Many years ago I read eight words that shaped the direction of my career as a public radio producer, writer and speaker. Author and poet Muriel Rukeyser wrote, "The universe is made of stories, not atoms." People read a story in a magazine or a newspaper and are, unexpectedly, deeply touched. In sharing a personal and poignant tale, someone totally unrelated to our personal situation may offer us an unexpected source of comfort and inspiration. Such is the power of a story. That is why I decided to share more than 35 stories of caregivers in a new book, The Gifts of Caregiving: Stories of Hardship, Hope and Healing (Minneapolis: Fairview Press, 2002). The volume also comes with a CD of my radio program, Hardship Into Hope: The Rewards of Caregiving, so that readers can also hear the voices of the caregivers in the book.
Among the many inspiring stories people told me, one held special meaning for me. A friend in Los Angeles shared with me what she labeled "a miracle of healing" between her and her dying mother. A lifetime of abrasive and argumentative contact had evolved into unselfish caring, mutual respect and deep love. It was a tale that I wished I had heard a quarter-century ago, when I could have benefited from its healing power.
Twenty-five years ago, when my mother became ill and partially dependent, the word caregiver didn't exist. As nearly as I can determine, it wasn't in a dictionary until 1997. I didn't think of myself as a caregiver, but simply as a daughter who, when her parents needed help, would figure out how to provide the care that was needed. In our situation, my daughter and I became a caregiver team. She lived a short distance from her grandmother; I lived and worked almost 2,000 miles away in Santa Monica. I made the major decisions, provided suggestions from a distance, and on most every Friday, I'd fly back to my hometown to relieve my daughter until I had to leave on Monday.
I remember wishing I knew someone else who was a caregiver. In my circle of friends, it seems that I was the first middie-aged daughter taking care of an aging parent. My friends wanted to help, but my situation was out of the realm of their experience. I constantly juggled fear, frustration, irritation, indecision and guilt that I wasn't doing enough for my mother and that I shouldn't be living on the other side of the country during her time of need.
At the end of my mother's life, the most difficult thing for me was the sadness I felt, not only because of the loss, but because she and I never openly discussed and repaired some of our misunderstandings and unresolved issues. Perhaps, if I had heard stories of motherdaughter reconciliations before my mother died, I might have put some of my conflicts with her to rest long ago.
FAR FROM ALONE
Family caregivers often feel burdened, overwhelmed and stressed. There's a strong chance that a person who has taken on the responsibility of caring for another experiences feelings of depression, helplessness and isolation. Yet, they are far from alone. Dana Reeve, wife of actor Christopher Reeve, who suffered paralyzing spinal cord injuries, told me, "One of the things that I've realized is that I'm part of a group called caregivers, and there are millions of us. It's often something that we take on willingly because we love the person and because we feel it's our duty, and yet we don't see it as a job, necessarily, and it really is. Not that we wouldn't do it anyway."
An estimated 25 million people in the United States are currently providing care and assistance to someone who is ill, frail or disabled, or have done so in the past. People most often become caregivers. through unforeseen and unplanned-for circumstances. Caregiving is destined to touch almost every American's life. Former first lady Rosalynn Carter, whom I interviewed for my book, summed up this reality when she observed, "There are only four kinds of people in this world-those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregiversthat pretty much covers all of us. …