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MY LIFE REARRANGED  by Susan G.  Miller


Musings of an Alzheimer's Caregiver

by Susan G. Miller

Pub Date: May 4th, 2018
ISBN: 978-0-9679584-0-8
Publisher: Kaleidoscope Kare

In this motivational memoir, Miller (No Man’s Land, 2003, etc.) uses poetry and advice to paint a poignant picture of her time as a caregiver to her spouse.

The author’s husband was diagnosed with Alzheimer’s disease at the age of 55, and over time, her role in his life transformed from companion to caregiver to custodian. In this book, she divides this experience into three stages. The “Beginning Stage,” when Alzheimer’s is newly diagnosed, evokes a “flood of emotions,” she says, including “guilt over being short-tempered…sadness and anger about the diagnosis…jealousy toward those more fortunate, fear of the unknown, and doubt about one’s abilities.” This is the time for caregivers to “put things in order,” she asserts, and adjust to a new normal. The “Middle Stage,” she writes, is more of a “holding pattern,” as the patient’s functional abilities significantly decline and the caregiver’s burdens increase. Miller repeatedly emphasizes the need for caregivers to “take care of [their] health and sanity”—in part, by arranging for outside help. The “Final Stage” is often the longest and saddest, she notes, as caregivers prepare for the patient’s final decline: “Trying to carve out a separate life—along with the dichotomy of staying connected while letting go—is the major task for caregivers.” Miller’s artistic prose style is highly effective, and fellow caregivers will appreciate the articulate, genuine sentiments from someone who clearly understands their plight. After offering practical advice in brief chapter introductions, the author presents numerous creatively formatted, emotionally charged prose poems: “I am exhausted, alone, weary, / carrying both of us. Symbiotic victims—one excused, one invisible.” By being open about negative emotions, Miller avoids a major pitfall of many caregiving books in which the authors “must be saints or darn close,” as she puts it. But the book isn’t bleak, as the author also shares personal triumphs, such as finding peace in a support group.

A stirring book that offers an ideal blend of direction and comfort to fellow caregivers.