A fiddler, a pianist and a mellow man on an acoustic guitar burst into a fast-paced number. I beam at my partner, and we begin to entwine into a crowd of vibrant people. There’s a familiar hand on my back as I am led into a swing, pivoting around one foot, my skirt sweeping across my ankles, then with one arm raised, finishing, in an enthused spin. In my own intensifying excitement, I look away for a moment, and turn back to a stranger. My eyes lift to see my original partner whisked away down the line, not far off, so my worries ease.
father grew up summering at a cottage in Nelson, NH, where, he tells me, his fondest memories were made. He recollects all the trouble he got in with his twin brother and best friends Harvey and Barry. He mentions the games they used to come up with, the neighborhood dog, riding tractors, jumping in the lake, but what interested him most was contra-dancing.
As a young girl, I didn’t have a difficult time imagining his earliest days because my parents brought me to the cottage during my summers to make my own experiences. Every Friday night, we’d go to the old town hall, equipped with loose clothing and free food. My dad and Harvey would play a song or two on their fiddles with the band, and then join us as we’d dance up and down the hall well into the night.
My father is now 72, and I, 18, and despite his fight with Alzheimer’s coupled with severe anxiety, I’m beyond happy that I grew up with him unaffected by the grasp of disease.
My new partner smiles politely, and we begin our routine—allemande left, gypsy, balance and swing, and for the finish, a spin for the woman. I close my eyes when I’m spun, feeling my fingertips flutter against the palm of my gentleman, and the sleek-polished wood floor against my bare feet.
I would close my eyes all the time as a child, thinking, as most do, I would be untouched by whatever I hid from: monsters, evil, stray bears that wandered into my house. When I matured, I expected the same in my father’s situation, and spent a good amount of time denying what was happening.
Growing up, I watched him walk off, lose track of names, people, places, and have his license taken away. He became scared more easily, insisted on routines, and panicked when we went to family gatherings. His irrationality irritated me, which unfortunately led to fights I wish I could take back. I know now, but at the time, I had begun to believe this was normal in old age.
I am learning acceptance.
I pass a few faces, all foreign to me, but I become more familiar with the succession. Faces begin to blur, and I feel sweat on my temple. I glance expectantly around for my original partner, my eyes swimming in and out of colorful fabrics. He can’t be far off. I turn to gypsy the man before me, and suddenly words, rules, course through my mind from my father: “You could have no clue what you’re doing, but make sure you look your partner in the eye when you dance.”
There was a moment when he couldn’t speak, words flickered out of his range, and his hands trembled. He started to sob violently, which is a sight difficult to see anyone succumb to. I saw in his eyes complete vulnerability as if he returned to my reality, for a moment, lost and stricken with panic. As I hugged him, he continued for a few seconds, and then stopped. Sniffing loudly, he let me go, and as I stepped back, I saw him staring off in another direction. I followed his line of vision and saw the weather channel flicker on, and a man in a suit take his attention away.
I am learning compassion.
My new partner is passionate. His grasp around my waist is solid, comforting, and when we swing, we swing fast. I lean backward slightly, faster and faster we twirl. I laugh, louder than I expect. I laugh because I know I’m losing control, and my feet, they can’t keep up. As I misstep and we stumble awkwardly to a halt, I apologize, but he laughs with me until we have to part. Onto the next, a face among bobbing heads.
Every night, when we all lived together in our comfy, old-fashioned house, my father would get up seven to 10 times to wander his room, the hallway, or mutter his anxieties to whoever it was he believed was before him. He was sleepy, uncertain and not in control of his bodily functions, so when he had accidents he became upset and apologized persistently, but we laughed, made a joke, eased his tension and assured him that we all make mistakes.
I am learning patience, humor, and the value of sleep.
The dance is not over; we have just reached the end of the row where we wait a turn, to go back down the other way. My vision is blurring, my world is swimming, and I’m exhausted. It is hypnotic to watch, the fleeting exchanges, swinging, spinning, turning and twisting. I see an elderly couple, swaying gently as two college kids sweep past, bouncing and eager. I give up trying to find my original partner in the crowd.
My mother is a strong-minded woman, caregiver and wife. Her perseverance to create an ever better life for my father is something I hold with great respect. She is lonely, tired, but mostly lonely. He would speak anxiously, mixing words and sounds, no longer at the level of intellect they once shared. “Like a child,” she tells me. It’s difficult to watch her sacrifice so much of herself, but at the same time, it makes me believe in the limitlessness of devotion between two people.
I am learning appreciation and respect.
My eyes won’t focus. I try to keep them on something still, someone in front of me, so I can keep myself from becoming unsteady. Flashes of yellows and purples fly past on a mostly colorless surrounding. I can’t see what is happening around me.
He recently fell in our living room. We left for a minute and came back to him shocked and on the floor, but only slightly bruised. I remember in that same area, stepping on my father’s shoes and circling the room at four years old. I probably won’t ever be able to witness the world he perceives now, how it unnerves him, but I can support him, here, outside his world. I can guide him, and keep him from the troubles of my reality, as he once did for me.
I am learning how to support.
I turn, and I’m back, back to my original partner. He wobbles slightly, and asks who I am, and I tell him, I’m his daughter, Jade. He recognizes me fairly quickly, and I am relieved, grateful that he is still able to return to me. We swing, and I wish time would slow. The song ends, and I thank him for the lovely dance.
He is still the man who can play, in my opinion, the most beautiful song, “Ashokan Farewell,” on the fiddle by memory. He is still able to make jokes, and give me a hug and an “I love you” every day before I leave for work or school.
My father can no longer go out contra-dancing for he is too unstable on his feet. It upsets him, seeing his body fail. However, I dance with him often, in our living room, round and round in circles; and every so often when he picks up his fiddle to play again that same heart and soul that it had years ago comes alive. Some things, you never forget.
Everyone who I’ve encountered, who I dance with, those in my mother’s and my life, keep us upright, keep us moving forward. I try each day to be someone who my father can keep his eyes on—so that he doesn’t lose sight of the world and fall.
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Marina Renton, Andover, MA
“Moments of Meaning”
“What are you thinking about?” I asked June,* a long-time resident who was sitting very upright in a dark blue armchair, eyes fixed firmly on the middle distance. June looked at me, and her expression changed from intent to worry.
“I forget,” she said. Then she saw the picture that I was holding in my hand—a photo of two dogs looking at each other from adjacent cars—and immediately her face brightened. “It’s nice,” she said. After talking about the picture for a while, June was smiling and happy, and ready to get up out of her armchair and head to supper.
I met June a year ago. A community service requirement had brought me back to the assisted living facility where my grandfather had lived for the final six months of his life. I had chosen to volunteer at the facility after his death as a way to say “thank you” for the compassionate care he had received—as well as to, quite frankly, pay penance for all the times that I had lost patience with my grandfather when he asked, for the third time in the same visit, for help in checking his e-mail.
My first weeks of volunteer work were straightforward: helping residents with computers, serving drinks and snacks, and so on. One day, however, the director brightly announced that I was being invited to serve as a volunteer on the “fourth floor.” The news terrified me: the fourth floor is the secure unit that houses memory-impaired residents, those suffering from Alzheimer’s disease and other forms of dementia.
As I punched in the special code and the elevator doors shuddered closed, I began to tremble. I imagined that I had been consigned to a hospital-like, fluorescent-lit environment peopled by residents who either stared vacantly into space or dashed around wildly, yelling incoherent threats.
Instead, once the elevator doors opened, I was greeted by a perfectly ordinary fish tank. (Although I was told to watch the elevator while the doors closed to make sure no one tried to make a break for it!) And my tasks were generally simple. I took residents on short walks outside the building. I painted nails or kicked around an inflatable beach ball.
Although the workload was very manageable, the psychological adjustment and growth required for me to work with memory-impaired elders took me by surprise. Initially, I was discouraged and disoriented by the fact that when I returned to the fourth floor after a week’s absence, I would not be recognized by the person whose nails I had painted on my last visit. The polish wasn’t even peeling yet!
“What’s your name?” asked a resident who was always very businesslike and loved exchanging information.
“Marina,” I answered.
“Marina,” she said, “It’s nice to meet you. Will you come back again?”
“Of course, I come here every Friday. We had a really nice conversation last week!”
The volunteers weren’t all the residents failed to remember. One day last July was dubbed “Ice Cream Day.” I helped to prepare and serve ice cream cones to eager residents, all of whom were appreciative. After the last cone had been eaten, I shepherded a small group into the living room to play a game. In the room stood a white board bearing the happy announcement, in red marker, that it was Ice Cream Day. One of the residents turned to me eagerly and asked, “Ice Cream Day? When are we having ice cream?” I had to explain that she had the ice cream—not 15 minutes before. The experience didn’t ring a bell.
Another week, I witnessed a rather sweet exchange between two residents, Harold and Sadie: Harold offered a small bag of Hershey chocolates to Sadie, saying she deserved them. Sadie accepted them with many thanks. Ten minutes later, she held the chocolates out to me and asked, “What should I do with these?” Rather embarrassed (for Harold was still sitting right next to her), I said, “Well, you can eat them! Remember, Harold gave them to you!” Sadie smiled, looked to Harold, and said, “Thank you very much!” Harold, however, appeared crestfallen. “She had to remind you?” he asked mournfully.
Clearly, the fourth floor residents were obliged to practice a radical version of “living in the moment.” They had no option. This mode of being required me, as a volunteer, to adjust my own expectations as well. While at first I found it difficult to start each visit as a stranger, with no bank of goodwill and no hope of anything beyond fleeting recognition, I, too, learned to practice an extreme form of “here and now” consciousness. The residents taught me, for instance, that, unlike at my high school, dancing doesn’t have to be about image and social games; it can simply be about the joy of moving to music. And they taught me as well that connecting with others in the moment can be—and sometimes must be—its own reward.
As the months went by, I mastered the simple activities assigned to me and became more adept at following the residents’ lead in living in the moment and for the moment. I began thinking about new ways in which I might contribute to increasing the residents’ happiness. As one resident often reminded me, “depression” was everywhere.
Around this time, I happened to hear a brief piece on NPR introducing TimeSlips, an improvisational storytelling program designed specifically for people with dementia. The program entails presenting a small group with an evocative picture—for example, an elderly woman jumping unnaturally high in order to catch a Frisbee. The group is invited to tell a story about the picture. Every response, whether or not it “fits,” is acknowledged and recorded.
A small group of residents sat in a circle with me to discuss a picture of a woman on the beach. They looked at the picture for a while and introduced ideas about why the woman was at the beach, who she was with, and what she was doing.
“Having fun at the beach. That’s all it is,” one resident, Roger, concluded. He stood up, painstakingly positioned his walker, and began to walk up and down the hall with a faint smile on his face.
“What are you doing Roger?” I asked.
“Just taking a walk on the beach,” he answered. “Having fun on the beach.”
Seeing an opportunity to introduce storytelling to the fourth-floor residents, I signed up for TimeSlips training. Months have now gone by since TimeSlips became part of the fourth floor activity roster, and I continue to be impressed and gratified by the stories I hear. Residents who can’t remember their birthdays are confidently providing backstories of moral complexity and humor, their imaginations allowing them to reclaim the authority and wisdom denied them in more mundane transactions.
When I read back a story to a group and got to a string of comments from one resident in particular, she jumped in and said with a smile, “I completely agree!” Even though she didn’t recall that she had made the comment herself, she still felt validated by hearing her own opinion represented. I hope that all residents experience the same sense of empowerment.
My only regret is that my grandfather is no longer there. If he were, I hope that I would, after explaining yet again how his e-mail worked, know enough to smile and say, “Now, Papa, why don’t we tell a story?”
*Names have been changed to protect confidentiality.
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Audrey Chou, Northbrook, IL
“What I Didn’t Learn From Books”
By the time I was 10-years-old, I knew everything.
School had taught me the basics: how to add and subtract, how to write a decent book report, the names and capitals of all 50 states. And every answer that wasn’t provided by school was supplied by books.
Harry Potter was my role model in dealing with bullies and unwelcome attention. Divorce? If ever that happened, Amber Brown had navigated the way through for me. Surviving in the wild on my own would be simple with Julie and the Wolves as my guide.
At age 10, I was prepared. I could earn A’s in class because I had paid attention in school and I could knock down any of life’s obstacles because I paid attention to my books. When one of life’s lessons showed up to take me on a journey, I would not be weathering hitherto uncharted territory; I would be passing through the familiar ground I had already dealt with in my books.
I knew of every kind of adversity that could possibly present itself, and I would know what to do if it did. I was 10-years-old, and I was sure of this.
Eight years ago, my great-grandmother was living alone in a condo in the city. It was an ugly place, by all modern standards—a squat, bland, brick building that sat too close to the highway and had an excellent view of the grocery store across the street. But for 10 years, it was a favorite weekend destination for my family.
Every Saturday, we piled into our glorious red minivan and braved the weekend traffic. Every Saturday my brother raced to ring the doorbell, my sister pounded on the door, and I waved like a maniac at a second floor window. And every Saturday my great-grandmother, my Boki, would appear at the window and show off a gap-filled smile before retreating to buzz us in.
I was 10, and I was a know-it-all, but I wasn’t naïve; I knew my great-grandmother would stop coming to the window one day. I knew she would die. I didn’t want to think about it, but I knew what the inevitable was. My books had taught me this.
I was also convinced that the end was nowhere near. Boki may have been 90, a fact of which she was extremely proud, but it really was just a number. She was still steadily climbing the stairs to her condo, fearlessly trekking through the streets to do the grocery shopping, and expertly nursing the plants that tickled her living room ceiling.
We were all certain that this was the way it would be until Boki herself decided to stop. My parents were sure because they were grown-ups and knew the ways of the universe. My sister was sure because she was old enough to be told the ways of the universe. My brother was sure because he knew Boki was invincible. And I was sure because that was how the wise and resilient grandparents in my books had gone before—if they even went at all before the story ended.
It took a sudden and eye-opening series of events to prove to us that we had all been fooling ourselves.
First, Boki did not come to the window one Saturday. She had had a stroke: the kind that only required a two-day stay in a cold, efficient hospital, but one that served as a wake-up call for all the grown-ups.
Then, Boki did not return to her condo on the second floor of that shabby brown building. The decision making had shifted from away from her and into the hands of her grandchildren, my mother and her siblings. Instead, Boki came home with us, to our blue cookie cutter house and its extra bed.
This arrangement did not work out the way everyone had planned. Everything we had failed to see while Boki was downtown in her condo and we were sitting in our suburb was suddenly revealed. We had anticipated for everyday to feel like Saturday, with Boki being there to constantly grant us her toothless grin. She wasn’t, however, the Boki of Saturdays in the city.
She was a Boki who sat at the window and watched the cars meander past and the leaves drop from the trees. She asked us if she had eaten lunch and whether we had talked to people whose names we did not know. Everything we had written off as eccentricity in old age and excused as the natural behavior of our 90-year-old matriarch was recast with the realization that this was Alzheimer’s.
For the first time in my life, my books had failed me. Nothing, not a single chapter, paragraph, or line, had hinted that the alternative to death during peaceful slumber, surrounded by loved ones, or by cholera in a Conestoga wagon was something far less dignified and melodramatic, something much more painful to witness. For once, my books had no road map for how to proceed.
I suddenly found myself writing my own manual for this new, unprecedented situation. When my Boki asked me what day it was, I answered her. When she asked again three minutes later, I learned to simply answer again. When she told me a story so rambling and incomprehensible, I realized I didn’t have to understand; I only needed to smile and hold her hand. When she became a different person, told me people were stealing from her and shouted for me to get out of her room, I did what she wanted and left. Then I came right back to continue to be her great-granddaughter, whether she knew I was or not.
It broke my mother’s heart to do the thing she had promised her grandmother she would never do when we moved her into a nursing home. The building was equally as squat and equally as bland as the condo we had already left behind in the city, but there couldn’t have been a starker difference between the two. Where there had been garish green carpet shaded by the shiny fronds of eight-foot plants was bare linoleum and a fake ficus. Homemade soup was replaced by softened meatloaf.
But whatever the nursing home lacked in homey touches, it made up for in care for the residents, able to give Boki what we could no longer provide. The nurses and aides could help her make it through the present day, and we devoted ourselves to living with her in whichever world of the past she inhabited.
We continued to pile into the still-glorious red minivan, continued to brave the traffic every weekend, but now, my brother raced to press the button that let us into a muffled lobby, my sister knocked softly on the door to Boki’s room, and we all waved like maniacs when we saw her.
I hated Alzheimer’s for invading our lives and stealing away my great-grandmother. I hated it for making my mother cry and forcing us all to confront the inescapable finale. But I needed this disease and my great-grandmother to tell me I did not know everything. I needed it to show me there were stories the books left out, stories that I needed to discover and write for myself.
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