Carrie Jane Knowles’ newly updated memoir chronicles a family’s experience with Alzheimer’s disease
“Last night I dreamt my mother knew my name,” begins Carrie Jane Knowles, an award-winning author and artist from Raleigh, in her recently updated memoir, “The Last Childhood: A Family Story of Alzheimer’s.”
Completed with a grant from the North Carolina Arts Council, the book is an unflinching look at Knowles’ family’s experience with her mother’s disease—what the family got right and what it missed—and advice for others facing a loved one’s cognitive decline. It’s about the weight of the ordeal, its impact on relationships and the sense of self, and the relief, grief and search for meaning at the end of it all.
November is National Alzheimer’s Disease Awareness month. An estimated 5.7 million Americans live with this disease, which destroys long- and short-term memory and other mental functions. In the U.S., someone is diagnosed with Alzheimer’s every 65 seconds, according to the Alzheimer’s Association; this pace will double by mid-century as the country’s population ages. There is no cure for this disease of erasure, and researchers do not fully understand its cause. But, in the face of this uncertainty, Knowles believes we should all strive to live a life of purpose.
“Make your mark in some way, whether it’s writing or art or making the best apple pie,” she says. “You don’t have to write best-sellers to be remembered. You can just make really good fudge or a great pot roast…anything that you love to do.”
Knowles has certainly made her mark on Raleigh since she moved here from Chicago in 1978. Though writing often can be a solitary endeavor, Knowles has become deeply intertwined with the creative community here. She helped shape the city’s art scene, serving on the boards of the Symphony Orchestra Development Association, Carolina Wren Press, Raleigh Chamber Music Guild, Burning Coal Theatre and the American Forum. She worked as a restaurant reviewer for the News and Observer and served as a judge for the Raleigh Fine Arts Society’s Annual Fiction Contest for eight years. She also founded the Boylan Heights Art Walk, the annual celebration where local artists and artisans showcase their work on the front porches and in the yards of the neighborhood’s historic homes. The Art Walk is now in its 25th year.
“Artists and writers have always served as scribes for humanity,” writes Knowles in a recent article for Psychology Today. “They put down in lines and colors, words and songs, the things they see and feel. When we write a story, draw a picture, play music, sing a song, dance, or throw a pot, we engage in an act of memory. We want to remember. We need to remember…In some very fundamental way we understand that if our memories are lost, we are lost.”
Knowles has spent much of her life making memories—and writing them down. Her first job was writing for the PR department of WXYZ radio during her freshman year at Wayne State University in Detroit. During her last two years of college, Knowles spent her weekends traveling around the state, covering speedboat, motorcycle and drag car races for a sports magazine. She wrote for an alumni magazine in Chicago and then, with a hearty dose of self confidence, took a leap of faith and dove into freelance writing.
Named Piedmont Laureate in 2014, Knowles has spent a decade traveling around the country speaking about Alzheimer’s disease. She has written hundreds of newspaper and magazine articles, dozens of short stories—many of them award-winning—and three well-reviewed novels. She is currently working on a new book inspired in part by a family mystery and will publish a collection of short fiction pieces this April. Knowles has been invited to be a reviewer for the New York Journal of Books and pens a regular column for Psychology Today called “Shifting Forward: A Wanderer’s Musings.”
Knowles takes her career as storyteller seriously, commuting daily to work in her sacred space—an airy and open office in a renovated house on the edge of downtown, a liminal place between modern buildings and a historic cemetery. For her, the notion of place is central to her writing, as much a character as the people in her novels.
“Place is more than an address—it’s a culture, a feeling, a taste,” Knowles says. “Place really matters to me and to most writers, because it sets up a tone and what happens in a story. Think about ‘To Kill a Mockingbird;’ if it was set in Boston, it wouldn’t have been the same story.”
Knowles owns dozens of maps and a passport she describes as “the size of a library.” Her book, “A Garden Wall in Provence,” is set in Avignon, France, where she lived for a year when her children were small; “Lillian’s Garden” takes place in a mental hospital on the fringe of her hometown of Wayne, Michigan; “Ashoan’s Rug” is inspired by places she has visited and people she has met in her far-flung travels. Through her books, her readers travel, too, to places they may never visit, through lives unlike their own; or, in the case of “The Last Childhood,” through a tale familiar to so many, but rarely told.
“It is our job now to make memories for ourselves and our children that will last a lifetime: ones that, if they are lost, can be found again,” Knowles writes at the end of her memoir.
It’s a reminder as we enter the holiday season to make our mark on the world—and in the lives of our loved ones before it’s too late.