One of the great lessons I’ve learned from sharing my personal stories is just how connected we caregivers are, no matter where we live. As my life partner Ron Zoglin and I have traveled, we’ve offered a performance of my stories from this book when we’ve visited a new country.
Our first foreign event was in Dunedin, New Zealand, where we were warmly welcomed by the Alzheimer’s Society. After we shared a few personal experiences, a woman came up to me and said, “I really like your accent.” She had cared for her husband for years and had continued to volunteer at the society after his death. “These people really understand me,” she said.
A year later, Ron and I sat in a cafeteria in San Jose, Costa Rica, waiting to meet the man who would be doing a simultaneous Spanish translation of our performance. As Ron and I sipped tea, we heard a melodious voice say, “Go Jayhawks.” It turns out our translator had studied at the University of Kansas, a mere 40 minutes away from our home in Kansas City. Like us, he became involved in Alzheimer’s through personal experience.
In Florence, Italy, we shared our stories in an eleventh-century church, where the priest told us all, “The Alzheimer’s patient is the pupil in God’s eye.”
After our performance in Istanbul, a man stepped forward, his hat in his hands. Through the Turkish translator, he shyly told me, “My wife has Alzheimer’s and I’ve taken care of her for 10 years. Your story is my story.”
Caregiving Connects Cultures
Though the language and the venue may have changed, each performance—from the one in Santiago, Chile to the one in Hiawatha, Kansas—reminded us of how connected all of us are in this journey. Whether the culture was one with care centers and Alzheimer’s units or whether home care was the norm, the caregiver’s worries, fears, exhaustion, confusion, gratitude, and blessings were much the same. And they still are.
I originally self-published this book, wanting to use all the money it generated as a donation for Alzheimer’s programs and research. My goal was to raise $50,000; over the years, using the book as a catalyst, Ron and I have raised more then $80,000 for Alzheimer’s. I believe this indicates the growing numbers of people who are affected by this disease, and how much they hunger for support and understanding.
I Wrote This Book for Myself and For You
I wrote this book first for myself and then for you—I wanted to share my journey as a caregiver, hoping it could comfort and inspire others.
In this blog I hope to share with you some of the many bits of wisdom I learned during my caregiving experiences. I also hope to highlight the creative aspects of the caregiver’s journey. And I hope to learn from you. What are your gifts and blessings and how has the being part of someone’s journey through Alzheimer’s informed your life?
Deborah and Ron raised more than $80,000 for Alzheimer’s research and programs by donating all proceeds from the initially self-published version of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, to those causes. They will also donate a portion of the proceeds from this book.
This blog was written by Deborah Shouse, author of LOVE IN THE LAND OF DEMENTIA
