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?”
“What day of the week was it yesterday?”
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
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.
*Name changed to protect privacy of individual.
** Carroll, Lewis. "Queen Alice." Through the looking-glass and what Alice found there. New York: Random House, 1946. 56.
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Caleb Julin, Altamonte Springs, FL
A Penny for Your Thoughts: A Jar of Memories
An unpretentious jelly jar filled with pennies occupies a small portion of my bookcase. It is not an attempt to be frugal, nor does it have numismatic purposes; I do not even know the number of pennies contained therein. Rather, my jar of pennies serves as a memorial of the fondest memory I have with my grandfather, Stan Julin, who died last summer of Alzheimer’s disease.
For much of my grandpa’s life he had a unique disdain for pennies, seeing them as paltry. At the end of each day, he would empty his pockets of change into a jar. Once, when I was seven years old, my mom and I went to visit my grandparent’s house and found Grandpa in the driveway with a wooden box, filled to the brim with pennies. Upon seeing me, he smiled and told me that if I weighed more than the box of pennies, he would give me the money it contained. Being only seven, I was thrilled at the prospect of earning that much money. The moment of truth arrived after my grandpa rigged a seesaw to compare my weight to that of the box. Stepping on one end of the board, I watched with amazement as the box opposite me slowly raised into the air! The 70-something dollars that the box contained was the largest sum of money I had ever owned. Although the money was promptly spent on a toy that was later sold at a garage sale for a tenth of its original price, the memory remains.
The memory, however, did not remain with my grandfather, for he developed Alzheimer’s disease a few years later. The hardest five months of my life began at age 16, when he and my grandma moved in with my family in January of 2011.
Since his death in June, I have realized that the memories he lost could be equated with the pennies he accumulated over the years. With every memory he lost, it was like a penny dropped in a jar. The more the pennies in the jar accumulated, the less he had in his pocket. But all was not lost. Although both pennies and memory loss may have frustrated him, they have left me with priceless memories.
For most of my life, although we spent plenty of time together, I did not know my grandpa well. He was the quiet type who, having married an outgoing woman, was content to let his wife entertain the guests. Often times he would sit over in the corner reading a book while Grandma and I watched a movie. It was not until he was in the latter stages of Alzheimer’s disease that I finally grew to know the man behind the book. At that point, my mother started having him over to our house several times a week to provide a much-needed break for my grandmother. Being in school most of the time meant that it was not until the summer of my eleventh-grade year that I was ever around for his visits. It was at this time that the first treasured pennies began to plink into my jar.
I rapidly discovered that Alzheimer’s patients, although they may not remember what they ate 20 minutes before, often remember stories from their childhood or early adult years. This propensity provided a new opportunity for me to develop a relationship with my grandpa, and so began a favorite activity for the two of us. I found that, as he was telling a story, he enjoyed having me google different details of the memory, finding pictures, videos or audio clips of things that he was talking about. On one occasion, he told me about an old-time radio show called “ The Shadow,” which he listened to as a boy. I managed to find a podcast of it, and as it began to play, he grew excited and quoted the opening line of every show. “Who knows what evil lurks within the hearts of men? The Shadow knows!” You could see the boyish glee flash in his green eyes—the same eyes that no longer recognized some of his own family members. Plink! The first penny fell into my jar.
I will never forget once when my family had left my grandparents in Orlando and traveled to Atlanta for Christmas. With snow blanketing the ground Christmas day, we excitedly called my grandparents, only to hear my grandma’s crying voice on the other end of the line. Grandpa had gotten confused and run away. About a half-hour later, we got the call saying he was safely home again, but it was on that day that we decided what I had been dreading: Upon our arrival home, my grandparents would move in with my family. Plink!
Change for an Alzheimer’s patient is decidedly stressful because it alters the few things they still know. Thus, moving in with us was upsetting to my grandpa; and on the first morning, he decided to “reorganize” our living room. This was our first of many experiences with his organizational skills, and it was rather amusing. “This place is a dump!” we heard him mutter as he rearranged the flower arrangement, pulled the pillows off the couches, and hid the drink coasters. Later that day, my dad took him on a walk, and my grandfather asked him if they were in the neighborhood where my father resided. Upon receiving the affirmative, Grandpa told him, “I thought I did better for you!” Plink! Plink!
For a couple of months, my grandpa’s escape attempts were quite frequent. Alarms were mounted on the doors, and someone had to be on constant watch. With Alzheimer’s disease, the brain does not reset itself without a specific trigger of a foundational memory. In my grandpa’s case, taking a walk was frequently the source of such a trigger. However, in the same way that a walk could reset his brain, it could just as likely end in an escape attempt. Half of the walks I took with him either began or ended with me chasing him down the road—not because we were playing tag or any other light-hearted game, but because he would get it in his head that I wanted to harm him. I would have to chase him down and convince him that I was just his loving grandson. To the neighbors whose yards I chased him through, we must have been an amusing sight. A 16-year-old boy chasing a 74-year-old man with his shoes on wrong is an amusing sight to anyone but the 16-year-old boy. However, as miserable as it may have been at the time, it deeply affected me. Plink!
All the hours I spent chasing him down the road were worth it for the opportunity to get to know my grandfather on those same walks. On one such walk he uttered some nonexistent word that sounded like nothing more than gibberish and asked me if I had ever heard of that word. Being the brilliant linguist that I am, I naturally replied in the negative. Having himself realized that it was not even a real word, he began to laugh and replied, “Neither have I!” Plink!
Happy times were not entirely absent from those hard five months. My favorite memory occurred during one of his last responsive days. After dinner, I noticed a glum expression on Grandpa’s face. In an attempt to replace his somber look with a smile, I goofily began to dance around the kitchen. “Come on, Grandpa, dance with me!” I shouted. Never dreaming my stoic grandfather would join me, I was shocked when he began to move to an unheard rhythm and replied to my invitation with, “Well, I guess it couldn’t hurt.” The next 10 minutes were spent with my family and me dancing around the kitchen while Grandpa busted moves never seen before. “Stan, I never knew you had it in you! Where’d you learn to dance like that?” inquired my mom regarding his new found talent. To which my grandpa matter-of-factly replied, “You just gotta get in the zone.” Plink!
After two weeks of being confined to a hospice bed, my grandfather finally found rest through death on June 3, 2011. Although those five months may have been the most trying months of my life, I find myself missing them. All of the memories that were miserable at the time have been miraculously transformed into good memories—memories that I will forever cherish. Every time my grandpa stole my homework, ran away or inconvenienced me, I now fondly recall. Those pennies that my grandpa disposed of as waste have been turned into my treasure. It was through taking care of my grandfather that I learned what a misconception it is that Alzheimer’s disease causes memories to be lost. The memories are not forgotten; they are just shifted, collecting like pennies in a jar.
For every memory my grandfather lost, there is one I gained.
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Olivia L. Vehslage, Wethersfield, CT
I could see it in my grandmother’s eyes before she even said a word. All I had to do was watch her focus in on me as I leaned over her wheelchair to give her a hug, and I knew she knew me. It was a minor victory in a battle she’s rapidly losing, but it was knowledge I treasured nonetheless. I was determined to hold up my end of the bargain, saving each word in a corner of my mind, for if she could remember to say my name, I could remember she had. Sitting in a chair across from her, I drank in her struggle, wrinkles fighting laugh lines, powder blush against pale skin, bright blue combating cataracts.
Suddenly, my grandmother pointed at a picture of a six-year-old me resting on the nearby coffee table and remarked in her honeyed southern drawl, “Sweetie, do you see that?”
Studying my younger self, I grinned and nodded.
“That’s my granddaughter,” Nana chatted away breezily. “She lives in Connecticut. She must be… well, I’ve plumb forgotten how old she’d be now!”
My smile froze, slipped off and shattered on the floor. I swallowed hard and felt my hands begin to shake, a nervous tic of my grandmother’s that was passed down to my father and now to me.
I never knew either of my grandfathers; both died well before I was born. Growing up, I idolized my Nana Ruth, a shining example of the steadfast, capable, self-sufficient woman I wish to become. Her first house, the one my father grew up in, lay on the edge of a golf course in the peaceful suburbs of Wilmington, Delaware. As a child, my father, mother, brother and I would make the six-hour drive from Connecticut to visit her at least four or five times a year. She would be standing in the driveway to meet us, always wearing coke bottle glasses and an ankle length dress with a hideous floral print straight out of the 60s. Having lived in the South most of her life, Nana Ruth’s thick accent has never tempered despite raising her family in the North where she’s the only one who says “y’all” and drinks iced tea so sweet a single sip makes your teeth hurt.
There was no exact moment I discovered my grandmother had Alzheimer’s disease. It seemed an impossible occurrence that this amazingly adept woman could ever be unable to fend for herself. Gradually, not remembering where she placed her glasses became not remembering where her house was, which became not always remembering my name. As she reached 80, she moved from her home in the suburbs to an assisted living facility where nurses came to bring her to dinner and to provide medication when needed. My birthday gifts from Nana Ruth used to be highly anticipated; she always knew exactly what to get and her cards would make me giggle. Now, my gift from her is really from my father, who buys a present in her name since she doesn’t recall when my birthday is. The lack of a card in her delicate penmanship just affirmed the reality that had been slowly dawning in my mind, that my grandmother wasn’t the same anymore. The concept seemed absurd, but as the years went on it became more and more like a joke that only I was laughing at.
The image of my grandmother in her driveway is how I like to remember her—the Nana Ruth I hold onto in my memories. I try to pretend that there isn’t a distinction between the strong woman I once knew and the shadow that sits in her wheelchair staring into space, but it’s futile. When I wheel her into the bathroom to redo her makeup and she pulls out a blue ballpoint pen to draw on her eyebrows, I know it isn’t her. When she paints on a coral red smile that looks clownish against her pale skin, I know it isn’t her. Then she looks up at me, the finished product, and I know that if this were a stranger I saw with blue eyebrows, scarlet lips and too bright blush, I would probably laugh a little. But it isn’t a stranger, it’s my grandmother, and my heart just hurts every time I have to feign that she looks the same as always.
German blood runs deep in my roots, something I’ve come to appreciate since strength, physical and emotional, is the principle characteristic I’ve acquired growing up in a family of that ancestry. It’s what defines us, what helps us through the tough times and enables us to weather changes in the tide. German fortitude is how my grandmother endured the loss of her husband and the relocation of three of her four children halfway across the country to Texas. German grit is how my family copes with the demise of my grandmother’s memory as she slowly slips away from us.
I find my own courage through writing, which has become my saving grace in the face of this debilitating disease. When I write about the time I spent in Delaware as a child, I find my grandmother within the pages. Preserving my memories on paper helps me to process what is occurring and to see Nana Ruth as the woman she truly is. Ironically, one of the greatest sorrows of my life led me to discover one of the greatest joys of my life. Recording recollections of my grandmother before and during her Alzheimer’s battle made me realize how much I enjoyed writing about social issues. I have hopes of someday soon writing a novel about the Alzheimer’s struggle so that I might help others who are enduring the same trials, cope with the realities of losing a loved one this way. When I write, I am liberated, and, strangely enough, documenting my sadness alleviates some of the pain.
Even though writing about this changed version of Nana Ruth can be extremely hard, I owe it to her. For my grandmother is so much more than this moment, or this year, or this disease. There will be a time in the near future when she won’t be here physically, even if she is already no longer here mentally. I try to remember this every time we visit her and I feel frustrated that she can’t always recall my name. The German strength, her strength, will pull me through and linger long after she has gone. That is her legacy. That is the image I have aspired after since I was a child, and it does not change no matter how weak her mind has become.
So now, whenever I sit on the couch next to Nana Ruth, I stare into those blue eyes I know so well and relearn the map of her face all over again. In those moments when my grandmother knows my name, she is the one carving a permanent smile on my face so wide I feel as though I could split in half with the joy. When she can’t, I swallow the bitter pill of disappointment and know that, for the love of her, I am whoever she wants me to be.
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