By Marilyn Raichle, Washington, USA
I never expected to be a caregiver. Mom warned us.
“Keep your distance. Your father and I will be in a safe place; there is nothing more you can do, so walk away. We won’t remember you, so live your life and don’t sacrifice it for us.” I believed her.
In 2008 I became a very unwilling caregiver—seeing only loss, not the person, hearing only confusion, not the thoughts. Then everything changed in an instant. Mom began to paint. Instead of loss and sadness, we were sharing joy.
Her fascinating paintings opened my eyes, ears, heart, and soul to a woman who definitely had something to say.
Her art invited me in—past the fear, confounding everything I thought I knew or had been taught about Alzheimer’s. Clearly here was a mind at work—not an empty shell lost in the fog but a joyful and creative person, with a life to live, filled with possibility. I learned the first important care partner lesson: I let go of the woman I felt she used to be, embracing instead the wonderful woman who was with me in the moment, not suffering from dementia, but living with it.
I joined her in real time where there are no worries, no regrets, no deadlines, no hurry—just the moment, clear, precious, and lived as it comes—where everything is, to use Mom’s words, “just delightful.” My visits with Mom stopped being dutiful, becoming for me essential—a source of joy and a path of personal discovery.
This is the story of our life together, filled with hope, joy and lessons learned—told as Mom lived, in moments, quickly forgotten but filled with laughter and discovery. And me joining her, as a partner, learning how to navigate a life with late-stage dementia, building the best possible life for both of us.
It is the most rewarding thing I have ever done.
And yet…
Mom and Dad were among the fortunate few with the means to live in an excellent continuing care facility. The vast majority of people living with dementia, and their care partners, are operating without a net.
There are far, far too many people who think of dementia only with sorrow, of people living with dementia as “empty shells,” no longer there, not worth caring about, with lives not worth living.
Come take a walk with Mom and me. Discover a refreshingly different perspective and a much-needed bridge to understanding that people living with dementia are valuable human beings, needing and worthy of our support to thrive and live with happiness.
For every caregiver, those at the beginning of their journey, who may, as I once did, feel only dread, unsure about what to do, what to expect, asking “now what?” this book provides reassurance, ideas, and hope.
For those well into the journey, it offers recognition, respite, and laughter. And always hope, secure in the belief our loved ones are still here, valuable people able to live with joy and purpose, active and connected to their communities.
Thanks Mom.
Buy Don’t Walk Away: A Care Partner’s Journey
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About the Author
Marilyn Raichle is the author of Don’t Walk Away: A Care Partner’s Journey. She began her career in the theatre, founding the Seattle International Children’s Festival, introducing children to world culture through the performing arts. In 2007, she received a Master of Public Administration from the Harvard Kennedy School of Government. Upon returning to Seattle, her career changed when she became a caregiver for her parents, both of whom were developing dementia. In 2010, inspired by her mother’s newfound artistic ability, she founded The Art of Alzheimer’s, celebrating the creativity of people living with dementia and the power of the creative arts to enrich and empower their lives. In 2019 she became the Executive Director of Maude’s Awards for innovation in Alzheimer’s Care, dedicated to celebrating and rewarding innovative programs and practices of care that are enhancing the lives of people living with dementia, and their care partners.
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