It’s a club that no one wants to be a part of. Ever since my debut novel, Sun Seekers, was released in America in January, I’ve had readers approach me to share their own stories of how dementia and Alzheimer’s have impacted their families.
Caregivers, nursing home employees, medical professionals, and more all want to open up about the impact these diseases have on their families and their lives. Loving and caring for someone with dementia, Alzheimer’s, or any disease that affects
memory can be such an isolating experience. It certainly was for me. In 2016, I was an American expat living in London where I didn’t know anyone except for my husband. An extrovert without a social circle, I would make daily phone calls to my grandfather in his nursing home back in Virginia, an entirely different Richmond from the one I was living in.
He had been battling dementia for eight years, with some days better than others. He always remembered me, but often would repeat the same questions, seem surprised when I mentioned the dog I had for four years, or wonder where his wife, who had died several years prior was. One day, I was struggling with my loneliness and worry that I’d made the wrong decision in moving abroad, so I picked up the phone to call my grandfather. Unfortunately, I caught him on the wrong day, his dementia bringing out an angry side to his personality that I was not familiar with. His words cut through me, shattering my self-confidence and breaking my heart.
But more so than the hurt those words inflicted, I was overwhelmed by a strong sense of just how unfair it all was. I hated that this man I’d known all my life, who dominated any room he entered, and whose heart was the biggest I’d known could be reduced to this sad existence. He was alone, confused, and depressed, without a reason to go on. How could this be the finish line to a life that had once been so full?
I got off the phone sobbing, both from what he had said and also in my anger toward the disease that had robbed me of the man I’d known. I felt heartsick and hopeless, desperately wishing for simpler days. I was suddenly struck with the image of myself as a little girl, standing out in the sun and holding my grandfather’s hand. He wasn’t sick, and he wasn’t in a nursing home. He was my protector, and we were off on an adventure together. Without really knowing what I was doing, I began to write. Over the course of an hour, I wrote out a six-page short story about a little girl named Gracie who breaks her grandfather out of his nursing home in an attempt to save him. Her mother has told her that her grandfather has a “worm in his brain,” a metaphor she’s used to explain his dementia and sundown syndrome. She’s told her that when the sun goes down the worm wakes up, but when the sun is out the worm stays asleep, so Gracie decides that they must chase the sun and go on this grand adventure together. My final line read, “At least that’s how I wish it had happened.”
When I was finished, I wasn’t entirely sure what I’d done. It had felt good, cathartic to get it out onto the page, to live in Gracie’s young, innocent mind that hadn’t gotten jaded by life’s realities. It felt like I had done something meaningful, but I couldn’t
quite tell what. After some calls to my mother and an author friend, I realized that this was a rough outline to a book that I wanted to write. That book later became Sun Seekers. I spent the next six months drafting this story, fleshing out the characters, and adding in different perspectives. I wrote draft, after draft, after draft in cafes and pubs. I began putting my time in isolation to good use while also falling in love with the city I’d moved to.
That year, I came home for Christmas, frequently stopping by my grandfather’s home for visits. He would recite poems to me and ask me about my travels. Writing had been mostly a solitary, private act, one I rarely spoke about. But that Christmas, I
plucked up the courage to tell him that I was writing a book about him and that I planned to dedicate it to him one day. His face broke into a wide grin as he replied, “Well isn’t that something?”
I’ll always be grateful that I told him that. Something inside me urged me to do it, and I’m so glad that I did. Two months later in February 2017, he died at the age of 89. His death only made me more eager to share my grandfather’s story – not a biography, but the essence of who he was. And through this novel, I wanted to cement what our grandparent-grandchild relationship had meant to me, to show all the ways I wanted to help him and couldn’t. Writing through Gracie’s eyes made a dark situation feel light. She didn’t feel hopelessness, couldn’t even fathom the concept of hopelessness. Her grandfather’s illness was merely a problem she had yet to solve.
Writing this disease through her eyes and even the eyes of the other adult characters who came to it with the same jaded pessimism I had in real life, proved to be a therapeutic exercise for me. All of my characters were significantly flawed, as all
human beings are, with their own baggage and traumas, but at their core, they all wanted to be loved and to love in return. Through the character of LeeAnn, Gracie’s single mother, I explored what being an advocate to an estranged parent might look like. Being the person in charge of someone’s health and wellbeing when your feelings toward them might be complicated at best. My adult characters were also battling grief and loss, all in their own unique ways. I wanted to paint a picture of an entire family unit, to show how the dementia could affect all of them and to also give them all a second
chance at doing a better job. I wanted to explore the different perspectives of grandparent-grandchild relationships and child to parent relationships. While Gracie was enamored with her grandfather’s tall tales, LeeAnn was irritated by them – having spent her whole life as her father’s audience member when she wanted to be an active participant.
Mostly I wanted this novel to offer an alternative to caregivers and loved ones of those battling dementia – a realistic escape from the struggles of the day to day that doesn’t sugar coat a painful situation but rather acknowledges the pain and finds
different ways to look at it.
Sun Seekers (US edition) came out in January, and honestly, I had no idea what to expect. I felt a bit apprehensive knowing how much of a personal story this was to me, but the response has been overwhelming. To hear from caregivers, advocates, loved ones affected by dementia, Alzheimer’s, Parkinson’s and more, about how this story has touched them has been one of my greatest honors. I’ve talked to people who have felt that their loved ones’ stories weren’t represented in the more depressing pieces of fiction out there surrounding these conditions, and who with this story, felt that had changed. Above all, I got to remember my grandfather, honor his memory and share my experiences with him to crowds of people and the readers of my book.
This story and the act of putting it out into the world has been a gift both to me and to others who have read it. And I hope to reach as many people as possible who might relate to the feeling of losing someone before they’re even gone and the
complicated ways we can all love each other. Mostly, I hope it brings light to UK readers during a difficult time, the way it did for me.
Sun Seekers will be published in the UK on 28th May,