What defines the life of a caregiver? How does it start? When does it end?

In her memoir, “One Hundred Names for Love,” Diane Ackerman looks at her own caregiving story through a microscopic viewfinder and provides the reader with enough anecdotal data to publish a study on what it means to be a caregiver. It is a deeply personal, honest, and moving narrative—a close-up look at another caregiver’s life, a perspective we rarely see.

The memoir opens on the day her husband, Paul West, has a massive stroke— and, consequently, the start of her caregiving journey. He suffers from global aphasia; a condition uniquely “tailored to his own private hell.” He is lucid, albeit confused, desperate to communicate but can’t say more than one word: “MEM.” Both Diane and Paul are writers, wordplay lovers and avid readers so Paul’s aphasia feels like the death of the husband she knew, only days before. Diane has little time to process her grief before Paul moves back home and she becomes his full-time caregiver. Paul is a hazard to himself, even in the hospital. How will he survive the chaos and unpredictability of home? He is unable to swallow liquids without it travelling to his lungs, has limited use of his right hand, and is perplexed by everyday tasks (such as shaving or using the toilet). Diane must assist him with all of this. And the journey begins.

[blockquote]“Where was the tutelary angel who should descend at such times and restore the everydayness of things? I felt acutely unqualified. I hadn’t volunteered for this job, and never would have, given how much was at stake. I didn’t want to be responsible for my loved one’s life.” [/blockquote]

“Caregiving takes a colossal toll and I was feeling its legendary strain.”

Diane’s experience as a caregiver, even with her circumstances under a magnifying glass, is one that almost any caregiver can strongly identify with, particularly with her range of feelings: ill-equipped, overwhelmed, guilty, and exhausted. There are many commonalities among caregivers and Diane explores them all. Friends and family no longer ask her how she’s doing, but rather how Paul is doing. She feels shame for worrying about how she will maintain her old life with these new responsibilities. Finding time alone is a struggle. Her “caregiver stress” is a result of “heaping a brain with more executive tasks than it was designed to handle.” Diane grieves for the husband she once had and travels along the path to acceptance of the husband she has now.

Paul’s progress is slow. And finding a balance between life and caregiving is painful. But eventually things begin to look up. After some seriously grueling work, Diane and Paul begin to embrace their new life. They discover humor and play in Paul’s aphasiac speech (one example of his odd, involuntary word combinations: “Lovely Ampersand of the Morning,” a pet name for Diane). Today the two “unwrap one day at a time, treating it as a star-spangled gift.” The caregiving journey never really ends for Diane but she forms a truce with the journey.

“Life can survive in the constant shadow of illness, and even rise to moments of rampant joy, but the shadow remains, and one has to make space for it.”

We think you’ll enjoy “One Hundred Names of Love” because…

… of Diane and Paul’s crafty wordplay

… reading about someone else’s life feels like making a new friend—someone who understands what you’re going through

… you’ll learn a lot about the brain and how it works

… of the beautiful writing and the exploration of language

… you don’t need to be a caregiver to enjoy this book

… the general tone of the book is uplifting and optimistic

… you’ll love Paul and Diane’s eccentricities, but mostly the love they have for each other

Diane and Paul Ackerman in Palm Beach, Florida. Photograph: Josh Ritchie/Polaris
Source: The Guardian