My family and I were at the airport, and my brother and father had gone to the restroom. To my dismay, my brother returned, but without my father. The rest of my family seemed unfazed, but I was uneasy. I protested vehemently, “You can’t leave daddy alone! He will never find his way back.” Though my dissenting opinion was initially ignored, after ten minutes my brother returned to the bathroom to retrieve my father.
Incidents like this one were not uncommon throughout my childhood. My mother and father were twenty-four years apart in age, and this caused some inconsistency in my younger life. Explaining to my friends that the man accompanying me was my father and not, as they had speculated, my grandpa was a regular occurrence. The age difference was not the only peculiarity in my relationship with my father. Much of our time together was spent searching for a lost pair of glasses, a missing wallet, or various other personal accessories. At first the game was fun; my sister and I would wait until the situation was truly dire to drive up the price that he was willing to pay us for recovering the lost item. However, the issue was clearly greater than lost keys.
When I was nine, my dad and I went to the gas station. His car, after five years of use, still smelled of new leather; I swear he perfumed it nightly. We arrived at the station, and my elderly father stepped out to fill the tank, but after four minutes of nothing, he opened the back door and asked me to work the pump. I battled with the machine and promptly lost. My father, who was growing more frustrated, snapped at me, “Why don’t you know how to work the pump?”
“I’ve never filled a tank,” I replied. “Why can’t you?”
That day, my mom took me to play cards and ended up giving me the news that changed my life. My father, from the time that I had cried of his confusion in the airport, had been in the early stages of Alzheimer’s disease—a slow-working, mind-dissolving disease. For the next six years of my life, I was forced to see first-hand the exact effects of this disease.
Watching my father slip into mindless oblivion with no means to help him was extraordinarily difficult. Not only was the misfortune of losing a great mind and a father enough, but the frustration of being a confused, eleven-year-old child caregiver, while trying to maintain some semblance of a normal life, was miserable. I watched my father’s life fall apart and could find no means of explaining it. He was digressing into senselessness for no apparent reason. My mom gave me books to read and Web sites to visit in an attempt to make the process easier. However, those books were not written to ease the pain of an eleven-year-old. Tips for caregivers included things such as, “Have a plan for getting through the day in order to cope.” I didn’t have a plan for that day. My mom handled the brunt of the difficulty, but what my basic plan included was watching my father forget who I was—another thing the books said would eventually happen. I began to categorize his behavior into the stages that the books predicted. I hated that something else had taken over his actions.
He obsessed over washing dishes, keeping a diary, and listening to a cassette of patriotic music. I helped him upstairs, answered his endless questions, and convinced him he wasn’t “the dean of the law school” (a fleeting hope for competence). He got worked up over events that were to occur that day, and after time, our frustration taught us to simply hide our plans. As we grew older and his mind younger, we began to realize that, quite realistically, he wasn’t going to get any better. I loved him dearly, and so as he retreated into the abyss of his mind, I let him teach me how to live.
As many Alzheimer’s patients become senile, they often grow rude and even violent; my dad didn’t. Instead, as his intellect deteriorated, the love that he lavished on those around him grew greater. I would visit the nursing home after school and was greeted by the mint green paint of his room, a hug, and his, “Hello, beautiful. Do you know how wonderful you are?” As all the details of his life faded away, the only thing that remained was his unconditional adoration for those around him. I have since worked to make the love the essence of my being as it was his.
When he fell from his childhood into infancy, my father taught me something else: to accept help. Even while healthy, he never shunned assistance, and never feared admitting a flaw. As his needs and flaws multiplied, his acceptance taught me to reach out to those around me for the support I needed. He understood that he was incapable of bathing alone, so how could I not understand that I needed to have the support of the family around me. His complete humility and surrender to what he could not do alone showed me the folly of my own solitude. Since then, I have learned what I can handle, and, like my father, what I can’t.
My father died when I was a freshman after having a stroke—an Alzheimer’s patient seldom dies from the actual disease but from something that he or she can no longer fight. Coincidentally, the same year, I took biology, and spent an extensive amount of time on rudimentary genetics. I was fascinated. The idea that our entire body, down to the microscopic level was essentially a code made so much sense, especially in light of my father’s illness. His code had just gotten scrambled. Alzheimer’s personified had hacked into his brain and rewritten his sequence.
I looked back on those years of ignorance and realized that even this “code” explanation probably wasn’t complete. I did an eleven page research paper on the basics of Alzheimer’s following this realization, reading scientific journals, Web sites and books. All this research came to the conclusion, however, that no one quite knew what Alzheimer’s was, let alone how to fix it.
I wanted to know. I loved the reading, and learning about the way the brain worked enthralled me. Not only did I love the subject, but I had a goal. I wanted to find the cure for Alzheimer’s disease. I had seen and experienced its effects too well and wanted to use my newfound love of the mind to help those who were in similar situations to my childhood. I knew that I was supposed to help those who were thrown into the same turbulent environment as me.
I didn’t have a normal childhood, but looking at the way I live, the things I do, I know that regardless of his forgotten things, my father knew how to live and now, by extension so do I. I hope to further my knowledge of what my inquisitive fourteen-year-old self labeled “code.” I want to supplement the pain of a torn eleven-year-old. And I want to highlight the foresight of my eight-year-old self who immediately saw the essence of my father’s illness in the airport.
1st Runner Up:
Terra Joy McNerthney, Makawao, HI
On His Own Terms
In the center of the shelf above my desk there is a card. Two wolves, one small, one large, stand erect amid a field of snowy white. The large wolf, its white fur brindled by grey, stares in profile to the right, looking out at some distant horizon. Its smaller, younger companion, fur pearl-white, turns its head to face the frame head-on. Both wolves are intent upon their purpose, one looking now, one looking ahead.
Inside the card is a message that is barely more than pen scratches. It is only because I know the hand that painstakingly scratched that name that I can read it: James McNerthney. My grandfather, Grandpa Jim, sent me this card on his last Christmas. I was many miles away, and visiting him would come later, but he thought of me and sent me this card and a fifty dollar bill. Grandpa continued to think of me, and he never forgot me, even as his eyes dimmed to the fog of Alzheimer’s disease. Even in his last weeks, in his own way, Grandpa saw the present and the future, purposefully, like a snowy wolf.
Two months before he passed away, I visited Grandpa for the last time. Resistant to nursing home care, he instead lived with my aunt and cousins in Washington state. His mind was piecemeal, but he recognized me. At one point during my visit, Grandpa became convinced that he was at an airport. I held his scrawny arm, feeling the muscles and tendons continue their work, as he searched around my aunt’s small house for his flight. I thought of the broad, golf-playing, warm man I had grown up knowing, and looked at the form he had dwindled to. He did not seem lost, however. Although he was obviously deeply confused, lost somewhere within his mind, he still moved with purpose and drive, following his own searching instincts. As he became calmer, I eased him into a kitchen chair and squeezed his hand.
“Thank you, Little Person,” Grandpa whispered. He was still my grandfather, the only one of my grandparents to live to see me grow to a young adult, one of the few people in my life to love me unconditionally and fully. And he called me Little Person. I am sure my grandfather called me many endearments in the seventeen years he knew me, but whenever I think of him, I first hear his voice crackling like a gentle hearth-fire. Then, I see his mouth smiling to call me Little Person: little, yes, but a person, a full human being, someone to understand. Both my Grandpa and my parents always believed in listening to me as a person, not just a child—but as Grandpa’s sharp mind began to leave him, our positions were reversed. It was my job to see Grandpa not just as an old man, but as a full human being, someone to listen to, talk to, and be with. His view and comprehension of the world had changed, but his essential drive remained.
Throughout our visits, my father and I endeavored to treat Grandpa as exactly what he was: a person. That he looked at the world through a different veil had not changed that fact. As he sat at the dining table, he asked for paper to write a letter to my mother. My first thoughts went to the obvious facts: Grandpa likely did not have enough concentration to write a sentence, his handwriting was shaky, and the experience could be frustrating. However, it was not right for me to make the decision for him and coerce him. After I rooted a piece of note-paper out of my Aunt’s kitchen, Grandpa scrawled my mother’s address as I dictated to him. He smiled once again, proud of his accomplishment, and asked me “Little Person, is that right?”
Carefully looking at pen marks I could barely decipher, I answered honestly “It looks good to me.” I had given him the option to try and to explore, just as I would give anyone else.
To me, there was no other alternative. Grandpa saw life in his way, by his standards, and these standards were exactly as valid as my own. There was no saying that one view was more “right” than another by any logic but the logic of the moment, for all ideas had the potential to be creative solutions. Basic respect and understanding was the key, not only to my relationship with Grandpa but to every type of relationship: parents and children, husband and wife, even friends. I would respect Grandpa and his ideas, as well as doing my best to understand the world as he saw it. Yes, Grandpa was a man with Alzheimer’s disease. But he was a man first—a man I loved dearly and respected completely.
Alzheimer’s was but a circumstance, and it was certainly not all he was. As a man, he did not deserve to be coerced or infantilized. When I stood in the kitchen with him at eleven o’clock at night, trying to tell him he would sleep easier if he took the pill I offered him, my jet-lagged and exhausted brain felt a strong urge to order and insist. However, I knew that not only would doing so be disrespectful and wrong, it would be confrontational and useless. I had no right to force Grandpa to make a choice; even one that I assumed was beneficial. His life was his own to rule, no matter what plagued his mind. In the end, he never took the pill, and settled back into bed with my help. That night, he made a decision, and I believe his tired mind rested more calmly for it. He was a person. A Big Person to my Little Person.
Two months after I visited him, Grandpa stopped drinking water, and lay quietly in bed, breathing shallowly. He chose to leave his life as he had lived it: calmly, purposefully, and on his own terms.
When I returned home from his funeral, I found the Christmas card Grandpa had sent me in a pile of posters, and promptly placed it above my desk. I wonder how Grandpa knew that the wolf is my favorite animal: I do not remember even telling him. At the time he chose the card, Alzheimer’s had already begun to exact its painful toll on him—but, from that different world view, he had selected a meaningful, beautiful, and perfect card for me. Those two wolves have served as countless metaphors and inspirations for me as I watch my own present and gaze ahead into a white-bright future.
2nd Runner Up: Anupa Gewali, Henderson, NV
An Unfair, Unknown Diagnosis
The table was about three feet by four feet. It was wedged between two cabinets, located in the back of a musty room with low ceilings and daylight shining through the grime-covered windows. In a space where barely two chairs would be expected to fit, five were fighting for room. I sat there for four hour shifts, observing one doctor on each side and a line of nearly 50 patients trailing from the corner of the table, out the door, and along the outside walls of Tribhuvan University Teaching Hospital in Kathmandu, Nepal. Patients didn’t care if others heard the details of their ailment; no complaints were heard about the broken fan or the absence of chairs. It was the Hippocratic Oath in the rawest sense.
After the second shift of patient treatment, the chief resident guided me through the hospital as he conducted his rounds. I wanted to become a physician before stepping foot into that hospital, but the three minutes it took to walk from the main lobby to the psychiatric ward destroyed those convictions and then rebuilt them stronger. Every inch of space outside was filled, the floor hardly visible. People collapsed to the floor, screamed with pain and literally dragged themselves listlessly through the hallways. Pregnant emaciated mothers struggled to keep track of the children with whom they were already overwhelmed. Other children, in need of a parent, just roamed from room to room, asking anyone in a white uniform to stop their pain. It was then that I met the woman that would open my eyes to a disease I had never given a second thought to: Alzheimer’s.
An elderly woman, bundled in colorful fabrics and decorated with ethnic jewelry, was led to our table by a man who looked both fragile but determined. His voice trembled as he spoke to us, and we learned of the two day journey they made in order to meet with a doctor. His mother would slowly interject, attempting to correct the details her son spoke, but with every word, he became increasingly frantic until he finally told us why they had come here. The mother had forgotten her son’s name, his wife’s name, their grandchild’s name. At the brink of tears, he told us that he felt she was slipping away from her life. After inquiring further about her behavior, the doctor attempted to calm his nerves by slowly explaining what it meant to have Alzheimer’s but the son refused to believe it. He repeatedly said that he had never heard of it before, but what impacted me more than any of his story was the last thing he said before leaving the desk: that it was unfair for her to build an entire life, and then have it snatched away. The perspective of someone who barely understood the disease was more powerful than that of any professor or doctor.
My first contact with an Alzheimer’s patient pushes me to now volunteer with organizations in Las Vegas, but also gives me the strong conviction to pursue Alzheimer’s research during my undergraduate years in college.
I am fortunate to have had a passion for medicine my whole life, starting with a childhood love of my PlaySkool stethoscope and evolving with the help of chemistry classes and summer medical camps. Practicing as a physician is simply my purpose to fulfill in life, and Alzheimer’s awareness has become a large part of that. It is rewarding to be able to get to a point where years of knowledge and practice allow me to actually sit in that chair, however crowded, and have something to contribute to any person that approaches me. I want to be the doctor that I shadowed, but furthermore, I want to create a healthy future for someone that did not think one was possible, and play a part in both spreading knowledge about Alzheimer’s so that no son will ever feel so betrayed by a foreign medical term. My ultimate hope is that I can be a part of a research effort so that I never have to tell another son of the unfairness his mother, father, sister or brother is experiencing.
People have told me that I am too young to be rushing into a career, that I don’t understand how demanding the profession is, that researching something so enigmatic is a task that will reap no rewards. After shadowing practices on opposite sides of the economic spectrum, I realize that this work will be stressful. It can tear me apart physically, mentally, and emotionally, but I believe it will be worth it. The effects I can have in such a hopeless place keep me from minding the harsh conditions; no feeling can reverse what I’ve seen, but the squalor and vulnerability prove to me the value of my efforts. No one can take away the words that son spoke to me that day, the words that symbolized both the need for knowledge and the need for results.
2008 AFA Teens