“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.
– Thomas J. Grabowski, MD
Professor, Department of Radiology/Joint Professor, Department of Neurology, UW Medicine /Tim B. Engle Endowed Professorship for Brain Health Innovations
Don't Walk Away 