By Nancy Poland
Dancing with Lewy is a memoir about my dad, Lee, a World War II Veteran, business owner, artist, and fiercely independent man who was diagnosed with Lewy Body dementia. Told in two parts and featuring original poetry by my dad, I wrote of his young life growing up in the Depression era and enlisting in the U.S. Navy. He built a life with our mom in post-war America and was truly part of the Greatest Generation. I wrote about what it was like growing up with him as a dad, and the toll dementia took on our family. We danced our own father-daughter dance, sometimes in harmony, sometimes out of step, made more difficult with the progression of Lewy Body dementia.
When Dad resolved to remain independent despite his diagnosis, I found myself needing to take the helm in administrative and financial matters, and to be there for him as his mind declined. Dealing with our dad’s many losses was an ongoing challenge as he lost his house of fifty years, his work, his wife (our mom, who died of cancer), and ultimately his ability to walk, feed himself, or take care of his daily needs.
Authoring this book was at times difficult as it was hard to relive the painful times. I struggled with how much to reveal about our family, and what to keep private. But it was also a revelation. I learned so much about my dad and myself through research and putting our story into writing.
Primarily, I want caregivers to know they are not alone as many of us have walked this path. There are resources available to support their loved ones and themselves as a caregiver. I also want people to know how faith in God carried our family through the storm, offering grace during the days of weariness.
In Dancing with Lewy you will get to know Dad as a real person. He had his good traits and his faults, like any of us. People with dementia have a whole history behind them, and they still have personhood, emotions, and awareness of their surroundings. I hope this book opens the eyes of people, helping to end the stigma of disability by reminding us to treat people in any stage of a brain disease with respect and dignity.
The second part of the book offers reflections and helpful tips for caregivers. These include getting legal paperwork and other documents in order, creating a safe environment, and visiting alternative living facilities before a crisis requires a move. I also encourage caregivers to take care of their physical and mental health.
There is so much education needed in this area. As a caregiver I made mistakes, and my dad and I stepped on each other’s toes as we “danced” through dementia. My hope is Dancing with Lewy will remind us we need to be compassionate and full of grace, to others, and to ourselves.
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About the Author
Nancy Poland is a humorous, practical, and thoughtful author, speaker, and trainer, focused on caregiving. As a volunteer educator for the Alzheimer’s Association, she brings her experience as a caregiver for her dad, who had Lewy body dementia. She published her first book, Dancing with Lewy, narrating their experience, before and after her dad was affected by dementia. Her second book, Remarkable Caregiving: The Care of Family and Friends is a collection of true stories from six caregivers thrust into unplanned circumstances as they emerge wiser and more resilient.
Nancy’s monthly newsletter, “Caring for the Caregiver” and her website contain must-have resources. She is a speaker offering live and virtual keynotes, workshops, seminars, podcasts, and webinars for all events relating to the caregiving topic. She weaves in her caregiving stories, offering practical advice and emotional support.
A lifelong resident of Minnesota, Nancy and her husband raised two sons, and they continue to contribute to their communities. Professionally Nancy is a Contracts and Compliance Manager where she utilizes her writing skills to support a non-profit corporation. She loves to read, learn, and travel.
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