The Northwest’s own Marilyn Raichle wrote a book about her mother’s life with Alzheimer’s. Don’t Walk Away, a Care Partner’s Journey is an uplifting account of a mother and daughter navigating a life with dementia.

“I grew up in the shadow of Alzheimer’s,” writes Marilyn. “Nearly everyone in Dad’s family and many in Mom’s developed the disease. 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,” she adds.

“As I began my caregiver journey with Mom, I saw only loss, not the person, heard only confusion, not the thoughts.”

Then her mother began to paint, and everything changed in an instant.

“Her fascinating paintings opened my eyes, ears, heart, and soul to a woman who definitely had something to say,” writes Marilyn. “So much to say – an appreciation of beauty, an enduring sense of humor and whimsy, more than a little mischief, and occasionally sadness and grief. All I had to do was to look and listen.”

When she did look and listen, she realized that she went past her own fear. She was confounded by everything she thought she knew 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 learned to 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.”

Marilyn writes that she joined her mother 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… It is the most rewarding thing I have ever done.”

Marilyn Raichle began her career in the performing arts. She founded 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 Harvard University’s Kennedy School of Government. Upon returning to Seattle, her career was upended when she became the family caregiver for her parents, both of whom were developing dementia.

It was a rocky journey, at first reluctant and ultimately joyous. 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. She is now the Executive Director of Maude’s Awards for Innovation in Alzheimer’s Care.

For the vast majority of people who think of Alzheimer’s only with sorrow, who can’t imagine a life with dementia as worth living, Marilyn’s book offers a different perspective and a much-needed bridge to understanding that persons living with dementia are valuable people, needing and worthy of our support to thrive and live with happiness.

Marilyn describes her book as being for every caregiver at the beginning of their journey, who may feel only dread, unsure about what to do, what to expect, asking, “now what?” The book is meant to provide reassurance, ideas, and hope. She says the book is also for those well into the journey, offering 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.”

Don’t Walk Away, a Care Partner’s Journey is illustrated by Jean’s artwork.

MORE INFORMATION

• More information about Don’t Walk Away, a Care Partner’s Journey can be found at http://www.dontwalkaway.net.
• The Washington Chapter of the Alzheimer’s Association offers information, resources and support, along with a 24/7 helpline at 800-272-3900. For more information, visit https://www.alz.org/alzwa
• The Memory Hub is a place for dementia-friendly activities , resources and programs. You can find support groups, memory loss classes, workshops on caregiving, creative arts and more. It is also home to the rotating “Frame of Mind” art gallery featuring artwork created by people with memory loss. The Memory Hub was spearheaded by the UW Memory and Brain Wellness Center and is located on the campus of founding partner, Seattle’s Frye Art Museum. For more information, visit https://thememoryhub.org/