She asks me for string to tie up the evening star.
My mother was diagnosed with Parkinson’s Syndrome and Lewy-Body Dementia in 2009. She was 76 years old; my father was 77. Her doctors prescribed an arsenal of pills, which one-by-one my father weaned her off, instead choosing to overhaul her nutrition and focus on exercise. Committed to caring for my mother at home, my family worked together to support my father in the exhausting and challenging role as her primary caregiver. My father learned to cook, shop, do the laundry and act as my mother’s maid—bathing, dressing and styling her hair.
I spent an average of 12 weeks each year, between 2011 and her death in 2015, relieving my father and sharing the experience with him. I was referred to as “the tall girl in the kitchen.” When I was not in Maryland, I joined my parents virtually each morning and evening for breakfast and dinner over FaceTime.
What began one afternoon with me chronicling a list of my mother’s many moods, turned into a poem: The Discord of Dementia. The Poetry of Dementia became our experience shared as a poem a day—a collection of moments. Loving and caring for my mother at home fundamentally changed all of us, and daily reminded us to live in the present with love, trust and patience.