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

You Remind Me Who I Am

Crisis Commanded.

I Surrendered.

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.

When I quit everything to become my husband’s 24-7 caregiver, I embarked on a crash course in neurology, nursing, writing, faith, and the experience of being fully present. I wanted to soak up all the moments I could, knowing we were counting them down. We had been receiving little help from doctors about what was ravaging Bill’s cognitive and physical abilities. (A collapse during a routine treadmill test, for example, was diagnosed as sleep deprivation. That wasn’t it.)

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, my book is a compelling 20-year love story, where deep connection and tenderness are the guides through the changes and the challenges of knowing that the most beautiful of partnerships is ending.

The main narrative takes place in our Pacific Northwest home, 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 thinker and a poet, whose sentiments of spirit transcended the reality of a body and mind breaking down. Through it all, I recorded conversations and kept a journal. I wrote updates for family and friends, reading all to him, making his experience mine, and mine, his.