Fingers on the Keyboard, Heart on the Page
By Deborah Shouse
As my mother moved deeper into dementia, I treasured every moment of connection with her. Often it was only a minute or two, sitting shoulder to shoulder on the bench in the courtyard of the memory care unit, watching the community bunny rabbit nibble on grass. Leafing through a celebrity magazine and Mom pointing to George Clooney saying, “He’s good looking.” (Her first sentence in days—dare I tell my father?) Looking into her eyes and singing “Oh What a Beautiful Morning” and other songs from favorite musicals, I was always looking for new and creative ways to feel close to her.
After Mom died, my partner Ron’s parents each lived with dementia and we continued our quest for connection.
This quest was extremely meaningful for me and I wanted to write about the creative possibilities inherent in being a care partner for someone living with dementia. But I didn’t know how or where to start. The documentary film, Alive Inside, pointed the way. When I watched this powerful movie about music transforming the lives of those living with dementia, I instantly knew I wanted to write about this subject.
I contacted a national magazine and suggested an article. The editor asked, “How else are people communicating with those living with memory loss?” As I researched the question, I discovered a whole new world. Across the globe, writers, painters, musicians, gardeners, dancers, expressive therapists, and other innovators were using the arts, creativity, and imagination to tap into the spirit that thrives in those living with dementia. I was intrigued and I knew family and professional care partners would benefit from their ideas.
My final motivation came from a friend, who plaintively asked, “What are we going to do all day?” Her husband was living with dementia and their normal activities were becoming harder to do. She helped me understand that whatever I wrote about needed to be accessible, adaptable, intriguing and easy to implement, for friends and care partners, both family and professional.
For me, this book was a work of the heart. I had already written about my experiences with
my mother in Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. I knew the emotional healing, the joyous sense of connection, the widening of my heart, and the expansion of my thinking that came from sharing my stories with others.
Before I began writing, I asked various family and professional care partners, “What do you think of this idea: a book about staying connected through creativity and imagination?” They were excited by the hope and engagement the book promised. So I started reaching out, often cold calling visionaries in the field. Every person I approached was excited by the subject matter and each interview inspired me and enriched my book. After each conversation, I asked, “Who else should I talk to?” By following the flow of ideas, I talked to dozens of creative experts in all areas of the world, collecting their ground-breaking ideas, and translating them into easy, meaningful activities both partners could do together.
This writing project is now complete and I am still following the flow as I seek ways to share and market the book. The cascade of ideas opens my mind and heart and reminds me to live in curiosity and wonder, a great state of mind for a writer.
Deborah Shouse is a writer, speaker, editor and dementia advocate. Deborah’s newest book, Connecting in the Land of Dementia: Creative Activities to Explore Together, features dozens of experts in the field of creativity and dementia. These innovators share ideas that engage the creative spirit so care partners and people living with dementia can continue to experience meaningful moments of connecting. Deborah and her partner Ron Zoglin raised more than $80,000 for Alzheimer’s programs by donating all proceeds from her initially self-published book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, to dementia-based non-profits. Central Recovery Press has since published an updated version of Love in the Land. To learn more about Deborah and her work, visit DementiaJourney.org