There are few, if any, people in today’s world who will remain untouched by Alzheimer’s disease or dementia in some form, whether caregiver, relative or someone personally affected by the disease. As baby boomers continue to age, the number of those diagnosed is predicted to increase each year. Half of all people over the age of 85 are said to have some form of dementia.
In 2003, my 84-year-old mother was diagnosed with moderate Alzheimer’s disease. After hearing this diagnosis, I wanted to find out all I could about what her future held. After speaking with her health care provider and hearing the medical explanation, I turned to the local Alzheimer’s Association in an attempt to learn even more. I borrowed videos to view and pamphlets to study. I learned my mother had been diagnosed with a grim disease which had no cure and that there was no way to slow its progression.
Curious to read about how others navigated this disease, I next began to search for books written by someone who’d accompanied a loved one on the journey. I hoped to read a story written by someone like myself, a daughter perhaps, who’d become the primary caregiver, not a medical textbook written by professionals. I wanted to learn what to expect on an emotional level, from the caregiver’s point of view. I scoured the bookshelves, looking for any ideas on how best to communicate with my ever-increasingly distant and silent parents (my father had Parkinson’s-related dementia) and ways to enrich lives that were slowly and unceasingly shrinking with each passing month. Sadly, there were few books available during that time to shine a light on our difficult journey.
Eventually, I decided to write the book I wished I might have read during that time. Happily, I wasn’t alone in this endeavor. Today, I’m pleased to note there are now many books available sharing stories of dementia, adding perspectives, lessons, tips and ways to cope. These books offer a hand up, comforting those of us who are in the midst of it, helping us to realize we aren’t alone. Author Shannon Wiersbitzky has compiled and shared a list of 12 such books for all age groups, which are listed below.
Ages 4-8 – Picture books
What’s Happening to Grandpa? Maria Shriver …Kate loves her Grandpa’s stories but when he begins repeating them and forgets Kate’s name, she knows something is wrong. As a way to cope, she creates a special photo album of their times together.
Forget Me Not, Nancy Van Laan …When Julia’s Grandmother begins to forget things and even get lost in her own neighborhood, the whole family knows something is wrong. Eventually they need to move Grandmother out of her home, a place filled with memories, into a place where she’ll be safer.
Ages 9-13 – Middle-grade novels
What Flowers Remember, Shannon Wiersbitzky …In the small town of Tucker’s Ferry, West Virginia, Delia and Old Red Clancy are friends and business partners. When he is diagnosed with Alzheimer’s, Delia takes it upon herself to save as many of his memories as she can, and she convinces the whole town to help.
The Graduation of Jake Moon, Barbara Park …Jake Moon and his grandfather, Skelly, are close. Until Skelly is diagnosed with Alzheimer’s. Now the roles are switched. It’s as if Skelly is the kid and Jake is the adult. Much of Skelly’s care falls to Jake, which doesn’t leave much time for being a kid.
Ages 12-18 – Young Adult novels
Curveball, Jordan Sonnenblick …Peter Friedman used to be a star baseball pitcher. In the year following an elbow injury, his grandfather is diagnosed with Alzheimer’s. The only bright spot is his new girlfriend and his grandfather’s photography equipment.
Pop, Gordon Korman …Marcus strikes up a friendship with Charlie Popovich, a former pro football player. As the two become closer, Marcus learns that Charlie has early onset Alzheimer’s as a result of head injuries suffered during his career.
Tending Roses, Lisa Wingate …Kate Bowman and her family travel to Missouri with the intent of moving Kate’s increasingly frail and forgetful grandmother to a nursing home. Struggling to find her way, Kate finds her grandmother’s journal and is forced to reexamine her own priorities in life.
Blue Hydrangeas, an Alzheimer’s Love Story, Marianne Sciucco …Jack and Sara own a New England bed and breakfast. When Sara is stricken with Alzheimer’s, everyone suggests a care facility. Unable to bear the thought of life without her, Jack makes an impossible promise. They will stay together no matter what the disease brings.
An Absent Mind, Eric Rill …Saul is a man used to being in control. Then he is diagnosed with Alzheimer’s. Saul and his family know how it has to end, because no one has ever outsmarted Alzheimer’s. But as they journey the unfamiliar path of the disease, they leave behind their once disconnected lives and come together to weather their difficult journey.
On Pluto: Inside the Mind of Alzheimer’s, Greg O’Brien …OnPluto is a book about living with Alzheimer’s, not dying with it. Acting on long-term memory and skill coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey.
Alzheimer’s Daughter, Jean Lee …With wincing honesty, Jean Lee chronicles the journey of understanding and accepting the memory loss of her parents, both of whom were diagnosed with Alzheimer’s on the same day. The story spans nearly a decade of caregiving, documenting frustration, sorrow, love, and ultimately acceptance.
Somebody Stole My Iron: A Family Memoir of Dementia, Vicki Tapia …Vicki’s mother was diagnosed with Alzheimer’s, followed shortly by a diagnosis of Parkinson’s related dementia for her father. Detailing the daily challenges, turbulent emotions, and painful decisions in caring for her parents, Tapia provides lessons learned for anyone facing Alzheimer’s with their own loved ones.