I thought I had the perfect life.
SYNOPSIS — I thought I had the perfect life in my cabin-like home in the wooded, rainy Pacific Northwest. I had a fulfilling teaching job, three grown children I was deeply proud of, and a marriage others envied. But in January of 2016, a crisis landed my husband Bill in the hospital, which changed everything. After several years of medical tests and doctor visits, he was finally diagnosed with Lewy Body Dementia, and I was forced to make a decision: find a home for him, or quit my job and become his caregiver.
I chose the latter and began dismantling my life.
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Bill collapses during a routine treadmill test at the hospital. That treadmill incident, symbolic of many meaningless tests and diagnoses, is the chronological pivot point of the book. Doctors diagnose depression, chronic fatigue, sleep deprivation. Once, I ask Bill’s neurologist about a new syndrome I learn about called Lewy Body Dementia. The doctor angrily tells me that we aren’t going there; that “would be like giving up.”
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Bill hallucinates, and is sometimes delusional. Unlike Alzheimer’s, he never loses his memory of the people in his life, but he can’t find the bathroom in the home he has lived in for more than 20 years. A Ph.D in English, he can no longer read nor write.
I look for clues in our past where I may have missed the obvious. Falls for no reason, strange exhaustion, playing guitar off rhythm.
I learn that I have to discern which drugs are helpful and which are harmful. I learn how to soothe the night terrors and leg pain. I learn that reading my journal aloud to Bill helps soothe and ground him.
“You remind me who I am,” he tells me, when I read to him from my journal.
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As my story progresses, I transform from a frantic juggler of too many commitments, to a woman who comes to terms with what is most important: Love.
Photo Credits from top: Mary Fitzgerald, Olympia, WA, 1997.
The family photo was taken by my sister Karen Nixon in Ocean Shores, WA, 2003.
Selfie in Gig Harbor, WA, summer 2016.
Photo in Portland, OR (Mt. Hood in the background) by Jill Fleischman, 2003.