Crisis Commanded. I Surrendered.

In January 2016, I quit my job teaching high school Journalism and English to become my husband’s 24-7 caregiver. Crisis commanded; I surrendered. For me, there was no choice. At the time, we had been receiving very little help from doctors about what was ravaging his cognitive and physical abilities. (A collapse during a routine treadmill test, for example, was diagnosed as sleep deprivation. That wasn’t it.) I embarked on a crash course in neurology, nursing, writing, faith and the joy of being fully present.

My story is part raw, intimate caregiving journal, often told with humor, and part chronicle of a common but misunderstood, and often misdiagnosed, neurological disease, Lewy Body Dementia. At its very core, it is a compelling 20-year love story, where deep connection and tenderness are the guides through the changes and the trauma of knowing that the most beautiful of partnerships is ending.

The main narrative takes place in our home in the rainy, wooded Pacific Northwest, but also travels back more than 20 years prior to a firewalking seminar and somewhat scandalous beginnings of our relationship.

“I find I dine on the sweets of a life lived rather fully,” he told me, “and you, Honey, are the sweetest.”

My husband Bill was a brilliant thinker, writer, musician and poet, whose sentiments of spirit transcended the reality of a body and mind that were breaking down. Through it all, I recorded conversations and kept a journal. I read entries to him, making his experience mine, and mine, his.

“One of the hardest things is living with the loneliness of not knowing if anyone understands. Or if I’m just crazy,” he said to me just months before he died. “Or if I’ve just lost the ability to be who I am. You remind me who I am.”