When Cape Cod resident Kate Whouley's new book, Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia (Beacon Press, $24.95, 9780807003190), was published earlier this month, there was no question about where to hold the launch party: Titcomb's Bookshop in East Sandwich, Mass. The memoir's opening scene takes place in the store.
The inaugural bash for Whouley's first memoir, Cottage for Sale, Must Be Moved, was hosted at Titcomb's in 2004, and is described in Remembering the Music, Forgetting the Words. "Looking back, that was when I started to know something wasn't quite right with my mom and began to question it," said Whouley. "But I was still in enough denial that I didn't know anything for sure. That's the last moment where I feel like we were both happy, and we didn't know what was going to happen."
What came next was the discovery that Whouley's mother, Anne, a sassy, strong-willed former English teacher, was suffering from Alzheimer's disease. In Remembering the Music, Forgetting the Words--a September Indie Next pick--Whouley writes with honesty and humor about the experience of being her mother's sole caregiver. She recalls what she learned during the difficult, heart-wrenching journey ("memory is overrated," for one thing) and shares how her long-complicated relationship with her mother was healed in an unexpected way. (See several videos here.)
The main thing Whouley would like readers to know about Remembering the Music, Forgetting the Words is that it's not a depressing book and touches on much more than the effects of Alzheimer's. "It's about life and the passages we go through," said Whouley. "I don't want people to be afraid to pick it up. There are a lot of fun moments and lightness in the book."
This particular story might not have come about if Whouley hadn't fallen prey to "an irritable muse." She had been working on a narrative about music and the colorful members of the Cape Cod Conservatory Concert Band, for which she plays principal flute. "My mom kept turning up on every page whenever I started writing about music and my relationship to music," Whouley recalled. "I realized the book needed to be more about her." She scrapped the proposal and sample chapters she had already submitted to her agent and started again from scratch.
As a child, Whouley took up playing a wind instrument after a doctor suggested it would improve her asthma by helping to regulate breathing and increase her lung capacity. She asked for a clarinet. Her mother chose a flute for her instead, deeming it prettier. "My mother selected the flute for me for all the wrong reasons, but I cannot deny she made the right choice," wrote Whouley in Remembering the Music, Forgetting the Words.
Decades later, as Anne slipped further into dementia, memories and words fading, music was a touchstone for her. "Every time I saw her the one question she would consistently ask me is, 'When is your next concert?'" said Whouley. "In the Alzheimer's mind, there's a lot of fear and confusion and scrambling to figure out what it is they're supposed to do or say next. When they're allowed to sit for a couple of hours and listen to music, their brain can rest. I think the music, on so many levels, gave her a break from struggling with the words she had forgotten."
Along with being a writer and a musician, Whouley is the owner of Books in Common, a consulting firm specializing in the retail book business. She volunteers with the Alzheimer's Services of Cape Cod & the Islands as a facilitator for their Arts & Alzheimer's initiative. Monthly art discussions take place at museums and galleries across Cape Cod especially for Alzheimer's patients and their caregivers.
When Whouley heard about the program, which recently expanded to include music, she was inspired to take part because she knew it was something her mother, who passed away in 2007, would have enjoyed. She also was looking to help others through the tough times that come after an Alzheimer's diagnosis.
"I didn't start out with any kind of grace in this," Whouley said. "I struggled for a long time until I started to understand things and realize I didn't have to get caught up with who my mom used to be or who I was to her and could let go of some of those emotions. It just became enjoyable to be there with her. I felt if I could help someone through the harder lessons I learned during the journey with my mom, it could do some good. That's part of the book, too."
Whouley will be at the New England Independent Booksellers Association fall conference in Providence, R.I., on October 13, and at the Miami Book Fair International in November. In addition, she'll be appearing at bookstores from coast to coast to promote Remembering the Music, Forgetting the Words. Said Whouley, "I hope people read the book and feel it's not a poor me story but an affirmation of life." --Shannon McKenna Schmidt