Every year, my garden goes purple to recognize June as Alzheimer’s & Brain Awareness Month, and to pay tribute to my grandfather, who was diagnosed with and succumbed to Pick’s Disease in the mid 90s.
Back then, I was a teenager myself and my life was alarmingly simple. I went to school, played on a few athletic teams, and lived on a nice, suburban street. My life was about as generic as any teenage life could ever be. Then we started noticing changes in my grandfather. Little things. Like, he’d forget to send birthday cards which he’d been known to send early, or he’d lose his keys or forget an appointment. Then it seemed like we went to sleep one night and woke up the next morning and my grandfather was this completely different person; one who needed assistance just to get through the daily tasks of living. That assistance came in the form of my father, a man who worked full time and dedicated every other waking second to keeping my grandfather out of a nursing home. He did a good job of masking the toll it was taking on him, but he could never hide it from me. And although I never said it to him, I couldn’t get past the thought: what if it had been me? What would I have done if my father hadn’t been around to absorb the family responsibility before it ever spread in my direction? How would I have responded? Would I have survived?
The concept for my debut young adult novel, NO SAD SONGS (FOW Books, 2018), began to brew up inside me since I experienced what it may feel like to be a youth caregiver and I observed the toll Alzheimer’s and dementia takes, not only on the diagnosed individual but also on the primary caregivers and surrounding family members. My protagonist, Gabe LoScuda, was born directly out of these observations, experiences, and primary questions. His story was a way for me to explore the same puzzling thoughts many of us have when our loved ones begin to become unrecognizable to us.
The book also brought me into contact with youth caregivers and primary caregivers all over the world, including with the collection of global authors and researchers who make up the ALZ AUTHORS GROUP, an organization dedicated to providing a library of curated resources that are field tested by folks who may be engaged in the same battle as you or someone you know.
My grandfather battled Alzheimer’s for eight long years. That’s not an insignificant amount of time in anyone’s life. What it meant for me was that I watched my grandfather deteriorate for about twenty-five percent of my life. There’s a real sense of helplessness and loss that pushes down on you when you watch a slow deterioration like that. At the same time, there’s an overpowering weight of responsibility that drives most caregivers to keep pushing on no matter the price.
The Alzheimer’s Association estimates almost a quarter of a million people will be diagnosed with Alzheimer’s or another form of dementia in the next year alone. Currently, more than five million people are living with Alzheimer’s and, by 2050, this number could grow to over sixteen million. Alzheimer’s disease is actually the sixth-leading cause of death in the United States. But it’s the only cause of death among the top ten in the United States that cannot be prevented, cured or even slowed. In fact, one out of every three seniors dies with some form Alzheimer’s or dementia.
What many fail to recognize is how their family members (the caretakers) may also have their lives derailed by the disease. Right now, more than fifteen million Americans provide unpaid care for people with Alzheimer’s or other dementias.
It was my hope then and it continues to be my hope right now, that young readers will finish NO SAD SONGS with a new respect for what it takes to be a caregiver, and an understanding of how intertwined these duties become in the lives of people fighting on the front lines of a growing health dilemma that is rapidly approaching epidemic levels. And I want them to be inspired to become champions in the fight against this terrible disease so that future generations will never have to watch their loved ones disappear right before their eyes.
If you are able, I hope you’ll consider making a contribution to the Alzheimer’s Association in recognition of Alzheimer’s and Brain Awareness Month, or purchasing a resource from the AlzAuthors curated library.