I've been a caregiver for the love of my life, sculptor Richard Cabe, since he began seeing bird hallucinations at the end of August, 2008. I didn't think of myself as a caregiver then. He spent a week in the hospital that September after the birds came and went, and it was a shock to me to see my strong and healthy husband sitting cross-legged on the bed in a hospital gown, day after day, looking very like Ghandi in reading glasses. We both figured whatever was wrong in his brain was an aberration, and he'd recover quickly.
I still didn't think of myself as a caregiver when I learned how to administer his thrice-daily infusions of IV antiviral drugs, or after his brain surgery that October to remove the first brain tumor and his subsequent diagnosis with brain cancer. Not even when we moved to a suburb of Denver for six weeks that winter for his radiation. Or during the six months of his intensive chemotherapy late that winter and spring. Not during brain surgery number two, when his neurosurgery team removed much of his right temporal lobe. Not even when the pathology report came back with the worst news: "grade IV, glioblastoma." Somehow I avoided thinking of myself as a caregiver all through that fall and winter and the two succeeding brain surgeries, the trips back and forth to the hospital for various crises...
It really only hit me that I had become a caregiver when brain swelling degraded his vision so he could no longer drive, or help to prepare the meals we love to make using fresh and local food, or bake his widely admired whole wheat sourdough boule (loaves as sculptural as anything he ever created with stone and steel and wood). Or pay the bills, or some days, button his shirts.
That unanticipated, unrealized slide into caregiving is why Gail Sheehy wrote Passages in Caregiving: Turning Chaos into Confidence. The role takes over our lives insidiously, usually with no warning, much less time to think. Not only do we not consciously sign up, we often don't even realize we've become caregivers until it's almost too late to figure out how to not hurt ourselves—or others—in the doing.
Sadly, this book speaks to all of us, for the odds are that most women will be caregivers for aging parents, ailing spouses, or adult kids at some point in our lives. "Today's average caregiver," Sheehy writes, "is a 48-year-old woman who holds down a paid job (more than half work full-time) and spends twenty hours a week providing for an adult who used to be independent... And this role lasts an average of five years."
Even more sobering is the timing: "An overload of responsibilities? Yes, but more: "it's also a collision between conflicting stages of life. As adult children, we are now in the passage of our middle years, long past expecting our parent's financial support and soon to be free of supporting our own children. Ripe for second adulthood, we envision a life of novel pleasures." Until caregiving is thrust on us.
Sheehy, who spent 17 years caregiving her husband Clay through his journey with cancer, realized that this un-asked-for role can be a major transformative journey. In describing the stages or passages, she uses the metaphor of walking a labyrinth, emphasizing the possibility for personal and spiritual growth despite the often-crushing responsibilities:
The ancient labyrinth pattern is not a maze. A maze is a riddle, meant to trick and trap you with many misleading paths and dead ends. A labyrinth has one well-defined path that leads to the center and then back out again... We cannot get lost. However, the path is not visible, nor is it predictable, and that reflects our journey as caregivers. If we proceed with patience and faith, walking a labyrinth becomes an exercise in practical spirituality.
Sheehy walks readers through the journey in chapters shaped by walking a labyrinth, from the start through the precise rhythm of the turns, arriving at the center and finally, back out again. Each chapter includes some of Sheehy's own journey, plus facts and stories from other caregivers, research related to caregiving, and an extensive sidebar detailing resources for caregivers at each step along the way. There's a lot to draw on in this book.
What kept me riveted though, were the passages of what Sheehy describes as "raw experience" from her own journey. Although the book isn't billed as a memoir, this thread of personal writing is strong and compelling, and it spoke to me as a woman and a caregiver, beginning with the chapter titled "The Call," which is apt on many levels:
The call came to me in a beauty salon.
"'It's not benign."
"Not benign," I repeated dumbly.
"The cyst on Mr. Felker's neck. It's not benign."
"'But two years after the biopsy, you told us?"
"The pathologist recut the old biopsy slides. It's cancer."
And there her journey of caregiving begins. But as Sheehy writes, if we allow ourselves to be thoughtful and prepared, to ask for help and call on the resources available, caregiving can rise above the pain and terror and panic and exhaustion into an exercise in "practical spirituality," a walk that can transform our lives, families, loves, and selves.
Gail Sheehy is the author of fifteen books, including Passages, which remained on the New York Times bestseller list for more than three years and has been reprinted in twenty-eight languages. As a literary journalist, Sheehy was one of the original contributors to New York magazine. A contributing editor to Vanity Fair since 1984, she won the Washington Journalism Review Award for Best Magazine Writer in America for her in-depth character portraits of national and world leaders, including both President Bushes, Bill and Hillary Cinton, former speaker of the house Newt Gingrich, former British prime minister Margaret Thatcher, former Iraqi president Saddam Hussein, and Mikhail Gorbachev. Sheehy is a seven-time recipient of the New York Newswoman's Club Front Page Award for distinguished journalism. She lives in New York City. Visit her website.
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