Lessons from my grandfather's battle with dementia that inspired debut novel
For as long as I can remember, I've been haunted by what hasn't felt fair. A solid enneagram 1, I've always been hyper-fixated on things feeling "right" or "just." When I was in my mid-20s, the thing in my life that felt completely unjust was my grandfather John's battle with dementia.
I grew up adoring my grandfather, who loved to dote and spoil. For better or worse, he was a man who valued appearances, always wanting to dine out at fancy steakhouses with menus far out of my family's usual price range.
He'd take me to record stores and tell me to pick out anything I wanted. And while I once tested that by selecting a CD with a half-naked Shakira on the cover, he always stayed true to his word.
Living states apart, Thanksgiving tended to be the holiday we spent together.
Apart from his requirement of having sweet potato pie on the table each year, he was never picky, raving over any dish my mother or grandmother prepared with flowery praise that always made them laugh and shake their heads.
That was just "Big John." He dished out compliments like currency, and he never met a stranger. He loved walking into businesses and restaurants and introducing me to the entire staff, being the man everyone knew.
But when my grandfather began exhibiting signs of dementia in his early 80s, everything began to change. He became forgetful, unable to recall basic instructions for taking his daily pills.
His attitude and demeanor toward my father, his only living child, became negative and aggressive, with anger coming on faster and more naturally than it ever had before.
Eventually, he and my grandmother – his beloved wife of 73 years – had to be moved into an assisted living facility in Memphis, Tennessee. My dad, their primary advocate, found himself regularly commuting between his home in Virginia and their home in Tennessee, fielding daily calls regarding their care, setbacks, and struggles.
In 2016, I moved to London, a move I found to be incredibly isolating. Every day I finished work at 2 p.m. and found myself alone and homesick, with most of my friends and family unavailable to talk.
Everyone, that is, except my grandfather. My dad had relocated him to Virginia shortly after the death of my grandmother and Big John was more confused than ever and alone for the first time since his teenage years.
Our daily calls could be perfectly normal, featuring some of my grandfather's favorite stories or they could be filled with repeated questions, confusion over the whereabouts of his dead wife, or surprise when I mentioned the dog I'd had for four years.
He ended every call with the question, "Do you know how much I love you?"
One day I'd been struggling with my own isolation, so I called the one person I'd come to rely on in those challenging months.
But instead of being met with my grandfather's signature affection and sympathy, he was agitated and hostile, saying some of the nastiest things he'd ever said to me; things he never would have said had his mind not been taken over by this disease.
I got off the phone in tears, overwhelmed by how unfair it all was – unfair he was sick, unfair he was alone, unfair that this once great man had been reduced to this meager existence.
I hated the idea of going through life, building a family, a career, relationships, with this as a "reward." Mostly, I longed to go back to my own childhood before the harsh realities of life became clear.
Without really understanding what was happening, I found myself beginning to write.
I wrote about a little girl I named Gracie, who was 6 years old. She adored her grandfather. Her mother, LeeAnn, had told her that there was a "worm" in his brain as a way to explain her grandfather's dementia and sundown syndrome, saying that at night the worm woke up and made him confused but during the day, the worm stayed asleep.
While I felt helpless an ocean away, Gracie broke her grandfather out of his nursing home, and the two went on an adventure together to "chase the sun."
It was the fictional fantasy of what I wished could be true. In young Gracie's innocent mind, a cognitive disease was simply a problem to be solved, and she had no doubt that she would.
The concept of hopelessness was not one she could understand or accept. After an hour of writing, I finished my six-page short story with the line, "At least that's how I wish it had happened."
That short story eventually became my debut novel, "Sun Seekers," released in January.
While I lived out my escape through Gracie's eyes, I also fleshed out the points of view of her jaded, single mother, LeeAnn, and her estranged father, Dan, showing how dementia and grief impacted their complicated dynamics.
In LeeAnn, I wanted to portray what it was like to be a caregiver and advocate for an estranged parent as her relationship with her own father was filled with past hurts that Gracie didn't have. But above all, I wanted to write a celebration of life and love.
The book was filled with hard truths, but I made it my mission to share them in a way that read like a love letter to my grandfather and caregivers everywhere.
I wanted his memory to live on, to show that even as the man I knew began to disappear, I could honor him. With caregivers all over the country and around the world dealing with these daily frustrations and heartbreaks, I wanted to write a story that made them feel seen.
When my grandfather was going through his struggle, none of my close friends had experienced similar situations. Unfortunately, those who haven't already been impacted by dementia, Alzheimer's or another disease that robs a person of their light, likely will be in their lifetime.
According to the Alzheimer's Association, an estimated 6.9 million Americans over the age of 65 currently have Alzheimer's Disease. That's a 200,000 increase in the past year.
In sharing my grandfather's story, albeit a fictionalized version, I've found a community of readers who have relayed stories of their own loved ones – their trials, their agonies, and their victories. Their names live on as long as we have stories to share, and there has been such a comfort in continuing my own grandfather's story in bringing this novel into the world.
In early 2017, Big John died at the age of 89. He had battled dementia for eight years prior to his death. Two months before he died, I came home for a visit.
Though I had told almost no one about the novel, I plucked up the courage to tell him that I was writing a book about him.
He grinned, always wanting to have seen his own name in print, and told me how proud he was of me. When I got my book deal for this story after years of hard work and determination, the first thing I did was write the dedication page.
For my marvelous grandfather, John Dozier: Yes, I know how much you loved me.
Rachel McRady is an Emmy Award-winning journalist for Entertainment Tonight. She's had pieces published in The Washington Post, Time, Motherly, Parade, Us Weekly, Teen Vogue, Yahoo Life, and more. "Sun Seekers" is her debut novel. She currently lives in Richmond, Virginia, with her husband, Caleb, their daughters Iona and Isla, and their dog, Skye Slurpee.
