One family’s journey with Alzheimer’s
Author Mike Barnes draws on his mother’s experience with the devastating disease
My heart lodged in my throat and my eyes stayed glassy over the brief duration of Be With: Letters to a Caregiver. It’s a lovely, loving and unflinching work reflecting on an awful, inexorable illness. Physician offices would do well by stocking copies.
Toronto’s Mike Barnes composes the book as four letters addressed to someone (“Dear —”) whose loved one has been diagnosed with Alzheimer’s — an affliction whose progression the author describes, variously, as a “passage of exquisite vulnerability,” a “time of prolonged demolition,” “sheer devastation,” a “withering assault,” and “hell.”
Barnes knows because Mary, his mother, was diagnosed with the disease at 83; by his fourth letter, she’s 91. (Of that terminal stage, he writes, “Having bored down through memory, language, thinking and feeling, dementia is now at work in the basement, taking apart the machinery that permits motor movement, correct perception and reflexes like swallowing and awareness of pain.”)
Tracing the disease’s four-step progression — moderate, moderate to severe, severe to very severe and late stage — Barnes, managing his own long-term bipolar disorder, recounts efforts at helping his mother “in her dark” while documenting the octogenarian’s deceleration years.
To his addressee Barnes states, simply, “I’m sending you the news I needed to hear myself. Needed and still need often, ransacking confusions to find a clear way forward.” Philosophically minded, he provides lines of guidance founded on experience. These include “soft” (fellowship, solace, understanding) and “hard” (facts, clarity, directions) items.
Throughout, Barnes relates the torment of his own emotional states and the myriad ordeals Mary experienced. He shares knowledge (“The truth is, there’s no graceful way to take control of someone’s life away from them”; “Caregiving places gruelling demands on health, jobs, relationships, all other interests”) and he asks questions (“How much room in your own heart?”) any caregiver must consider. He also asserts his primary insight: “But being with in person trumps all else. It’s the one way of caring most likely to be right, and the least likely to be regretted.”
As harrowing as the experiences were, Barnes notes changes to his mother’s personality that, in many ways, brought them closer together. Writing, “I would have done anything I could have done to spare her this. But since it had to be, it’s been my privilege to have gone through it by her side. I wouldn’t have missed it for the world,” he inspires admiration for the room in his own heart.