Through the Looking Glass

A patch of four-leaf clover grew in the field outside my fourth grade classroom. Still years before ninth grade biology, before I understood genetics, I had noticed that four-leaf clovers grew together, spreading their luck to each other, so there would always be one there for me. I went every day after school to find one, when it wasn’t winter. During the winter months, I looked through my classroom window and could see them waiting for me under the glaring snow. I didn’t tell the other kids you could find four-leafers there. I just brought one home every day and gave it to my mother, Alice, hoping she would smile. She
slipped it between the heavy glass top and the wood veneer surface of her dressing table.

Two mirrors always graced this dressing table: a standing, three-panel mirror and a heavy, hand-held one, whose silver back and handle surrounded an oval of beveled glass. I was a little girl, with Alice, in a junk store when she found the smaller one. She could see through the dirt and tarnish to the nymph with the long flowing hair spread across its back. But she didn’t let on as she bargained the shopkeeper down a buck and cut its price in half. In the car she explained silver to me, how it tarnishes when exposed to air, how they paint it onto one side of glass to make mirrors. Sometime long before Alzheimer’s disease brought Alice into my home, the glass top of the dressing table was lost, tossed after it cracked, perhaps, leaving the wood veneer exposed.

Now the table and mirrors are with Alice in memory care. Move-in instructions say things like “label everything,” and “we are not liable for property that gets lost, damaged, or stolen.” Clothes come and go, and so do her hearing-aides. My sister and I had to choose which things should move with her. It’s hardly a choice of the magnitude of the one King Solomon posed to the mothers or the desperate choice of poor Sophie. But still, it’s a balance of well being—hers and ours. If that hand-held mirror stays there with Alice to ground her, we will likely lose the chance to hold it in our hands and feel her after she is
gone, looking at us through its glass.

No doubt, the old Alice would tell me to get the mirror out of there. The new Alice would have a variety of answers depending her response to the person who helped her dress and undress that day, to the person who combed her hair, after her bath, while she sat at her dressing table. So the mirror stays on. We can’t imagine her at her table without it.

Glass once again covers the dressing table’s wood veneer surface, Plexiglas this time. Alice had started peeling the veneer off the table’s naked top. Personal nakedness, on the other hand, poses no problems for Alice. The other day, when I called, I asked her how she was, a reflexive question, born of my own discomfort.

“I’m great!” she said. “I just took a bath and I didn’t have to do any of the work.”

Aliceheimer’s

The Lobster Quadrille

My mother, Alice, practiced dying on a regular basis. “Get a shower curtain or something to put under me, would you?” In the middle of Alzheimer’s disease, she retained the bit of scientific knowledge that our bodies let go when we take that last breath. “I don’t want to make a mess.”

Rehearsal usually happened around sunset. I would sit with her, my dead father and her parents hovering in the air around us. Alice took tiny steps toward them, then back to me—our own Lobster Quadrille. She was truly in between, liminal, as in an
anthropological rite of passage, between two social states, transcending two
worlds, though physiologically she had no signs that biological death was nigh.

Will you, won’t you, will you, won’t you, will you join the dance?

In the middle of Alzheimer’s disease, Alice knew that we needed to practice because death and dying remain relatively hidden in our culture. Our medical system equates death with treatment failure. Medical personnel hand off the situation to another kind of expert, religious perhaps, or secular, the funeral home director. Alice knew death was coming, so we needed to rehearse.

In our culture, where death is taboo, and aging is not celebrated, a person with Alzheimer’s experiences a social death long before his or her heart stops beating. Somehow, for the rest of us, they are not as fully human as they once were when they no longer recognize their own families, can no longer speak. The rules for interacting with them and caring for them shift. In the middle of Alzheimer’s, Alice somehow knew this death was already happening, so we needed to rehearse.

As a good member of my culture, I knew that “recognition” was the socially legitimate threshold for changing the rules of care. When Depends™ could not solve the problems of the body letting go, Peter and I came to the end of being able to continue with Alice in our home. The transition was OK—we had rehearsed.

Would not, could not, would not, could not, could not join the dance.

A few nights before Alice moved, she gave us a story to explain the transition to others: I had just tucked her into bed and had gone down the hall to my room when I heard her calling loudly. As I ran back to her room, I could make out her words.

“Lady, lady, lady!”

I opened the door. “What’s up, Na?”

“I just wanted to know your name.”

“Dana.”

“Pretty name.”

“Thanks. You gave it to me.”

“And if I just call, you’ll come?”

“If might not be me, but if you call, I promise you, someone nice will come.”

“That’s good. Thank you. I’ll sleep well knowing that.”

Will you, won’t you, will you, won’t you, won’t you join the dance?

Aliceheimer’s

Falling Slowly

Remember Dave? He was “Up” a tree back in March. Alice still sees him when she looks up. Right after Dave died in August of 2006, Alice explained her memory loss to me: “It’s like a curtain dropped and I can’t remember anything after that first year with Dave.” Pre-diagnosis, though with plenty of signs, I had hoped that mourning him had her stuck in 1954, the year they married. Looking back, it is clear that by then Alice had been falling slowly down the rabbit hole for several years. Dave had been worried about her memory, but when he was alive, she was grounded and she functioned. That he took over many of her tasks seemed a natural part of this kind man’s retirement.

Alice and Dave met in Chemistry class at Albany State Teacher’s College. She had lab early in the week.  He had lab later. She worked in the cafeteria so he would come through the cafeteria line and check in about the lab. “I had a very pretty roommate, Betty, she was blond, you know. All the guys were after her so I was used to them getting to know me to get to her.” Alice ranked according to color. Dave did not.

At the ball game with Betty and the gang, Alice and Dave spent the entire game talking about Thomas Malthus’ Essay on the Principles of Population; in a nutshell, Malthus’ position was that unchecked, population growth is exponential while the growth of the food supply is arithmetical, dooming populations to outstrip their resources. In sum,  Alice realized he might be interested in her. This tableau of my early beginnings always makes me think of Malthus as a kind of “straight man” to Charles Darwin and Alfred Russel Wallace, who realized that evolutionary biology is all about sex. Alice and Dave’s first, serious conversation at the ball park eventually brought them  to home base. 

Alice became a biology teacher and the axioms of biology pervaded our home. When I was little, sometimes she would pat my head and tell me I had “hybrid vigor.” We all learned basic genetics on account of color blindness in the family. My father, like his maternal grandfather who raised him, my brother, and two of my sons, had this X-linked gene—a small mutation that keeps a person from being able to distinguish reds from greens but lets a person make close distinctions among all the shades of neutral. Dave loved the dappled light, the shimmering neutrals, of the forest. Now after many tumultuous years, Alice sees Dave, once again, in that light. She is again falling slowly, into love.

Aliceheimer’s

 

 

 

Because You Are My Mother

“Dana, why are you so good to me?”  

I had just finished helping Alice get dressed. Picking out clothes to wear and getting them on was long since too hard. Now I stood behind her brushing her hair as she sat at her dressing table.  Our eyes met in the center of the three-part mirror that had stood like a folded  screen on her dressing table for as long as I could remember.

“Because you are my mother.”

Big pregnant pause. “I’m your mother?”

And another. Alice turned to face me. “Who’s your daddy?”

“You were married to Dave. You had three children. Mark is the oldest, then me, Suzy is the youngest.”

“Ah, yes. I remember.” Alice turned back and I kept brushing, watching her through the mirror. She looked up and found my eyes in the reflection. “I wasn’t very good to you. I’m sorry.”

Unfinished business. That’s one of the reasons she was here living with us. But I never imagined I would hear these words stated so simply.

“Thanks.” 

“So you forgive me?”

“Of course.” On an intellectual level, I had forgiven her years before. 

“How come?

“Because you did the best you could.”  I knew that if I wanted it, Alzheimer’s would let us have this conversation every single day.  

But forgiveness is also action, action that lets me re-do the past. I wanted to stand at this same dressing table and brush her hair without yanking, without getting annoyed at her knots and chopping all her hair off. I wanted to listen to her as she spoke about her day. I wanted to guide her through uncharted territory.  I wanted to face sickness of the mental sort straight on instead of sweeping it under the rug. The rhythm of the brush soothed us both.  

When I set the brush down on the dressing table, next to a bowl overflowing with the strands of beads that Alice loved to wear,  she turned around to face me again and said, “Running a hotel must be very hard.”

Aliceheimer’s

Umbillicus

I was never close to my mother, not counting those first nine months and the six months that followed when she breastfed me unlike most mothers in the scientific 1960s.

“We’re mammals! Of course I breastfed you,” she had said when my first son was born.

And there are all those fine meals and a clean, enticing home filled with unusual things: two large, striking, oil paintings by her friend Gaylord Flory; a hand knotted rug from Libya; a carved wooden chest from Brazil; and a backyard with a vegetable garden surrounded by fruit trees.  But no, we were never close, until Alzheimer’s.  

It wasn’t Billy Collins’s “worn truth that you can never repay your mother” that led me to have her move in with us when the lock down Alzheimer’s unit was her only other option, though we read his poem, ”The Lanyard,” together many times. It was our unfinished business of finding a good “close.”

When I was little, frugal Alice would let me nibble off the remaining bits of red from around the excised stem of a tomato if she was cutting one up for a salad.  For her, I always kept a bowl full of ripe red tomatoes out on the counter for the taking. Competitive? You tell me.

“Can I have a toe-Mah-toe?” Alice used her My Fair Lady voice and held her pinky out when she asked for one.

“Help yourself.”

“My mother wouldn’t let us do that.”

“Mine didn’t either.”

“Okhh, That’s hard.”   Alice gives the best empathy.

“I kept a salt shaker hidden in my tree fort and would sneak tomatoes from the garden and eat them up there in the fort.”

“Very clever. I wish I had thought of that.”

“Thanks. But you didn’t have a tree fort or a vegetable garden when you were little.”

“No. That’s right.” Alice took another bite. ”Where did I live?”

“You lived in a walk up, railroad apartment on 56^th Street back when that was still a bad neighborhood.”

“233 East 56^th Street.” Six stories, multiple apartments on each floor, with a shared toilet in the hall, her building is long gone, replaced with nondescript offices.

“And there was slaughterhouse and meat processing plant down where the United Nations is now.” I learned this fact when I was doing research for a novel.

“The smell was horrible.”

“I can imagine.”

But the best facts I learned straight from her.

“Sometimes my mother stewed a lamb’s head for supper.  I wouldn’t touch it. I’d go to bed hungry. But my sister, she loved it.” Alice reached for another tomato. “You know, you must have been a cute little kid. I wish I had known you then.”

“You too.”

 Aliceheimer’s

Light, Years, Later

“This meat is delicious,” Alice said as she scarfed down another big bite of fresh grilled steak. Alzheimer’s brought out her carnivorous streak. Peter and I accommodated. “I don’t dare ask where you got it.” Alice glanced over at the dog.

“It’s from the country store.” Our local store carries meat from local farmers.  

“But where did they get it from?” She looked at the dog again avoiding eye contact with me and Peter. “Isn’t there rationing?”

“Oh no! No rationing. Don’t worry.” She always gives us clues about her whereabouts. “Are you in World War II?” She nodded.

Hallucinations? Visions? What to call them and what they lead to on the beatification-incarceration spectrum all depends upon frame of reference. Culture, the bread and butter of anthropologists, lays out the rules. Some arctic cultures require healer trainees to have visions, perhaps because they’ll ensure that the healer will understand the sense of displacement that goes with being sick. Sticking with science, biomedicine defines visions as symptoms to be eradicated. The Mayo Clinic website tells patients that Lewy Bodies “abnormal round structures … in … regions of your brain involved in thinking and movement…” can cause the visual hallucinations that some Alzheimer’s patients experience.

My scientific mother, Alice, can grasp the histology of these abnormal round structures. Despite the fact that biomedicine has no way to eliminate these Lewy Bodies or the plaques and tangles of Alzheimer’s, she still believes in the power of science to make things better. Peter and I had other bodies on our minds. We needed more than biomedicine could offer to make peace with the Japanese soldiers that sometimes emerged from the memory of a 1945 newsreel to surround our house at sunset.

Instead of insisting that the soldiers weren’t there, we used another branch of science to interpret Alice’s visions: Space time travel, her special power, accommodated simultaneous realities. It’s relative—I’m sure Einstein would have approved.

I passed her a second, smaller, piece of steak. “I’m here in 2010 where there’s no rationing. You can just go buy meat at the store.”

“So you just got it from the store?” She savored the next bite. Instead of looking at the dog, she blotted her lips with a napkin and studied Peter. “So where’s he?”

Aliceheimer’s

Sundowning

In 1973, my parents moved up in life. Fifty-five vertical steps from the street to the front door gave us excellent cardiovascular health along with a spectacular view of the Hudson River and the Palisades cliffs beyond. From her bedroom, in the front of the house, my mother, Alice, loved to watch the Palisades glow with dawn light. She treasured this quiet time alone before the rest of us woke, before a day in the classroom, before errands on her way home. At the other end of the day, as the sun dropped behind the cliffs, the golden ginger light wafting into the living room cast a powerful spell on her that often pulled her away from the kitchen. Dinner could wait. The first time that a family friend visited and saw the view during one of these magical sunset moments he said, “Alice, you’ve arrived.”

Now sunsets sometimes bring a different kind of magic. Black magic. Stories come alive. Newsreels from her childhood come back through the ether. Phantoms appear. The Mayo Clinic defines sundown syndrome as “a state of confusion at the end of the day and into the night.” While its cause is unknown, the shape of the phantoms can give clues about how to make sunsets clear and safe again.

I hovered that time of day, pulling Alice into the kitchen to do something familiar as the light, and reality, shifted. She was slicing green peppers into the tiniest cubes, when she said, “It’s good you came along when you did. I would have drowned. Papa would have been so mad at me. I promised not to go there.” That afternoon she had read Marion Dane Bauer’s, On My Honor, the story of a boy consumed with guilt after his best friend drowns when the two of them sneak off to swim in a forbidden river. I could tell her, “Papa would forgive you.”

When the witches came, I asked her what they looked like. Sure enough they were of the Wicked Witch of the West variety. In my best Glinda voice, I told Alice that I spoke with the bad witches and explained that they weren’t allowed at our house.

“They listen to you?”

“Sure.”

“I’m glad I’m with one of the good witches.” I was honored.

We never shifted dinner time to five o’clock, as Alzheimer’s residences do in order to ease the pain of sundowning. To keep our lives normal, we waited for Peter to come home. Instead, we worked in the kitchen, mindful of the spirits who were there with us. Once they and she had settled, we could step outside together to see the evening colors spread across the Vermont sky.

Aliceheimer’s

 

 

Sublimierung und Selbstverachtung

“Dana, can you come here?” Alice called from the sofa, her voice high and panicked, as though a bat might be circling overhead. The blanket that I had tucked loosely around her toes at the start of her nap was now pulled taut. She gripped it from underneath. Only her eyes and the top of her head peeked out. “I think I grew hooves. Can you check?”

She let me peel back the blanket to see. “No hooves.”

“You sure?”

I touched and counted each of her five fingers and toes for good measure. She started to relax.

“And my head? Is it OK? There’s nothing growing there?”

“Just your hair.” I stroked her head to show that it was smooth, that I wasn’t working around hard pointed horns.

 “Thank you. That’s such a relief.”  

It was a moment more intimate than the daily help in the bathroom.  She had revealed her deepest fear—that she was no good. It was an intimacy born of Alzheimer’s, a sickness that often makes emotions tangible. Its hallucinations, assertions, and questions are like a language.

“Are you feeling bad about yourself?” I asked, my hand still resting on her hornless head.  

She swallowed hard. “I wasn’t very nice. I wish I had done better.”  

“You did all right.”  

“How do you know?” Like a student of medicine, she wanted an algorithm, a system, proof.  

“Did you know that to die in peace, everyone needs four basic things?” 

“Like the food groups?” She sat up taller. “What are they?”

“To be loved.” I rattled off a list of people, leaving off the hot spots.  Each name brought a nod and a fresh dreamy smile.

“To love others.” I repeated the list and her nods were emphatic.  

“To forgive others.”

She paused a moment, then said, “You know I would never have gone to college if my sister didn’t pave the way.”  

“And to forgive yourself.”

She took a deep breath in, then let it out. “Forgiving yourself is the hardest.”

“I know… But you were younger then. Maybe you could cut your younger self a break?”

“Where’d you learn this stuff?”

“Not from you.”

She laughed. “I know that. But it’s still good.”

Aliceheimer’s

It Takes a Village (with a Dog)

My mother, Alice, and her sister sublimated their sibling rivalry through their respective preferences for cats and dogs. I grew up in the cat family, but when I moved my own family to Vermont, I replaced the aloof, feral beauty of cats for the loyalty and unconditional love of dogs. When Alzheimer’s led Alice to live with a large yellow dog (we are a package deal), she was, in a sense, living with the enemy. Herbie courted and eventually charmed Alice. Soon she was saying, “He’s nothing like my sister’s dogs.”

It began as symbiosis. When Alice preferred ice cream to lunch, Herbie obliged and took care of the first course. He helped with the ghosts or robbers she imagined lurking behind the sofa or the trees. “I feel safe when I’m with him. He’ll protect me.” But most of all he gave her dignity. Instead of curbing or preventing the “wandering” of Alzheimer’s, as the Mayo Clinic advises, we could let her wander with Herbie by her side. The two of them could go out for short walks down our long driveway and then up the dirt road. Alice craved this independence. Herbie was the visual cue that kept her grounded. He always knew the way home. In the summer, Alice always returned with a small bouquet of wild flowers. Of course this kind of freedom is one of the luxuries afforded by life in the country.

Once, Alice wandered all the way down to the paved road; Herbie, the MedicAlert bracelet, and good neighbors saved the day. A Good Samaritan driving past saw she was a bit disoriented and stopped. When Alice got in the car, Herbie tore back home barking in alarm. Next door, Dan and Betty, saw them go down the hill and heard Herbie come back alone. A call to the police quickly revealed that the driver had taken her a couple of miles down the road to the Jolley’s gas station and store where Alice sat happily eating a sandwich the kind-hearted manager had given her. Even with this near miss in the fall of 2008, we still let her walk with Herbie. Taking on this bit of anxiety let Alice keep her dignity. Herbie made it safe.

As Alzheimer’s progressed, it became harder for Alice to take long walks, but she still shared certain foods with Herbie. He joined her on short walks down the driveway, coming to retrieve me if she took the wrong path from the driveway to the front door. In return, Alice would tell us, “He’s almost enough to make a dog lover out of me.” For Herbie, that’s more than enough.

Aliceheimer’s

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