Deborah Shouse and Ron Zoglin understand commitment. They have been committed to each other as partners and companions. They have been committed to understanding the needed love and compassion required in accepting and loving parents through dementia. They dedicated themselves to the task of self-publishing the book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, transforming those stories into storytelling moments and then coming full circle in receiving the good news that a national publisher wants to invest.
Shouse is a writer, speaker, editor and creativity catalyst along with Zoglin. She has written several memoirs including Still Following Her Star and The St. Joe Kid. Zoglin is a writer, professional storyteller and owner of Brookside Antiques and Appraisers.
Central Recovery Press has taken on the book and the two will celebrate the relaunch Nov. 10 with a 1:30 reception and a 2 p.m. performance in the Truman Forum at the Plaza Library. Shouse has updated the book with additional stories, resources and practical tips.
Their presentation offers listeners insights into the caregiver’s emotional and spiritual journey. Throughout her mother’s Alzheimer’s, Shouse practiced finding the joys in each interaction, explored creative ways to connect with her mom, and developed new rituals to anchor holidays and celebrations. Love in the Land of Dementia offers humor and hope to family members, friends, and caregivers.
The timing is fitting as November marks National Alzheimer’s Disease Awareness Month and National Caregiver Month. Statistically, there are more than 15 million caregivers.
“Our message focuses on finding the blessings and the connections with our loved ones who have Alzheimer’s and to supporting each other as caregivers,” Shouse says.
Part of their joy comes from sharing the stories here and abroad. Even when the cultures are different, there are still fundamental similarities in the caregiver’s journey through Alzheimer’s.
At a performance in Istanbul, one of the audience members told them, “Your story is my story.”
After a performance on Long Island, a woman came up and said that she had forgotten how much she loved her husband until she heard their stories. Shouse and Zoglin have performed in 11 countries as diverse as the island of Saint Maarten in the Caribbean to the country of New Zealand.
“We talk about emotional, physical and spiritual ways to take care of ourselves and those who have Alzheimer’s,” Shouse says. “We share the journey and make everything as meaningful as possible.”
Zoglin stands alongside Shouse and supports her as she shares even more now with an active blog. “The story, the listeners and the storyteller become one,” he says. “We sense that and treasure what it takes to make that moment. As writers, we can be insulated, but when we go out to perform, we take that leap of faith that we will connect. And, so far, so good.”
Zoglin helped his father as he went through dementia. “Going through the experience with Deborah and her mom helped me tremendously on the journey with my dad,” he says.
Shouse’s book shares the stories of her mother’s disease process, her father’s strength and the family’s resolve to celebrate life for as long as it was possible. During this period, Shouse and Zoglin also created the HERO Project, which invites creativity and communication between, people with Alzheimer’s, their families, caregivers and others, by using simple storytelling and scrapbooking techniques.
With the original self-publishing, Love in the Land of Dementia also offered a way to raise money for Alzheimer’s. Proceeds of $80,000 went to a variety of Alzheimer’s-related organizations, supporting programs and research. Now the work with Central Recovery Press gives the two even more exposure. Shouse recently attended the American Library Association Conference and is contributing to a variety of caregiver-oriented radio programs and guest blogs. Once again, she will donate a portion of the book’s proceeds to Alzheimer’s causes.
Zoglin says that while a cure has yet to be discovered, the comfort and connectedness is critical. “No one has to be the Lone Ranger in this. If there is a chance to share the message, we will. That is why November 10 is so important. We want to sign books, answer questions and share the resources of the Heart of America Alzheimer’s chapter.” They will then take a few days to travel around Kansas and share the stories.
“Even though the stories are specific to my family, they resonate because they speak to the universal experience of caregivers,” Shouse says. “The person you love is changing; how do you notice what is good about that? Initially it’s a hard journey. Then the humor and hope return and you discover new ways of communicating and connecting that can lead to an even deeper relationship.” The journey is far from over as Shouse and Zoglin continue offering up their stories, but Zoglin does his best to sum up the moment. “The trick in life is to be grateful every day.”•
