From the beginning, I wanted to tell the often-ignored story of long-term care through the eyes of the families living this experience. Having been a caregiver myself, I knew how compelling these stories are, and my goal was to give readers a deeply personal view into what it is like to be both providing and receiving care. I needed to describe this world from the perspective of seniors and the disabled, but also from the vantage point of those caring for them-both family members and paid aides.
From my many years as a reporter, I knew most of the experts I'd need to talk to. But how would I find the families?
I discovered some through elder care professionals, such as care managers or insurance agents, but sometimes I stumbled on the best stories purely by accident.
That was how I met Walt and May Barrett and their daughter Michelle. One afternoon, as I was visiting an adult day center, I asked if any of the participants and their families might want to spend more time talking to me about their lives. The director put me in touch with the daughter of a man I had met that day. That didn't work out, so the director told me about Walt, who had not even been at the center the day I stopped by.
Like so many of those I met, the Barretts welcomed me into their family. We arranged our first meeting at Michelle's house one Sunday afternoon. Walt was wearing his airplane vest, May was dressed as if she had just come from church (which she had), and Michelle was in jeans. We spent the afternoon chatting and for the next two years, I visited their home, and even attended their birthday parties.
During that time, Walt's Parkinson's and dementia have gotten worse. But May and Michelle patiently answered all of my questions. I taped some interviews but usually scribbled notes-I eventually filled 15 notebooks just from my talks with families.
After each encounter, I'd type the notes into my computer as soon as I could. But sometimes, a full chapter would start to come together in my head. While flying back from one family visit, I scrawled out a narrative on a pile of U.S. Airways cocktail napkins.
I started writing in September, 2007.To my amazement, I wrote chapters exactly in the order I had outlined them. I never thought of the book as an 85,000 word project. Instead, I approached it as 14 separate 6,000-word essays. With each chapter, I tried to tie family stories with information to put their lives in a broader context. My research filled five file drawers, three bookshelves, and who knows how many bits of data on my computer.
I sent my manuscript off to St. Martin's in September, 2008-three months ahead of schedule. My goal was to get the book out in the spring of 2009, just as a new administration in Washington would begin debating health reform. Long-term care needs to be part of that discussion, and I hope that Caring for Our Parents will do its small bit to make that happen.
