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Through the Looking Glass: Understanding the World of the Alzheimer's Patient

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This essay was originally written as a submission for the 2012 Alzheimer's Foundation of America College Scholarship Contest. It received the grand prize award.

The waiting room could belong to a dentist's office. There are bright lights and comfortable chairs and plenty of People magazines. But the vacant expressions of those waiting makes it clear that they are not about to have their teeth checked. Standing inside the geriatric psychiatry clinic, I feel as if I have already entered something more personal than an internship. Before I can fully absorb the scene, a nurse calls me into her office. She is administering a diagnostic test to a new patient.

"Where are we today, Mr. Perkins?"*
"Appling, Georgia. I wouldn't dream of leaving."
"What day of the week is it?"
"Tuesday."
"What day of the week was it yesterday?"
"Tuesday."

The Red Queen's words spring into my head. "Now here, we mostly have days and nights two or three at a time, and sometimes in the winter we take as many as five nights together -- for warmth, you know."

As an eight-year-old reading this passage from Through the Looking Glass and What Alice Found There for the thousandth time, I found myself laughing long before the punchline. Residing permanently on this side of the mirror, I failed to grasp the absurd logic of the Red Queen's statement, and could only laugh at the suggestion of stacking days for warmth.

In a nurse's office far from that childhood bedroom, I hear echoes of the Red Queen in Mr. Perkins' words, but they are no longer humorous. For it is not a fictional character speaking; it is a person, one for whom multiple Tuesdays is reality. Like the guests at the Mad Hatter's tea party, Mr. Perkins is trapped in time, trapped in an inner world that clashes with his surroundings, yet he is not aware of the dissonance.

Months of observing the same sad scene reveal the futility of trying to convince Alzheimer's patients that they are wrong. These patients are not waiting to be brought back to the real world; they are seeking someone who will validate their version of reality. Gradually, I come to understand that the world inside each patient's mind is as legitimate as the world inside mine -- that our interior reality is the only one that matters. Perhaps there is an objective reality to which most of us subscribe, but the smaller details, the intricacies of the world around us, are to each person unique. My perception of reality, though unaffected by brain disease, is not universal. Acknowledging this, I am better able to accept and welcome the range of perspectives I will encounter in this clinic and beyond.

When Mr. Perkins returns to the clinic six months later, I do not attempt to bring him to Baltimore, but instead travel with him to Georgia. When he asks me to close the windows because "the flies are ruthless this time of year," I comply, knowing that the flies are as real to him as the Baltimore heat is to me. In doing so, I accomplish what my eight-year-old self could not have imagined. I manage to join his tea party.

***

For the past three years, I have worked as a research assistant at Johns Hopkins Hospital in the Department of Geriatric Psychiatry. As part of the research practicum course at my high school, each student has the opportunity to find a mentor at a nearby research institute and complete an independent research project throughout their junior and senior years of high school. Though my research primarily concerns autism in older adults, I have had the chance to meet geriatric patients of all kinds.

Every Wednesday afternoon, I leave the hospital and go across the street to the outpatient clinic, where dementia patients are brought in by their caregivers to meet with a doctor and receive treatment. I have met with them, spoken with them, learned their stories and told them mine, only to be unfamiliar to them the next week. Still, their presence in the clinic has made an impact on my understanding of Alzheimer's disease, my attitude toward these patients and their families, and my plans for the future.

My interest in the aging mind springs from a childhood spent listening to stories of my father's patients, who always seemed too old to cure but too alive to ignore. Though the majority of his patients were afflicted with Alzheimer's or similar degenerative diseases, I would not realize this until the end of the story. The description of a particular patient's personality and background always came first; their medical issues later, almost as a side note. I learned to consider patients as more than the sum of their parts, as people first and foremost.

My father is an end-of-life care physician, and unlike cancer specialists or brain surgeons, he treats problems that everyone will face someday, if we are lucky. No one can avoid growing older or watching as loved ones grow older, and seeing firsthand how painful the transition to old age can be, particularly for people with Alzheimer's disease, has instilled in me a desire to help geriatric patients of my own one day.

Spending time in the geriatric psychiatry clinic has taught me lessons in life as well as medicine. The day I recognized an Alzheimer's patient's wife as the receptionist who had snapped at me earlier, I learned compassion. You never know what sort of pain a person is concealing behind their plastered smile. When I had a conversation with a man who needed several reminders to keep his shoes on and his shirt buttoned, I learned patience. Alzheimer's patients may often seem as stubborn and confused as young children, but they prove invaluable sources of wisdom if you only pause to listen.

But perhaps most importantly to a medical career, I learned that caring for those with Alzheimer's is not about ridding them of their disease (such a thing is currently impossible), but helping them live in a way that is dignified and graceful until the very end.

Ask any child what a doctor does, and he or she will tell you that a doctor saves lives. To me, saving a life does not always mean finding a cure or even making a person live longer. It means allowing patients to live according to their own desires. It means placing yourself in the shoes of patients, and taking the time to learn about their family, their relationships and their past in order to figure out what those desires might be. It means opening your mind to the possibility that there are some things you will never understand, and accepting the fact that others do not see the world the way you do.

In the conversations that took place in that geriatric clinic each Wednesday, there was one phrase I heard more often than any other. When patients were asked for their most fervent desire, I heard again and again "I just want to go home." This sentence contains what I think should be a doctor's main objective -- to find that place where a patient can feel at home and do everything possible to help them get there. As I pursue a career in medicine, this is how I want to save lives.