations.” I thought: Lil would have had such a good time “going to the office.” In fact, one day she did just that in the nursing home dementia program where she spent her last 18 months. Lil invaded the recreation director's work cubicle one afternoon, laid out the papers stacked neatly on the desk and thumped each one with an imaginary rubber stamp crying out, “Bill of Lading! Bill of Lading!,” the legend that used to appear on her export orders.

The Life Stations were only one type of dementia theatrical activity that I've been introduced to. Another program director told me she trains her staff from manuals on Creative Dramatics that she takes off the internet. Another well-known project is “TimeSlips,” a method for training institutional caregivers in working with Alzheimer's patients through improvisation and storytelling.⁴ The program was developed by MacArthur fellow Anne Basting, who began her career taking a Ph.D. in playwriting at the University of Minnesota. Perhaps a third wave of dementia care philosophy is emerging. Beyond restraint and correction, beyond compassion and understanding, to bodily enactment and the imagination. From correction, to compassion, to imagination. And specifically to the embodied imagination of theater.

The Alzheimer's Wars

The chair of the Theater Department at Emory University, where I began my teaching career, used to say that theater represented a Third Way of knowing. There was Literacy, Numeracy, and then there was a somatic/mimetic way of encountering and reproducing the world: call it theater. Call it embodiment. It would be good to inject this perspective into our conceptions of dementia care without making inflated spiritual claims for the “power of art.”

Unfortunately there is a kind of Alzheimer's War going on between the medicalists and the self-proclaimed humanists. The former assert that a cure is around the corner, and the latter assert that “art makes everything better.” The latter even fall into internal competition to advance the claims of music, or visual art, or theater, each of which is believed to recognize, build and advance “personhood.” Thus you have the Museum of Modern Art holding special days for ambulatory Alzheimer's groups, who settle down in front of the famous Mondrian painting “Broadway Boogie Woogie,” and grope for answers to the Curator's questions about artistic form. MOMA even held an Alzheimer's “Summit” at the height of this effort, in which humanists and medicalists squared off against each other.

Once, a few years after my book, Making an Exit, came out, I was invited to speak to the luncheon circle on medicine and humanism at the Yale medical school. A nurse who regularly attended these monthly events, addressed me, the speaker of the day, in the question period.

“You do know,” she said, “don't you? That at the end, your mother wasn't a person any more. You do know that, don't you?”

Silence in the room. “No,” I replied, “I don't know that.”

In another encounter with a medical professional, Lil was rushed to a Washington hospital with what turned out to be sepsis. I was in New York, my devoted uncle was in Colorado, and Lil's attendant that night was not allowed into the ambulance. Mother became agitated, incoherent, couldn't answer questions.

When I got the doctor on the phone the next day, he was angry. “By chance we found the right antibiotic,” he scolded me. “But you have no direction in her chart, ‘Do not medicate.’ If you had done that, you'd be out of this by now. Do you really want to keep your mother alive like this?”

So the sides seemed to be drawn. On one side, realism and materialism; this side knows what a “person” is. On the other, play, improv, and — I admit it — the risk of a kind of foolishness. This is one way of describing the central divide in dementia care, a divide that can even pull families apart. Several years ago I was being interviewed about my book by a public radio host from Minnesota, who asked to continue the conversation off the air when we were done.

His father suffered from Alzheimer's he told me, and he and his brother had differing views on how they should conduct themselves with him. Was it ethical, the host wanted to know, to “fool” someone with dementia? He himself had been playful one day in response to one of his father's statements, the truth of which was more imaginative than literal, and his brother had witnessed the exchange. Later, he told me, his brother laced into him for demeaning their father, that is, for not according him the dignity owed to an adult. The host wanted to know: What did I think? I told him about the Giraffe in the Hallway.

The Giraffe in the Hallway Problem

Truth is, I didn't feel really comfortable about the Giraffe in the Hallway. Not to mention that little tape recorder with which I was in effect turning mother into a performer without her consent. Totally unethical! Except that she enjoyed it. Is there a way to settle this ethical question, now or ever?

The traditional distrust of the inventive, sometimes anarchic, spirit of theater, the fear of undermining grounded reality with imagination, goes back to Plato. The Platonic suspicion of the fakery of theater and the Aristotelian objection that theater served a moral function and a public good, almost the first thing one learns in a course on theater history, was helpful in resolving the conflict that my Minneapolis host was suffering. But is it completely obvious how to draw a firm line between realistic knowing and theatrical knowing, my Emory chair's Third Way of Knowing? It is on just this point that the theater taught me its most mysterious dementia lesson.

One day, in the seventh year of what in my memoir I call the Emergency, the Chronic Emergency, Mother gave me a sudden glimpse into the experience of living with Alzheimer's. We were strolling down this same hallway where I had sighted the giraffe who escaped. Suddenly she asked me, “Is this a game? A play? or reality?” Here was a question that had engaged philosophers, theologians, and artists, beginning with the pre-Socratics and going up to Pirandello and beyond. Is life a dream? Is all the world a stage? I was stunned that my mother, impaired as she was, could ask such a question, made even more stunning by the banality of the surroundings in which it arose.

What did it mean, I wanted to know, I still want to know, about the disease, that my mother, years into dementia, could somehow disentangle and propose as discrete perspectives, those three layers of experience?

If it was a game, then it had a predictable, even mechanical nature, it had rules. One might be able to grasp these rules and reorder disordered experience.

Its being a play, on the other hand, would explain the provisional “as if” feeling she must have had. If it was a play, she could abandon herself to the fiction of the moment believing there was firm ground to return to, temporarily out of sight.

And if it was “reality?” I understood then that for my mother, the so-called reality of everyday life was painfully unmasked by dementia. She was actually living in and through her own body, what I was merely philosophically attracted to as a theatrical trope in the profound theater thinkers — in Shakespeare in The Tempest, in Calderon in Life is a Dream, in Pirandello in Six Characters in Search of an Author, and in Beckett, in the mobius strip world of Endgame. In these plays, so for Lil, it seemed, the surface of existence had splintered into irreconcilable, illusory perspectives. Out of touch with what we call “reality,” with this question Lil nonetheless became a kind of realist, seeing through the illusion of life's coherence. The question, “Is this a Game, a Play, or Reality?” seemed to be a sudden depth charge from what is so often thought of as the lost subjectivity of Alzheimer's.

I use the word “subjectivity” advisedly here. From my decade of experience in dementia care, and from what I've learned in the world of Age Studies that my experience ushered me into, I have come to understand that “Subjecthood,” or even better, “Person-hood,” is at the core of all ethical concerns in patient care. It seems to me the flip side of the abortion crisis.

After I published the book I got a message on my voicemail from an old acquaintance I hadn't seen in years. She was now a well-known family therapist at the Ackerman Institute. “I am so glad you wrote about the hidden plusses of Alzheimer's!” she told me. “I'm telling all my clients, Alzheimer's is not a death sentence to relationship.” And this leads to my final lesson from the theater.

A Lesson from Ibsen

You don't have to study theater to know that you should never give up on human growth, but theater is a great teacher of it. I used to teach a seminar at the Yale School of Drama on the great Norwegian playwright Henrik Ibsen. I once heard his legendary American translator, the late Rolf Fjelde, say, with tears in his eyes, “Ibsen never gives up on human growth.” He was thinking of the last moments of last acts in many Ibsen plays when something quite unexpected happens. Ellida, from The Lady from the Sea, embraces her marriage just as we're sure she'll bolt for freedom, and Nora, of The Doll House, walks out of hers, and slams the door.

I am thinking now of my mother's “last act,” the one she survived to experience because that irritated doctor “by chance” found the right antibiotic. Though there are often good reasons for such instructions in a chart — I am not rearguing the Terri Schiavo case here — I am always aware that if Lil's chart had held instructions not to medicate in case of infection, she and I would not have shared the most important conversation we ever had; we would not have played pattycake together the following Mother's Day; and she would have missed her last grand love affair.

Six months or so before she died, I visited her Washington nursing home and met a lovely woman whose husband had just been admitted to the floor, Mrs. Blue. “My husband has fallen in love with your mother,” she says. “I'm so glad he's found her. Anything that makes him happy.”

Astonished both by this new development and her generosity of spirit, I glance across the room, and there are the love birds, holding hands, eyes blissfully closed. I am introduced to Mr. Blue. “You have a very, very good-looking mother,” he tells me.

A nurse reports that in an affectionate confusion, Mother and Mr. Blue have somehow exchanged dentures.

This was not my only evidence of the flowering of late love in my mother's life. A woman not given to sentimentality, disappointed in affairs of the heart for an entire lifetime, a realist and a skeptic about love, Lil had changed, and I with and in relation to her. “Love” became her favorite word, “I love you” her familiar declaration. The very last time I saw her, shortly before she died, she didn't remember my name but whooped with joy on seeing me and stammered: “Are you — are you the one I love?”

After a decade or more of increasing dementia, Lil died suddenly of a heart attack.

Perhaps she was spared many more years of inca-pacity, but in the long span of her survival, Person-hood survived her impairment.

As for the giraffe: sometimes you just need a zoo.