Fairy Pirates

Alice escapes the captivity of Alzheimer’s through story. Pirates, the ultimate hostage takers, often lend her a hand. I haven’t seen these pirates myself, but it’s clear they are pirates with a dashing Johnny Depp-ness, or the crimson glow of the young Burt Lancaster. Alice sings with them. They laugh together on the ship or the island. Hints of another Burt Lancaster beach scene seem to linger about her after they let her go, famished but content. I like these pirates.

A few days ago, I was on the phone with a kind young woman from TIAA-CREF straightening out some mysteries Alzheimer’s had introduced into my mother’s retirement accounts. At the end of the transaction, she told me about her grandmother who had been trapped by Alzheimer’s in the year 1973. Alice floats around in time. When the pirates come, she is anchored around 1954, the year she graduated from college and got married at age twenty.

Was it lingering familial recognition that kept Alice from mistaking her three twenty-something year old grandsons for dashing pirates? Peter, their father, did not have the same luck. Once, when I was away, the pirates turned threatening and she made him into her fellow captive: “You get into that bed right now, because if I’m not pregnant by tomorrow morning, they’ll kill us both.”

When Peter told me, it was like someone just hoisted the Jolly Roger up the mast to warn us of new danger on board our mother ship. 

Peter, calm even in captivity, told my mother, ”I’m sorry, Alice. That won’t work. I’m your son-in-law.”   

She shifted course immediately. “Oh no. You’re right. That won’t work.”  Then, a long pause.  “Who’s my daughter?”

“Dana.”

“How old am I?”

“Seventy-six.”

“Seventy-six trombones?”

 Seventy-six trombones led the big parade. Alice sank the pirate float. 

Aliceheimer’s

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Up

Up
Alice often sees my father high in the branches of one of our maple trees. At first I wondered if he was “up a tree,” as in a difficult or embarrassing situation.  Or was it Webster’s sense of the phrase, “to put into a position of extreme disadvantage”?  Or was he like the possum up the gum tree, away from the dogs, breathing hard from the chase, but still kind of stuck? My father, Dave, isn’t about to tell us. Lung cancer treed him, and he died in 2006.

After fifty-two years of tumultuous marriage, Alice and Dave were tightly bonded, as with super glue. They often expressed their love through bickering. Counseling to find more easeful ways to relate didn’t appeal to Alice. Hence, my interpretation of my father’s treed position. With time though, the meaning of Alice’s seeing him up in the tree became clear. It is longing. Longing for him, longing to make amends, and there he is, up in the branches, waiting for her.  

Sometimes when Alice knows that she is seeing something that I can’t, like Dave up a tree, she will say, “Do you remember that time that Dave climbed a tree and we were looking all over for him and then when we were about to give up he called out to us?”  She’s a good storyteller, and like all of us, she uses story to make sense of the world.

Though she was raised and baptized in the Armenian Church, my mother was never religious. She, like my father, who was raised by his communist grandmother, was spiritual but not religious. My siblings and I followed our friends to everything from Schule on Saturdays to Methodist Sunday school, to Quaker meeting. When Alice looks up and sees Dave, her old self would never have called it heaven. But her new self is flexible enough to use the word heaven metaphorically.

Her new self also embraced Hakomi Therapy, a mind body integration method that uses her own body gestures to let her process some of her regrets. With Martha Whitney, a versatile, caring therapist who tracks her clients with the deftness of a spider monkey swinging through the trees, Alice has learned about her own gestures. When she misses Dave, she puts her hand on her breastbone, moves it back and forth, and looks up.

Now, even if Alice is inside and it is night and she can’t see the trees and she asks “Where’s Dave?” we can tell her to place her hand right there and to look up. As her hand moves back and forth, she smiles. She always says, “Ah yes, I see him. There he is.”  

Aliceheimer’s

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Apples are Better

apples are better

My mother, Alice, was never a starving Armenian. Still, she dreams about food, the way a starving person might. Most people with Alzheimer’s lose interest in meals. Instead, hunger consumes her. Her particular conformation of plaques and tangles seems to set up short circuits that re-introduce hunger within an hour of eating. What sticks to her insides is not the memory of her last meal or snack. She has gone from trim and stylish to quite large. Lane Bryant here we come.

My mother’s parents did in fact starve, barely surviving the genocide of 1915, when hundreds of thousands of Armenians were marched into the Mesopotamian desert, without food, to die a slow death.  I used to wonder if starvation in one generation might account for a run of obesity in the next. My trim stylish mother stood out among her fat female cousins, all of them first generation immigrants. In the second generation, I was lucky enough to inherit a healthy Mediterranean diet rich in vegetables, fruits, whole grains, yogurt, and olive oil from my Armenian ancestors, as well as normal attitudes about food from my mother.

Now that my mother is simultaneously starving and fat, I sometimes wonder if her hunger is a distant childhood memory, perhaps one that even spans generations. As soon as she learned to speak English, in kindergarten, little Alice was the one sent to the butcher to ask for free bones for the dog, though no good Armenian would ever have kept a dog in a New York, walk-up, railroad apartment in 1938. Those bones she brought home made for good soup, thick with slices of day old bread. No, she didn’t starve when money was tight. 

My mother’s neurologist keeps imploring us to watch her weight. We’ve watched it, doing our best to ration my starving mother’s food. We’ve kept bowls of fresh fruit and vegetables out on the counter so she could pop little loligner (Armenian for tomatoes) into her mouth like candy. A similar bowl on a table near her bed allowed her to eat and head back to sleep without interrupting my sweet dreams. I was fresh the morning after the night that broccoli grew from her ears. When she told me that she would rather have apple trees with new fruits appearing every time she reached out to pick one, I knew she was on to something.

Aliceheimer’s

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Aliceheimer’s

Aliceheimer’s

“Dana, am I going crazy? You would tell me if I had lost my marbles wouldn’t you?”  I’ve heard these questions many times. Repetition. Anyone who lives with Alzheimer’s knows from repetition. As her rudder, I always supplied my mother, Alice, with the same steady answers. “No. You’re not crazy. You have Alzheimer’s Disease so you can’t remember what just happened.” “Oh. I forgot. What a lousy thing to have.” “Would you like a cup of tea?” “Okhh, I would love a cup of tea.”  This ritual soothed us both.  As an anthropologist, I know from ritual and how it uses repetition to soothe worries, to fill in the unknown, to make things better.

I’ve asked medical students to consider the ways that rituals, repetitive actions with symbolic meaning, heal. What do the white coats they always wear, or the repetitive sequence built into the ritual of the physical exam, say to their patients? Hand washing protects from germs, but it is the white coat that grants permission for those cool clean hands to linger and squeeze the soft vulnerable throats of a sick person clad only in a loose gown. White coats, the disinfectant bite in the air of the exam room, the rustle of the roll of paper on the exam table; these never fail to transform my mother into to a trusting patient. Even in the thick of Alzheimer’s, these clinical rituals have somehow always helped her find her marbles.

Endless repetition of questions alone does not make for a ritual. But add a dose of symbolism, a hero or two, and a ritual is born. Our three grown sons joined my mother, Peter, and me, for dinner only on occasion. At almost every meal she repeated her question: “Where are the boys?” For weeks, Peter gamely fielded the question with all kinds of stories about who they were with, or how they got where they were. But the breakthrough moment, the transformation into ritual, took place when he typed up a little story, just a paragraph, about each son. Below the boys’ bios, he added pithy quotes by some luminary, such as Mozart: “Love, love, love, that is the soul of genius.” When she asked, “Where are the boys?” we gave her the paper. The magic of reading neat typed text, the sheet of paper, a dash of Mozart, the silence while she read, satisfied her as none of our verbal exchanges ever could. “Thank you. This is very helpful. What a good idea to write this up.” Then with the paper beside her, the repetitive questions settled down for the rest of the meal, till it was time for a cup of tea. “Okhh, I would love a cup of tea.”

Aliceheimer’s

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Alice Ungrounded

My father was the one to read Alice in Wonderland out loud to us on the big stuffed chair, my brother and I saddle-bagged on either side of him. But it was my mother, Alice, who took us to the library. Long before I could read, she brought me there each week to borrow a tiny Beatrix Potter book, even though I, like Peter Rabbit, had a tendency to break the rules between these trips.

She still loves books. I’ve watched, boggled, as she reads without the benefit of a short term memory. And yet she does it, daily.  Even as her mind loses ground, trips to the library still bring out her curiosity, her reverence for books, and her best inside voice.

Over the past few years, I have taken her to poetry readings and author talks with mixed results. She fussed in her seat as the brilliant Alastair MacLeod, spoke and then read from one of his stories until she used her worst outside voice to say, “My God! He’s very long winded!” That day, I learned to follow the rule of aisle seats and exiting at first sign of trouble. But other times the stars lined up and she was transported by the words. On those days, she loved standing in line to get her book signed, unaware of the family rule I’d broken, buying the book instead of borrowing it from the library.

On quiet afternoons at our house you could hear my mother reading out loud to herself, her intuitive effort to bring the information in by another channel, to make it stick. Witnessing this led me to revive the family bedtime story, a ritual that improved her sleeping and that helped me find our common ground. We started with Anna Sewall’s Black Beauty. The first night, she checked in about the voice. “Horses can’t write, can they?” She listened with the rapt wide-eyed attention of a child, moaning when any creature large or small was harmed. When Black Beauty struggled to be well behaved, Alice whispered to her stuffed bear, “It’s hard to be good, isn’t it?”

Aliceheimer’s

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Flight

The summer I was fifteen, just as I was about to fly alone to Brazil, I read Erica Jong’s Fear of Flying. Bad idea. I checked in with my mother, Alice, about my mounting trepidations. She said, “Driving is far more dangerous and you get in a car with me every day.” That was enough. Mothers know things. So do teachers. My mother, a biology teacher, possessed a double dose of authority and confidence. She has kept this voice through Alzheimer’s. She is as certain of her hallucinations and the stories she uses to make sense of a fragmented world as she had been of the Krebs cycle, Mendelian genetics, or the Hardy-Weinberg theorem.

A mother and teacher myself, I’ve used this same voice to make her stories and hallucinations safe, normal, something not to be challenged. When she was certain that her own mother, who died in 1954, had just been sitting on the sofa in the living room, talking with her, she would say, “You see her don’t you?” I’d say, “I can’t see her but I’m sure you can. You have special powers. You can see things that we can’t.” For her, that was enough.  As her old powers continue to fade, she uses this voice to keep going. She had been an avid New York Times crossword puzzle person. As even Monday’s puzzle became too hard, she switched to Scrabble. But as specific words increasingly eluded her, this voice continued to help her win. She created new words with ready definitions: mladz (mə-lǎdz′) n. A term of address for a group of young men; pissquilch (pǐs′-skwĕlch) n. A small green-feathered bird, native to South America; drends (drĕndz) n.  The sweepings that don’t make it into the dustpan. Challenge her? Never. I just wish I had photographed some of those boards.

Aliceheimer’s

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Missing Parts

My mother, Alice, was always beautiful, Armenian immigrant beautiful, with thick curly black hair, olive skin, and big dark eyes. But as a girl in New York, she wanted soft golden hair, and everything that went with it. She was scientific about her quest, Lamarckian specifically. When she stirred the yogurt and garlic sauce over the stove with a wooden spoon so it wouldn’t curdle, she pushed her nose up with her other hand, convinced that eventually her nose would grow that way.  She stayed out of the sun after she realized which men whistled at her at Rockaway Beach. Still, when she went through the cafeteria line at Duke University in the mid 1950s, my fair-skinned father overheard the cashier say, “I didn’t think they let them in here.”  She is still beautiful. Her skin is remarkably soft and unwrinkled. Until the end stages, when facial expressions and the ability to move disappear, Alzheimer’s remains invisible. The missing pieces stay hidden.

Hiding has always been her friend. As a child, I didn’t understand my mother’s distorted approach to all things blond. Though we ate yogurt long before it became available in the grocery stores, we spoke no Armenian at home. She married an odar—a foreigner, an American. Our job was to fit in, to leave most everything Armenian behind, to become blond.  Now, when she looks in the mirror , I guess it isn’t just age, or the weight she has gained with Alzheimer’s that drives her to say, “I look awful.”  But other times, she comes down from her room for dinner with necklaces and scarves draped around her shoulders, strands of beads woven through her hair. She feels lovely, like an Armenian princess.

Aliceheimer’s

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None is Hard to Draw

None is hard to draw

When my father was dying of lung cancer, my mother, Alice, seemed to be in denial. In retrospect, she was in Alzheimer’s. She couldn’t take in and process the fact that he was terminal. I was with them in my father’s hospital room, a few days after the surgery that removed the cancerous lobes of his lung, when the oncologist shared the pathology report. With tact and compassion, the doctor said that his pathology report was a death sentence. I heard her. But for my mother, the doctor’s information  just floated away. There was no way to stick this idea—that soon there would be no more Dave—to something else she already knew so that she could hang onto it. It’s kind of like trying to make a drawing of nothing—no frame of reference makes it hard.

I was another story altogether. A hyperactive, accident-prone, wild child, I had always tired my mother out. Young motherhood for her was a time of scarcity: She ran out of time, of energy, of money, of patience. She held on to this frame of reference until years later when I came to visit, to help my father recover (her view) or die gracefully (my view), when it registered that I had changed. She hugged me tight at the end of a visit. I’ve been taller than her since sixth grade. “Dana, you were such a help. I don’t what we’d do without you!” Then she pulled away, looked up at me, shook her head in disbelief and said, “And you used to be so annoying!” I’ve always been a sucker for sweetness.

Aliceheimer’s

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Disappearing Alice

Alice doesn’t live here anymore. In September of 2007, the lawyer for my mother’s New York co-op apartment called me at work to say that her apartment fire had led them to require round-the-clock help in order for her to continue living there. This was the first that I heard of the fire. But it made sense. A few weeks earlier, Peter and I were troubled and perplexed by the state of her home when we drove down from Vermont to visit her. Always immaculate and welcoming before, on this hot August day, the heavy air conditioning units sat on the floor in front of windows shut tight. The apartment was stifling and dirty. We put the units back in and cleaned, but she couldn’t explain. She had no memory of the fire department removing the units in order for the smoke to clear.

We set up round-the-clock care, but she hated it. “They follow me around, like the Gestapo,” she said. A proud, hardworking career woman, she did all the cooking and cleaning for our family of five, without any outside help. Next, we tried a one bedroom apartment in a nearby senior living community. After she kept trying to walk home, they said her only option with them was the lockdown Alzheimer’s Unit. They urged us to find another solution because she was still too well. That’s how she came to live with us.  Alice was disappearing. She lost her own home.

Often, the “internal governor” of people with Alzheimer’s also disappears: They say exactly what’s on their mind. This disappearance let Alice find parts of herself that she had kept hidden, from her children, anyway. She wished out loud that she had gone to medical school instead of becoming a biology teacher. The years of her pushing me in this direction and away from creative work made sense at last. And when she stood in my kitchen admiring the cabinet knobs I had hand-painted and said, “You should quit your job and make art full-time,” her loss was my gain.

Aliceheimer’s.

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Alice

Alice

 

For my mother’s seventy sixth birthday, she wanted spaghetti and meatballs and vanilla cake with chocolate icing. We gave her a small black kitten with white spots. When we answered the birthday song question “how old are you now?” for her, she gave us a new theme song for the year.

“Seventy six trombones? When did that happen?”

Seventy six trombones led the big parade. My mother remembers all the songs from the Music Man and countless others from her youth. The present is more elusive. She doesn’t always remember that she has Alzheimer’s. But sometimes she does. And she always sings.

When she sings this bit from Babes in Arms:

      It seems we stood and talked like this before 
     We looked at each other in the same way then,
     But I can’t remember where or when.
     The clothes you’re wearing are the clothes you wore.
     The smile you are smiling you were smiling then,
     But I can’t remember where or when.

She stops and she smiles and says, “That should be the Alzheimer’s theme song.”

Aliceheimer’s.

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