While you're still here: Honoring my grandmother and others with dementia

I was 8. It was a summer afternoon, so hot the air felt swollen, flush with the smell of jasmine incense. I sat on cushions while my grandma knelt behind me, weaving my hair into two thick braids. The setting sun made yellow of her hands, aging her, like the corner of a photo that has discolored over time. We were gossiping about some story or another. And water dripped from the ice in her mouth, muddling her fragmented English. I laughed when she forgot the word for squeeze, and laughed harder when she mimed it instead.

I am 21 now. It has been five years since my grandma was diagnosed with Alzheimer’s, and in the years since, I have thought often of those small moments. They are reminders of the duty I have to her, to the relationship I must honor, and to the life she still has to live.

Especially on days like today. Today, when she faltered at the sight of me and struggled to recall who I was until, exhausted by the effort, she slipped back into sleep without saying a word. I will myself to never lose sight of her personhood, even when she forgets it herself. Watching her lose her independence has compelled me to reflect on what we owe to those most vulnerable among us.

When I began this essay, I intended to explore selfhood through the lens of those with dementia. I chose dementia patients because, like many, I assumed their disease severed them from their selfhood. Alzheimer’s, often described as a “living death,” reinforced this perception. Yet, as I read further, I realized how mistaken that assumption was.

Studies show that even in late stages of Alzheimer’s, a sense of self persists. Researchers like Ruth M. Tappen and others have found that failing to recognize this leads to task-oriented care, neglecting deeper needs and lowering expectations for quality of life. Similarly, findings in Aging & Mental Health suggest that sensory awareness in dementia patients remains intact, shaped by the caregiving environment.

The more I learned, the more I felt we had oversimplified the dementia patient’s experience. The narrative of Alzheimer’s as a purgatory, “where individuals [wait] for [their] body to forget how to keep itself alive,” is not only incomplete, but unjust. I began to question whether it wasn’t our own belief in their fate that condemned them to it.

These revelations profoundly changed my approach to caregiving. During my 24th shift as a certified nursing assistant, I was allowed into Maria’s room for the first time. She lay asleep, so still and small that if not for the steady rhythm of her feeding pump, I might not have known she was alive. She seemed already gone.

When she stirred awake, she smiled at us. My chest tightened with a feeling I did not recognize then: pity. I bathed and changed her, dutifully and silently, afraid to tire her with conversation.

Then one morning she asked me to do her makeup. “Do you mean your lotion?” I asked, confused.

She shook her head gently and gestured toward her bedside drawer. I opened it — a small bag of MAC cosmetics.

“Wow, Maria, you brought your own makeup?”

She nodded, but I hesitated. Then she placed her hand on mine and smiled, and I knew I would do anything she asked. And so began the ever delicate, ever careful process of adorning her face.

Foundation. Concealer. Mascara. Blush. Lipstick.

Every morning after that, we repeated this ritual: bathing her, dressing her in fresh clothes and applying her makeup as her hair dried. At the end, we’d sit together, looking in the mirror, and I would tell her how beautiful she was.

Maria’s request challenged a belief I hadn’t even realized I held — that people in later stages of life were merely existing, their days of living behind them. My pity, though well-intentioned, kept me from recognizing the life still within her. I had believed my role was to ease my residents' final days, to simply complete the tasks they could no longer manage.

Maria taught me to find new meaning in these moments.

Now, when I am brushing a resident’s hair, doing their makeup, changing them, I feel I am sharing in a sacred act. Because beauty is not vanity. It honors our bodies and our souls, affirming our identities and our places in the world.

My story with Maria is a simple one. In fact, it is its very simplicity which I came up against, repeatedly, and with great frustration. I could not find the right words to communicate the extent to which such an unassuming story changed my relationship with caregiving.

Having shared it now, I recognize there truly was no way for me to write it grander than it was. If my story seems simple, it is because caregiving is simple.

As I write this I think of the Japanese concept of ma, a term filmmaker Hayao Miyazaki described as the time in between claps: emptiness, intentionally left to allow for reflection and presence. By using ma in his films, Miyazaki creates space for the audience to experience the character’s feelings. As caregivers, we live constantly in the ma — in the spaces between what was and what remains.

There is no glamour in geriatrics. Unlike fields like oncology or neurosurgery, nothing we do will cure our patients. They are going to die. We know this, and we nurture them still. There is a life to be lived. There is a self to be nurtured. We must not forget it. We must make that worth something for them.

We must sit with these small moments, the ma, and find meaning in them, because if we are honest, that is the most we have to offer them. In “feeling along with them,” we reify an existence that is often overlooked.

It is thus my hope that in the end, you will see the greatness in small moments, and my story will not seem so small any longer.