Alzheimer’s disease is the uninvited guest that crashes all of my family gatherings. It relentlessly pursues my grandfather’s brain, unraveling more threads from the tapestry of his memory each year. Although it causes him no physical pain, it sows guilt, sorrow, frustration, and a sense of deep loss in all of us.
Like all diseases, this one seems entirely unfair. My grandfather was a sharp attorney, a witty, silly champion of Trivial Pursuit. He hugged everyone. When I was young I thought he knew everyone in the world. He would open his arms wide to greet restaurant hosts, new acquaintances, and complete strangers. Sometimes those on the receiving end gave quizzical or startled looks, but my grandfather always had a joke ready so that the looks dissolved to laughs. I figured they were all long lost friends, reunited at last.
My grandpa loved to take me out for ice cream. He always urged two scoops with toppings and would get the same for himself. He chaperoned one of my school field trips and pulled quarters out of everyone’s ears, to the delight of the first grade class. He always told me that he was proud of my grades in school, that education is the most important gift. He taught me how to drive on the dirt roads behind my cousins’ house.
It was all of his children who gently told him he could no longer have his car keys. They feared he would get lost or in an accident, and explained this to him with careful word choice. As difficult as it was for them to initiate the conversation, I cannot imagine how it felt for my grandfather. The kids he raised from diapers and scolded for breaking curfew were now revoking his privileges. He had not only lost his freedom, but also his authority.
While the disease feels all too personal, an uninvited guest in my world, the impact of Alzheimer’s is much further reaching. The National Institutes of Health estimate that over five million Americans suffer from Alzheimer’s. Out of these centralities, the disease ripples out to affect millions more family members and close friends. My experience of loving someone with Alzheimer’s is shared by countless.
Alzheimer’s is an unusual condition because individuals die with the disease, not from it. Although its initiating cause is still a mystery, some genes have been located that correlate strongly with an early onset form. Yet there are many factors that determine whether or not a person will experience symptoms. While it is the most common cause of dementia in older individuals, diagnosis is rarely certain, as there is no definitive test. For a condition that plagues our society so thoroughly, we have few answers to the questions of how or why.
It is emotionally disheartening, but it is also terrifying conceptually. If our memories, the sum of our accumulated experiences, disappear, then what are we left with? In witnessing Alzheimer’s steady erosion, one must grapple with the idea that physical changes can alter one’s sense of self. Watching a loved one struggle to find details they once knew so well is both painful and haunting, yet knowing it will only get worse brings an even deeper sense of loss.
I saw my grandfather just over a month ago. He entered the room with a huge smile on his face, hugging everyone in sight. With little difficulty, he pulled a chair up next to mine and excitedly asked, “What is new? You’re a senior in high school now, right?”
“I’m in medical school, grandpa,” I reminded him. He looked taken aback, surprised, and concerned that he had forgotten such a gap. A wave of bashfulness crossed his face, but before long his smile emerged again. “Nattie, I’m proud of you,” my grandfather managed, gripping my hand in his. Whether he remembered or not, his teachings and values had stayed with me.
As my grandfather battles Alzheimer’s disease with as much grace as he can muster, I am encouraged to continue learning and fighting alongside. Perhaps more significantly, I am motivated to share how the illness feels from my perspective. We are all touched by disease. For some, not a moment can go by without the nagging reminder of pain. For others, illness disturbs sporadically and peripherally. Yet we all know how it feels to be affected by medical suffering. If we can collectively stand up to disease, it will be far easier and more productive than silently grieving alone.
Natalie Wilcox is a medical student who blogs at The Doctor Blog.
