Of course, he wasn’t well.
“Listen,” she said. “His memory is almost gone.”
In the call center, the phone booths had gotten much smaller than they’d been years before, when we first arrived. Or maybe I’d gotten bigger. Mami said a few words into the phone and then left it dangling, waiting for me. When I sat on the small ledge, the glass in front of me was smeared with fingerprints. Why didn’t the people clean it after each use? On the other side, another booth stood empty, its glass just as dirty as this one.
Papi’s voice was the same, a smile in it like usual. Relieved, I chatted on about school, about my upcoming sweet sixteen party. I’d suspected Mami was exaggerating all along.
After a few moments, he was quiet.
“Papi,” I said. “Are you there?”
He cleared his throat.
“Who is this?” he asked.
I told him it was me, pronounced my name slowly. Your daughter.
“I don’t have a daughter with that name,” he said.
“Yes, you do,” I said, so quietly.
“I don’t.”
He grew agitated.
“I don’t.”
On his side, someone took the phone, hung it up.
Desperate, I pressed my hand flat against the glass, saw it haloed by those other fingerprints. All of us, trying to push through glass, touch skin. All of us, so far.
Mami opened the door and took the phone away from me, hung it up. She wiped my face, and took me by the arm. Outside, the sun kept shining, and kids chased each other down the street.
The next morning, on a crowded 1 train downtown, I thought about how Papi would never get to ride in a train. He’d never get to feel winter, or see what trees without leaves looked like. Whatever he’d passed down to me—cells that traveled inside my body, from bone to vein to heart—were in the train, inside my body. Wasn’t he in me at that moment? Wasn’t he in the train? Between Papi and me, I found only silence. The hollowness now filled me up, and no matter how hard I tried, I didn’t know how to fill it.
It wasn’t hard to start talking to Papi in my mind. I’d had years of experience preparing, anticipating, guessing his responses (mostly right). The only difference was that now there was no comfort at the end. The only difference was that now I spoke to him mostly in English, and in my mind, he responded in a language he never spoke.
My vocabulary doubled because of language. Tripled, then quadrupled because of a newly acquired reading habit. His language receded until it was mostly gone. Phone calls became painful. Yet, within me his voice grew crisp, loud.
When I decided to go away to college, I struggled to convince Mami to let me go. In our Dominican culture, it was unheard of to allow an unmarried young woman go off on her own. Then, I remembered the strength of Papi’s logic whenever he spoke to my mother, and in imagining how he would have convinced her to let me go, I mimed the words I was sure he would have used in my defense. If she wants a different life, she has to leave home, he would have told her. He would have reminded her. That’s what I said, and it worked.
In college, there was a slight nudge that pushed me toward the boys who wouldn’t try too hard to persuade to do what I wasn’t ready to do, boys who wouldn’t hurt.
When I got home for Christmas break, I slept for days on end, eating like I hadn’t eaten in months, remembering a hunger I hadn’t felt since childhood.
When Papi died, a couple of weeks later, I was the last one to find out. It’d been four years since we’d last seen him, but everyone was worried about how I would react. Everyone thought I’d be unable to deal. Maybe because I loved him most?
Knowing he no longer occupied space in the real world was a stunning blow. There are no words to explain how the absence thickened, how this loss pressed on my chest, fractured bone, punctured lungs. Within days of his passing, when we realized there was no way to afford getting on a plane, there would be no goodbye, I noticed how from time to time the air around me took on a slightly different density, as it does when another reaches over to give a hug, thin air easier to breathe. I was being watched over. Nearly twenty thousand miles divided us, him now under dirt, yet I became certain Papi was with me, just as he’d been all along.
What method do the dead have to talk to us but through our bodies? Since my father died, that hollowness turned into a dull ache in my bones. This ache is the silence between conversations, and I’ve learned to listen for what the silence holds. It is the force that binds us, that needs no tongue. But when I’m too stubborn to listen, picture frames fall.
Once, while wrapped up in a passionate affair, I dreamed we waited for my father so this lover could meet him. In this dream, we both knew he was dead, so it was especially important they were going to meet. My boyfriend made a flimsy excuse and left the meeting place. I’d been left with the uneasy feeling Papi was already there, looking at us from afar. In the morning, unsure what to make of it, I shared the dream with him. Sounds like a warning, he said. Things fell apart quickly after that. Whose shady intentions can stand up against that kind of protection?
I only visited Papi’s gravesite once. The trip back home was the first thing I saved for after graduating college. Only three out of the four of us got to make it, since Evelyn had a small baby and was unable to travel. We were only a few feet away from his grave when Shany fell heavily over it. The raised tomb was a rectangle made of concrete, crowded on both sides by other people’s dead. Shany’s sobs shook her shoulders. I’d never known one set of eyes were capable of that many tears. Lindo, who’d been back in the Dominican Republic a few years by then, followed closely behind. He cried without restraint, without shame, whatever machismo he’d held onto forgotten. Eyes dry, I shifted from foot to foot. You’re cold, Lindo said when we walked away. I nodded. The moment mired by reality. How could my father fit in such a small rectangle? What had they done so his body stayed bound, didn’t break through the concrete? How could a giant be made to fit in a place meant for a human? That day, Lindo and Shany went to his grave to say a long overdue goodbye. But I wasn’t there for that. As we walked away, I didn’t once look back. Body lighter, my limbs lengthened; skin thicker, my bones hardened. Bienvenido Natera—my body is his final resting place.
UNFORGETTABLE
An Excerpt from On Pluto: Inside the Mind of Alzheimer’s
BRENDAN MCGEORGE O’BRIEN
Memory is a powerful thing. I think of it as a time capsule, protecting life’s most unforgettable moments. It reminds me why I find comfort in hearing my dad’s voice and joy in seeing his face. My memories of him paint a picture of the man who has been my lifelong hero, my mentor, and my best friend.
That’s why Alzheimer’s is terrifying; it leaves a menacing wake in its path. As my father’s memory erodes, so too will his perception of who I am, who he is, and of every moment we’ve spent together.
It’s a disease that has no compassion for what I hold closest to my heart, the memories I’ve shared with my dad. That’s why the word unforgettable has new meaning for me these days.
Growing up as a salty local on Outer Cape Cod, it’s a birthright to have a deep respect and appreciation for its natural beauty. The Cape has always been a special place to my dad, so of course, it became a special place to me. He never missed an opportunity to profess his love of its surroundings, and as a firstborn son, I was his sidekick in exploring its splendor.
One thing I’ll never forget was watching the miles of magnificent coastal dune erode into the Atlantic Ocean. It felt like our home was slowly washing into the sea, one winter storm after another. I think that’s why my dad cherished the Cape so much; he knew it wouldn’t be there forever.
Years later, I learned that the sand washed out from those dunes would traverse miles down the beach, often forming into the perfect sandbars that I coveted as a young surfer. Dad’s wisdom still rings true: “It takes time, but nature always finds a way to fight back,” he’d say.
Almost 25,000 y
ears ago, Lower Mill Pond in Brewster was just a lifeless crater discarded from the Laurentide Ice Sheet. The pond, long-sufferingly, had spent millennia transforming itself into a brilliant habitat, one of Cape Cod’s historic kettle ponds. In childhood, it was a sanctuary to me, another place where my dad taught me of nature’s unrelenting force and to marvel at its creation. We were fascinated by the herring that thrashed upstream in March to spawn, the spring leaves that grew back from a dark winter, and the pond that would thaw just in time for us to grab a canoe and explore. Nature’s timing is perfectly flawless.
A couple decades later, I found myself sitting at the edge of that same pond. Skirting the tip of a large granite boulder, a remnant of the ice sheet, I sat quietly next to my father blankly staring into the distance. The crowds were gone, the air was light, and winter was just a few storms away. Just like the old days, but watching the autumn leaves drift in the wind and the flocks of osprey fly south, it felt different this time. A haunting silence loomed between us, our emotions bottled, ready to let fly. My dad had Alzheimer’s and there was nothing left to say.
Earlier that day, I had signed his power of attorney documents, now becoming the guardian. Our sinking reality snapped into focus; it was finally time to let go.
Tears began streaming down my father’s face, “I’m so fucking scared, Brendan,” he mustered, “I don’t know what’s happening to me!”
Seeing him cry for the first time has burned itself into my memory. I remember wanting to tell him that it would be okay. But I couldn’t. I knew it wouldn’t be okay. So we buried our heads into each other’s arms and sobbed, letting our fears of the unknown cascade into the pond. It was one of those unforgettable moments, and we shared it together.
We’re often told the torment of Alzheimer’s doesn’t start in a nursing home—far from it. It’s a journey that takes decades, starting long before your bags are packed. There is no map, no trail, no True North, just a destination that no one wants to reach.
In hindsight, our family had blissfully ignored the blatant warning signs. My dad’s once “artistic quirkiness” and consummate presence was slowly transforming into an introverted, disconnected personality. He had always been the catalyst of a party, the kind of person everyone wanted to be around. But now he seemed alone, misunderstood. Life was a lot easier when we thought that was just part of getting older.
What we were never told was that a tsunami was heading our way and all we had was an umbrella. We found our shelter through empathy, doing our best to understand. My dad compared it to a surfer paddling out in the middle of a nor’easter—frantically using every ounce of energy to get beyond the sand bar, duck diving beneath a giant crashing wave milliseconds before it could wash you back to shore. But the second you come up for air, there’s another one right behind it, pounding the sea in front of you. It’s a draining battle where nobody wins. But the harder you paddle, the longer you’ll last. I’ve learned that much from my dad.
The hardest part for me is that the story of our lives together, as a father and son, is slowly drifting away, one unforgettable moment at a time. From his first grandchild to the ones he’ll never know, our first trip to Fenway Park, driving me to North Carolina for college, it all washes away. The memories erode. We start it all over again. Eventually, there is no such thing as unforgettable.
But if nature can find a way to heal, I think we can, too. Our journey with Alzheimer’s has been filled with challenge, but it has also been filled with opportunity—opportunity to share our story, to strengthen our relationships, and to cherish the time we have left.
The war against Alzheimer’s is one we can all wage together, but the only way to win is to talk about it, take it public and bring it out of closet. With more than 50 million afflicted across the world, we have power in numbers. Nothing will be done until local, state, and federal governments hear from the masses. So it’s up to us. We’ll never fully understand the disease until we collectively listen to the stories of those affected, the frontline. It’s the truth, in our vulnerability, that will create real progress.
Mom, Dad, I’ll always be right there with you guys, fighting dementia with all I have. Everything you’ve taught me will live far beyond our years, and I wouldn’t trade that for anything in the world. Our love is what’s truly unforgettable, wherever we may be.
BRINGING JOHN BACK HOME
DANIEL C. POTTS, MD, FAAN
“We want to stay with John. We are committed to him, and to preserving his story.”
He wandered in reluctantly. A sky-blue windbreaker was the first we were to see of him and would be the last. (God must have used the same paint for his eyes.)
The steel-built Vietnam veteran stiffly entered the first art therapy session and sat with crossed arms and pursed lips at table’s end. Two female student partners timidly took their places beside him and began the humbling and uncomfortable task of learning how to communicate with someone whose verbal skills were being lost to dementia. John had severe expressive aphasia, the loss of expressive language, though he retained most receptive abilities. Thus, he could understand what was being said, but had great difficulty expressing thoughts and feelings through words. His aphasia accompanied three other characteristic features of Alzheimer’s disease: amnesia (memory loss), apraxia (inability to perform familiar tasks), and agnosia (inability to process sensory input).
“This may be challenging,” I whispered to one of the students, out of earshot and eyesight of John. I wanted to encourage them, and to let them know I would be nearby to help.
As the art therapist explained the directive for the first session, it became apparent that John was not going to be making any art. At least, not the art that was called for in the directive. He spent most of the session coaxing his student partners to draw and cut shapes to place on a white paper background. Almost no words were understandable, but occasionally one could make out, “I need to do what I want to do,” or “it has to come from in here,” putting his hand over his heart.
A neurologist and the instructor for the course, I sat in the background observing, thinking how much John reminded me of my father; I wanted to go near and encourage him. To tell him I was proud of him (just for showing up for life) like Dad always had told me. I thought perhaps, at some level, he needed to know.
Dad’s favorite color was blue. Sky blue. Like his own eyes. And John’s.
My father, Lester, became a watercolor artist in the throes of Alzheimer’s disease, having never painted prior to the diagnosis. Witnessing the expression of Dad’s personhood through art completely changed my medical practice, as I grew in empathy, understanding, and hope to share with others on a similar journey.
After Dad’s death, my family and I created a foundation, Cognitive Dynamics, with a mission to improve quality of life for persons living with dementia and their care partners through the expressive arts and storytelling. Our primary initiative was inspired by Dad’s story and art: Bringing Art to Life pairs students with persons living with dementia. Each semester, students from diverse backgrounds develop friendships with their dementia partners, creating art together under the guidance of an art therapist, learning the life stories and character traits of their partners, and honoring them by creating leather-bound legacy books filled with art, letters from loved ones, important life events, and writings from the students. The program builds empathy in the students, lessening the stigma attached to dementia and aging, and promotes self-growth. It validates persons with dementia in their current state and gives respite to care partners.
Observing the development of these intergenerational relationships over the years has been one of the highlights of my career. Each semester has its relational gems. But none has affected me more profoundly then that of John and his two student partners.
John was a tough nut to crack, his hard shell impervious to most who tried to engage him. But I held out for that almost miraculous transformation I’d seen happen many times before, when the r
elational phenomenon finally unfolded through a space cleared by mindful listening, compassion, intention, and presence.
Sure enough, John started warming to his new friends. His body language became more open, and he began participating more actively in the art projects. In one very tender exchange after several weeks of art therapy, John reached over and touched the hand of one of his student partners, telling her she had done a good job with her art. Later that day as they escorted John out of the art therapy session, he told his student partners that they were “good people.”
The breakthrough came the day musicians visited an art therapy session, playing and singing familiar songs for the students and their partners. By the end of the session, John was dancing with anyone nearby. He even came up and placed his arm around me, harmonizing with me on “Amazing Grace.” This was a moment of deep connection which I feel at some level will never be forgotten. We witnessed John’s spirit breaking through the shackles of dementia that day, singing and dancing its way into all our hearts. His students were profoundly moved by what happened in that room.
That was the last time we saw his blue windbreaker, blue eyes, blue soul. Two days later, John wandered away from home in the middle of the night. His body was found six weeks afterward in a ravine not far away.
When it became apparent John likely would not return to our program, I met with his students to give them options about how to finish the semester. Either they could stay with John, completing his life legacy book with information they already had garnered and impressions they had developed, or we could choose another partner for them with which to work over the remaining weeks. Without hesitation, both said they wanted to stay with John, to honor his personhood by creating the best legacy book possible for his family, and simply to express the gratitude they felt for the experience of working with him.
For the remainder of the semester, John’s students centered themselves completely on the person they had come to know, interacting together within this personhood during each ninety-minute art therapy session. They reminisced while discussing John’s unique character traits, and the impact he had made on them in a few short weeks. It was as if John, in all the deep blue of his selfhood, had sashayed right back into the room.
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