I want to recommend a fantastic book about caregiving called An Uncertain Inheritance, a collection of personal essays, edited by Nell Casey. It’s not a how-to book or filled with many straight-forward tips. But this collection offers great solace and guidance to anyone who has ever cared for a sick or disabled loved one.

Eleanor Cooney writes about caring for a formerly “hip” mother with Alzheimer’s. She tells us how she clung to “optimistic visions” – ordering special brain nutrients off the internet, and dutifully laying out vitamins – while her mother declined in painful incremental ways.  

The self-proclaimed “baby of the family,” Anne Landsman, writes about a complicated relationship with her ill father, and her ultimate struggle about whether or not to fly back to South Africa to say goodbye to him when she was pregnant with her own baby.

The story that hit me the deepest was the illustrated essay “The Elephant in the Room,” by cartoonist Stan Mack.  Sprinkled with drawings, Mack’s essay speaks to the nitty gritty of caring for his wife who has breast cancer. In the beginning, there’s room for humor as he draws himself marveling at the array of colorful “clowny pills for such serious jobs.”

Later, the cartoons become more serious, such as the scene when he’s in a hospital room with his wife after leaving her alone overnight. She is angrily telling him that the needle broke during a middle of the night blood draw, causing blood to spill all over her, and how the staff just swiped at it, as if her body was a tabletop.

“I promise you’ll never be alone in a hospital room at night,” Mack tells her.

“I’m not going back to the hospital at all,” she replies. And she never did.

The most consistent and compelling theme here is honesty. These narrators are willing to tell us the truth about the external acts of caregiving—the bedpans and injections, the awkwardness of spoon-feeding love ones or bathing another person’s intimate places.

They also speak honestly about the internal truths. None of these caregivers are perfect—they are intensely flawed, confused, ambivalent, broken-hearted, sometimes angry, sometimes euphoric and almost always uncertain.

I have great faith in the power and comfort of personal stories. My hope is that anyone who reads this collection will be inspired to write their own stories—whether in the privacy of a notebook or in the more public domain of CareCommunity. You don’t have to be a professional; you just have to be willing to tell the truth about caregiving to yourself and others.