The Never Never Land
Grace Kearney of Baltimore, Maryland is the grand prize winner of the 2012 AFA Teens for the Alzheimer’s Awareness College Scholarship. Recently she contributed the essay she submitted as part of the competition to Care Advantage magazine, a free publication for caregivers of people with AD and related disorders. You can contact the magazine at: info@alzfdn.org. Their website is http://www.afacareadvatage.org. The magazine is published quarterly.
The topic of the essay was to be a reflection on how Alzheimer’s disease has impacted the applicant’s life, family or community. Kearny wrote the essay after spending three years as a research assistant at Johns Hopkins Hospital in the Department of Geriatric Psychiatry. As part of the research practicum course at her 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. Kearney plans to attend Stanford University in Palo Alto, CA in the fall and hopes to become a physician specializing in Geriatrics.
In her essay, Kearney described observing a nurse administering a diagnostic test to a new patient and compares what she learned then and later at her work at the clinic to The never, never land of Alice in Wonderland in Through the Looking Glass.
The nurse asked the man, “Where are we today, Mr. Perkins?”*
“Appling, Georgia. I wouldn’t dream of leaving.”
“What day of the week is it?”
“Tuesday.”
“What day was it yesterday?”
“Tuesday.”
She thought of the Red Queen’s words: “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.” Later, Kearney says it hit her that this 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.”
Her insight is remarkable. She says that gradually she came to understand the world inside each patient’s mind is as legitimate as the world inside hers—that our interior reality is the only on that matters.
When Mr. Perkins returns to the clinic six months later, Kearney does not attempt to bring him to Baltimore, but instead, she travels with him to Georgia. When he asked her to close the windows, because “the flies are ruthless this time of year,” she does it, because she knows that the flies are as real to him as the Baltimore heat is to her. In doing so, she accomplishes what she as an eight-year old reading Through the Looking glass could not do; she manages to join his tea party.
Kearney wrote about what she leaned working in that geriatric clinic. The day she realized that the clinic receptionist who had snapped at her was the wife of a dementia patient, she learned compassion. She said you never know what sort of pain a person is concealing behind their “plastered” smile. She learned patience when she had a conversation with a man who needed several reminders to keep his shoes on and his shirt buttoned. She said that Alzheimer’s patients may often seem and stubborn and confused as young children, but they prove invaluable source of wisdom if you only pause to listen.
But, most importantly for one about to pursue a career in medicine, she said, she learned that caring for those with Alzheimer’s is not about ridding them of their disease, but helping them live in a way that is dignified and graceful until the very end.
In the course of her visits to the geriatric clinic, there was one phrase that she heard more often than any other. When patients were asked for their most fervent desire, she heard again and again, “I just want to go home.” Kearney said that a doctor’s main object for these patients should be to find that place where a patient can feel at home, and he or she should do everything possible to help patients get there. A worthy goal for all of us entrusted with the care of dementia patients.
* A Fictitious name is used to protect privacy.
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