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 to Mom, who was living with dementia. Like so many, I approached it with dread, focused on the loss—not the person—hearing only confusion, not the thoughts. Then everything changed. Mom began to paint.
Her fascinating paintings invited me in—past the fear, expressing thoughts and emotions she was no longer able to articulate verbally. Instead of loss and sadness, we were sharing joy, 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.
Our life together was 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, helped build the best possible life for both of us.
It is the most rewarding thing I have ever done.
For every caregiver 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?” take heart. Amid the sorrow there is hope. Begin with one small step. Find something you both enjoy. For me, it was Mom’s art, but it can be anything—singing a song, taking a walk, enjoying the view, playing a game, or just sitting together and smiling. Enjoy the moment and the person you love will emerge.
And for the far too many people who think of dementia only with despair, of people living with dementia as no longer there, not worth caring about, with lives not worth living, I invite them to discover a refreshingly different perspective. One that is a much-needed bridge to understanding that people living with dementia are valuable individuals with gifts to give and lives to live, needing and worthy of our support to thrive and live with happiness.
Thanks, Mom
Marilyn Raichle, began her career in the performing arts, founding the Seattle International Children’s Festival. In 2007, she received a Master of Public Administration from Harvard’s Kennedy School of Government and is currently the Executive Director of Maude’s Awards for Innovation in Alzheimer’s Care. Raichle’s new book, Don’t Walk Away: A Care Partner’s Journey, is available on Amazon.com.