I've been a caregiver for the guy in the photo above, 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 see my strong and rudely healthy husband sitting cross-legged on the bed in a hospital gown, day after day. 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 even 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, or after 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 through two succeeding brain surgeries, and 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 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, on some days, button his shirts. (He can still split firewood though, hence the photo at the beginning of the post!)
That unanticipated, unrealized slide into caregiving is why renowned literary journalist 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.
If you're female, you'll need this book someday: "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."
Sheehy walks readers through the journey in chapters shaped by walking a labyrinth from the start through the many turns, arriving at the center and finally, back out again. Each chapter includes some of Sheehy's own journey in caring for her husband, the legendary editor Clay Felker, through 17 years with cancer, 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.
Caregiving can be a grueling journey. But as Sheehy writes in this illuminating, informative and inspiring book, 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.
As for my beloved: We're home for another week before traveling to Denver again for his first infusion of Avastin, which we hope will starve his growing tumor by cutting off its vascular network. His energy and some of his brain functions–especially vision–have definitely been impaired by the tumor activity in his right brain.
But we still find grace notes in every day, like the wonderfully sky-blue blizzard of mountain bluebirds that fell on our yard yesterday after the weekend's spring snow.
And he is still determined to greet each day with "an attitude of celebration and gratitude." That's inspiring.