The beginning of my caregiver journey

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.  We won’t remember you, so live your life and don’t sacrifice it for us.”  I believed her.

As I began my caregiver journey with Mom, I saw only loss, not the person, heard only confusion, not the thoughts.  Everything changed in an instant.

Mom began to paint.

Everything changed.  Her fascinating paintings opened my eyes, ears, heart, and soul to a woman who definitely had something to say.  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.  

Her paintings were good, always interesting, and sometimes remarkable.  I began visiting more often, always eager to see what she had created.  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 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. 

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.

I write this first for every caregiver. This is a large and growing population.  An estimated 6.7 million Americans over age 65 are living with Alzheimer’s Disease and related dementias.  In 2022, more than 11 million caregivers provided an estimated 18 billion hours of unpaid care.

For 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 human beings able to live with joy and purpose, active and connected to their communities.      

For the wider dementia care community, the caregiving community, senior living and long-term care providers, social workers, and senior centers, the medical community, especially nurses training, and the vast number of organizations and people nationwide who are developing programs and practices of care, this is a welcome and valuable resource.  

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, I offer a refreshingly different perspective and a much needed bridge to understanding that persons living with dementia are valuable human beings, needing and worthy of our support to thrive and live with happiness.