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Marilyn Raichle
Author
Don't Walk Away
UNCORRECTED PROOF Don’t Walk Away, a Care Partner’s Journey (text with art) I grew up in the shadow of Alzheimer’s. 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.” I believed her. As I began my caregiver journey with Mom I saw only loss not the person, heard only confusion not the thought. Everything changed in an instant. Mom began to paint. Her fascinating paintings opened my eyes, ears, heart, and soul to a woman with so much to say, so much to give. Filled with hope, joy and lessons learned, and illuminated by Mom’s art, Don’t Walk Away is told as Mom lived, in moments, quickly forgotten but filled with laughter and discovery. And me, joining her, as a partner, building the best possible life for both of us. It is the most rewarding thing I have ever done. Thanks Mom.
Reviews
Raichle’s vibrant account of her experience caring for her mother who is suffering from Alzheimer’s reveals the life-affirming power that art offers to those affected by this disease. “When my sister said to me ‘Mom left us years ago,’” Raichle writes, “I asked myself, ‘If she left, who’s there?’” Though “dimmed,” Raichle’s mother still lived a rich, complete life. Despite her mother’s previous insistence that Raichle “walk away” from the burden of her illness, Raichle chooses to get to know “the wonderful woman who was with me in the moment; not suffering from dementia, but living with it.”

Raichle initially meets her mother’s dementia diagnosis with despair, but “everything changed in an instant” once Raichle’s mother starts painting. Beautifully displayed throughout the memoir, Raichle’s mother’s paintings are vivid, strange, and fantastical, depicting mischievous creatures, but also sunsets, flowers, and in one particularly touching piece, a portrait of Raichle’s mother and the author, with a limb connecting their heads. The paintings allow Raichle to view dementia from a different perspective and learn that “there is more to this disability than pain and sorrow” when the care partner meets the person with dementia where they are, in the present.

Raichle’s description of her journey into this new space of joy, gratitude, and presence is both visceral and reflective. Her anecdotes of her visits to her mother’s assisted living facility depict the residents’ lives of abundance, despite all they’ve lost. Raichle’s mother and the community of people there may not be able to remember each other’s names or the meal they last ate, but their days are filled with laughter, spontaneity, creativity, and music—in one story, the room erupts in spontaneous singing and drumming, an exuberant display of the primal pleasure of shared creation. For readers who have loved ones with dementia, Raichle’s debut is a beacon of hope in the shadow of dementia’s bleak fog.

Takeaway: Joyous, hopeful account of living with Alzheimer’s.

Comparable Titles: Allison J. Applebaum’s Stand By Me and Kari Berit’s The Unexpected Caregiver.

Production grades
Cover: A
Design and typography: A
Illustrations: A
Editing: A-
Marketing copy: A

Tom Grabowski MD /UW Memory and Brain Wellness Center

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. “

“Don't Walk Away” is a remarkable and inspiring story of a daughter’s journey as a caregiver, and the insights she gained from embracing the strengths that were revealed in her mother living with Alzheimer’s disease.

The story is remarkable, first of all, for illustrating that dementia does not only destroy, but also spares things.  Jean, the mother, is witty, purpose-driven, curious, modest, and she surprises Marilyn, the daughter, with a vibrant creative impulse, moment by moment.  These retained strengths are recognized and brought out by Marilyn, who shares so much common ground with her, and thus helps her interpret the world, acting as a sort of scaffolding  on which Jean’s moments rest.  I can’t think of a case in my experience as a memory clinician where this principle is better expressed.  In this sense the story is a master class in caregiving.  I’m making a mental note that it should be required reading in the Memory and Brain Wellness Center.

The story also fascinates for its insight into a surprising discovery of caregiving in dementia.  In the usual order of things, a mother treasures and wonders about her infant, who is in a body but not yet able to fully communicate its inner life, though, later, it is clear that a unique personality and identity were there all along.  In our story, the roles reverse, and it is the daughter who wonders about and longs to know the mother, whose processes of expressing her internal experiences have become impaired and discontinuous.  Marilyn strains to tune in to her mother’s experience “in the moment” and is rewarded with the evidence that her mother “is still here,” and indeed “distilled to her essence.”  The story and dialogue are pithy and specific.  We come to know their voices and to share Marilyn’s epiphanies

And finally, there is the delightful device of juxtaposition of the narrative and quoted points of dialogue with Jean’s watercolor paintings.  We see more deeply through the playful art what we glimpse in the verbal play and Scrabble score.  In effect, Marilyn has curated her mother for us.  She provides a scaffolding for us, too, to understand her mother’s behavior in the moment.  Would that everyone living with memory loss had such a curator.

 

 

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