Alzheimer’s: Remembering what we’ve forgotten

What happens when we move away from the shadow of Alzheimer’s to a world we remember, even if for a moment?

[Illustration by Muaz Kory/Al Jazeera]
[Illustration by Muaz Kory/Al Jazeera]

Listen to this story:

“Honey, I don’t know who you are but thank God you’ve come. We haven’t had music around this place for years,” cried Mrs Young one afternoon, as I arrived with a small guitar strapped to my back and a cart full of drums, rattles, and tambourines rolling behind me.

“What’s your name?” asked Mrs Hall, looking absently into my brown eyes.

I smiled at the two women. I’ve known both for almost a decade.

I’ve kept a bi-weekly appointment with this group of memory care residents for 12 years, and have witnessed the gradual and relentless disease of Alzheimer’s take an unbearable toll on them and their families. The emotional, physical, spiritual, and financial costs are excruciatingly high.

The two women followed me into the dining area, where tables were pushed to one side, and 10 chairs were arranged in a tight semi-circle. The remaining residents trickled in and sat down.

After handing out the percussions, they began (as always) to tinker with the instruments, turning them upside down, shaking them, and occasionally trying to take them apart.

“Is this a hat?” Mr Sims asked, balancing a hand drum on top of his head.

“I’ve never seen these before,” smiled Mrs Young, covering her eyes with two small brass cymbals. “Are they some kind of mask?”

“What am I supposed to do with these?” questioned Miss Poole, tightly holding onto a pair of wooden shakers.

There is rarely a silent moment with this group of residents. They don’t like pauses. I frequently lose my voice before the end of an hour, to keep the pauses filled. I engage them in singing, talking, jokes, and have even danced with them a time or two. If silence arises in our circle lasting more than eight to 10 seconds, many become restless, some afraid, a few angry, and one or two may weep.

This strong aversion to the “pause” is real for most of us, not just those diagnosed with Alzheimer’s. Everything we’re afraid of, running from, or angry about will most likely find and confront us during silence. During a pause.

So we must fill it.

With anything.

And we do.

And yet.

All that is sweet and subtle and holy and true often reveals itself during silence, within the deep quiet of a pause. We often fill the space at a cost to ourselves and to those around us. “Tranquilisation by the trivial,” Kierkegaard called it.

“You are my sunshine, my only sunshine,” I sang, and the residents merrily and loudly joined me on one of their favourite songs. They shook and rattled away, suddenly knowing exactly what to do with their percussion instruments.

You make me happy when skies are gray

You’ll never know dear,

How much I love you,

Please don’t take my sunshine away

Every mouth was singing, every lyric was articulated, and every instrument was played in almost perfect time. The residents were engaged, and most importantly they were recalling and remembering, pulling long-forgotten words and melody away from the death-grip of Alzheimer’s. Briefly moving out from beneath its terrible shadow, and back into a known and familiar world.

We sang the last chorus, finished the song, and then … a pause. A long. Uncomfortable. Pause.

I reached for my songbook, and to my horror, realised I’d forgotten it! My songbook, that contains all the lyrics, chords, and melody lines to every song we sing. “How could you?” I asked myself reproachfully. In decades of working with residents and patients, I had never once forgotten my songbook.

I verbally stumbled around.

“I … um … let’s see … um … how about … um.” I was at a complete and total loss. I knew dozens of songs by memory, but in this dreadful silent moment, I couldn’t remember a single, simple song.

The residents became restless. They fidgeted in their seats, rocked, and shuffled their feet.

“What are we doing here?” Mr Lewis demanded, his voice rising to a high pitch.

“Is it time to go home yet?” snapped the normally docile Mrs Young, her face turning sulky.

Seventy-eight-year-old Mrs Hall began to whimper softly, “My mother was supposed to pick me up from school this afternoon, and she’s not here yet. I’m worried about her. What if she was in a car accident?” (I was later told Mrs Hall’s mother had been killed in a car accident when she was eight years old.)

And I, still mute, had fallen inside a kind of void that swallowed my voice and my memory. I tried to speak. “I … er … let’s see … um … let’s sing … er.” I scanned the hall, searching for a staff member. There were none. I was alone with the residents, as usual.

Should we sing You Are My Sunshine again? I frantically wondered.

No, we couldn’t sing that over and over again for an entire hour. What could we sing?

The terrible pause lengthened. And stretched.

[Illustration by Muaz Kory/Al Jazeera]

Suddenly, Miss Rose, a long-time resident, jumped up, pushed her chair back, and ran towards me like a banshee. Her long arms flopped in the air like a bird attempting to fly, her mouth gaped, her eyes wild.

My God, I thought desperately, what is she doing? Is she going to attack me? I shrank back. But Miss Rose did not attack me. She stopped in front of me, inches away. I smelled a faint blend of perfume and menthol cough drops.

She bent over, placed both hands above her knees, and gasped for air. Then, straightening, she gripped my hand and pulled me towards two large windows. “Come here,” pant, pant. “Come here with me, now.” Pointing to something outside, she finally managed, “Please tell me,” gasp, gasp, “what are the names of those trees, over there, by that big brown building?”

I swallowed the spit gathered in the back of my tight throat and looked out the window at a plethora of green trees – in all shades, shapes, and sizes – and wondered, which trees could she possibly mean?

Miss Rose turned, her eyes searching mine. She squeezed my clammy hand harder. The distressed calls of the residents continued.

“Is it time to eat yet?”

“I need to go to the bathroom.”

“Oak?” I croaked out, in a voice barely above a whisper.

“No,” she said firmly, shaking her head. “The other ones, by that building over there.”

“Oh, that’s a maple,” I said, my voice gaining strength.

“No, the ones way over there,” she emphasised, pointing with a trembling finger.

Mr Sims stood up, put his hand-drum on the chair, and hobbled towards us, followed by Mrs Young. They stood next to us and stared out the window. Mrs Watts and Miss Poole soon joined, the latter pressing her face sideways against the window, leaving moist streaks on the glass.

“Pecan?” Mrs Young asked.

The room grew quieter, the overall agitation lessening.

“Red oak?” Mr Sims asked.

And quieter.

“A peach tree?” quipped Miss Poole.

There were no peach trees or red oaks or pecan trees on the property that I knew of.

“Because I love peach trees,” continued Miss Poole.

“Me too,” remembered Mrs Hall.

And quieter.

“No, but these trees have a bloom that’s a pinkish-lavender colour,” said Miss Rose, with a wide grin. “They’re so pretty. I love looking at them. I’m not sure, but I think I must have loved them my whole life.”

And quieter.

One by one, the remaining residents walked to the large windows and curiously peered out.

We watched and gazed, as if absorbing a Monet or Van Gogh. And as we watched, a kind of wonder and reverence began to reach out from the scene and enfold us. We beheld trees and birds and squirrels. We saw cars whisk by on the freeway. We eyed white puffy clouds as they drifted across a vast, robin-egg blue sky. We witnessed tree leaves rising and falling with the wind. And our breath rose and fell with them. Our watching became deeper and quieter, and gradually grew into a kind of inward watching.

It grew into a moment that would never leave us.

And yet if someone had walked into the room, they would only have seen the back of ten silver-gray heads, whose crease-filled faces were pressed against a large windowpane, with one blonde head among them, and perhaps thought nothing of it. “There’s nothing special going on out there,” they might have reflected, glancing out the window, before moving on.

But the early afternoon light was shining in our eyes. We were earnestly searching for lost memories in the landscape stretched before us. We were searching for ourselves. And the younger woman with blonde hair and brown eyes would, in that moment, learn an inner truth that would guide her the rest of her life.

A busy squirrel darted along the narrow ledge in front of the window with an acorn between his teeth. Laura Young, Julia Watts, and Terry Sims chuckled.

And then another pause. But a changed pause.

[Illustration by Muaz Kory/Al Jazeera]

Though fleeting, something was happening within us. It was as if the single, powerful moment had drawn a protective circle around us, and everything not part of that circle was excluded. We were sealed off from the world. Even the great movement of time had stopped, and the mighty Alzheimer’s disease itself was not allowed in.

And in the circle, what was lost was found.

“CRAPE MYRTLES,” shouted Laura Young, “CRAPE MYRTLE TREES!”

“I see them now,” Bob Lewis cried, pressing his finger against the window. “There, near that building. They’re pink and purplish.”

“There’s a whole row of them,” called out Terry Sims.

“Yes!” sobbed Rose, reaching out and gripping Laura’s shoulders. “Please don’t let me forget the crape myrtles. They are crape myrtle trees.”

Something mysterious, something beyond Alzheimer’s had risen through the fog. Something within each person that was still whole and intact.

Miss Rose half-laughed and half-cried, as forgotten memories stirred her from her depths. Her eyes lit with a tint of girlhood. “I can remember how they smelled. Their blooms are so sweet, almost like lilacs…but softer and lighter. And they felt like crepe paper between your fingers!”

“My neighbour down the street had one in her yard,” Julia Watts recollected, tossing her long gray-white braid.

Bob Lewis and Alice Poole playfully looked at one another, smiling broadly.

“There were two big ones in my backyard at home,” Rose continued. “Behind the garage where daddy parked the car. Me and my older sister Susan played under them when it was hot. Even their bark was beautiful. Remember the colour of the bark?”

“Yes, it was like raw umber, but a little lighter,” Alice said shyly, clasping her hands.

“And the bark was so smooth,” Rose reminisced, wiping her eyes.

Laura spoke up, “And their blooms lasted all summer and were real pretty.”

We nodded in understanding. For the sweet smell of crape myrtle trees had entered into our imaginations, had entered our sacred circle, and fell upon us as a generous soft rain, easing many unnamable sorrows.

The room was wholly quiet.

The only sound to be heard was the rustling crape myrtle tree blossoms stirring our long-forgotten memories, filling the air with an unearthly breeze and sweetness only we could see, only we could smell, only we could feel.

“Crape myrtles trees,” Rose whispered, wiping her eyes again. “Please don’t let me forget them. I can’t forget the crape myrtle trees too. I just can’t.”

The moment at the window lasted only six, or perhaps seven minutes, at most.

Rose’s shoulders abruptly slumped, and the brightness in her eyes faded. She slowly turned and began walking back to her chair, one brave foot in front of the other.

Julia Poole followed. And Laura Young.

One by one, the little gathering of people at the window began the long sojourn back into the unrelenting and unforgiving world of Alzheimer’s, as if climbing a vast, steep mountain. And as the protective circle dissolved around us, we were pulled back into our roles within the human journey. To somehow finish what had been started. To somehow live the lives that were ours alone to live.

After everyone sat, Mr Sims spontaneously sang out an old familiar song, one that we had sung dozens of times. We joined him in our unfettered voices.

Oh when the sun begins to shine 

Oh yes I want to be in that number 

When the sun begins to shine

We were not singing to escape from an uncomfortable pause. Instead, our half-holy singing grew out of the silence, and helped us bear the world we knew we must return to.

“It’s time for me to go home and get dinner on the table,” Mrs Watts suddenly cried out in a child-like voice.

And just like that, the powerful moment completely vanished. And yet had not vanished. Everything had changed, and yet nothing had changed. For somewhere deep inside us, the crape myrtle trees still bloomed, undisturbed by the sorrows and hardships of our human life.

And when we can no longer remember what is most important, when the world weighs heavily upon us, when we think we have forgotten how our lover’s arms felt around us, or the name of our favourite tree – when we feel burdened beyond what we think we can bear – we will remember again. Something or someone will take us firmly by the hand and lead us to a window we can see clearly out of. Lead us to a moment that takes us beyond our forgetfulness, beyond our fear, beyond our sadness, if only briefly.

Perhaps the window will be an old, familiar song. Or perhaps it will be the way silence sounds in a crowded room. Or maybe it will be the memory of a crape myrtle tree with pink, blazing blossoms, and a delicate fragrance that wraps itself around us like an old friend, accompanying us on our long human journey.

And somehow, someway, it will be enough.

For information and support on Alzheimer’s and dementia, consult:

Source: Al Jazeera

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