Courtney E. Martin is the author of many books, most recently Learning in Public: Lessons for a Racially Divided America from My Daughter's School. She writes about care, justice, and the human condition weekly through the Examined Family newsletter.
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My Father Has Dementia. A Church Became Our Refuge
I have never felt so alone as when I was caring daily for my father, who has advanced dementia. It wasn’t that I was actually alone. I had a loving family surrounding me, including my mom and brother; we had weekly care plan meetings where we would try to understand my dad’s patterns, his growing agitation, and what we might do to ease his suffering and sustain our village of care.
But even with that loving collaboration—more than most people have when they are in the throes of caring for loved ones with dementia—we felt deeply isolated from the wider world. A neighbor we’d never met came and knocked on our door one day, chastising my mom for not keeping better track of my wandering dad. The cashier at the local natural food store looked angry as my dad grabbed a day-old muffin and began unwrapping it before we’d paid for it. (He’d lost all sense of the norms regarding paying for things.) Bringing him with me on errands was the only way I could manage it all as a “sandwich generation caregiver” (a popular shorthand for caring for children and aging parents at the same time), and yet I knew that his presence would complicate everything and leave me even more depleted.