My name is Clare. I’m a daughter and I became my dad’s caregiver in the final months of his life during the first year of the COVID pandemic. It was unplanned and extremely difficult but also the most important thing I’ve ever done.
My father, Joe, was actually a caregiver himself, but of the professional variety. He spent 15 years working at a hospice in Salida, Colorado—sitting with people at the end of their lives, showing up when no one else could. He would wander in on a day off (and unpaid) just to sit with his residents so they wouldn’t be alone and he found deep meaning in his work. But in early 2020, after developing serious respiratory symptoms, he was diagnosed with lung cancer.
He had always been clear about his end-of-life wishes. He wanted to be cared for by his coworkers at the hospice where he had worked for so many years but COVID changed everything. The facility was locked down with cases spreading inside and they certainly weren’t accepting new residents – not even my dad.
I could read between the lines when we talked on the phone. He didn’t explicitly ask me to move back, but I could sense his fear and uncertainty as his condition deteriorated. My husband and I picked up our life and relocated to my hometown so I could take care of him.
I set up camp at his house full-time. At night, I rolled out a sleeping bag on the floor next to his hospital bed. “I felt like I had to be a human tripwire,” I told someone later. I couldn’t trust that he wouldn’t try to get up, oxygen tubes and all, and risk a fall.
Home health nurses came when they could, but COVID had overwhelmed the local hospice system, especially in a rural mountain community. They were short-staffed and stretched thin. Still, they were kind. One of them was my dad’s former coworker, and I’ll never forget hearing them giggle together behind the door while she lovingly shaved his face.
When he was still lucid and realized I was committed to caring for him, he was very upfront about all the stages I could expect from him at the end of his life. He was trying to prepare me for what would follow – disoriented and sleeping a lot, in and out of consciousness, even the death rattle you hear at the end with breathing. I wrote it all down diligently and he was right, spot on down to the number of days.
These summer weeks became a rhythm: chia seed pudding, coffee, a chopped-up Payday candy bar. He loved music and podcasts – George Michael, George Harrison, BTS, and the Scissor Sisters. He loved podcasts like Pod Save America and since he was a self-proclaimed “Taoist Catholic,” I’d read aloud from The Mindful Life while the hours passed. I really learned what true caregiving means but I also neglected my body’s own cues. I forgot to eat. I cried quietly when he slept. I worried constantly. Was he breathing? Was this the moment? I’d hold my hand near his nose to feel for his breath. I was in survival mode.
After he passed peacefully, the grief hit me in waves. I couldn’t sleep for months. Grief insomnia left me lying awake at night with visions of his final days. I started EMDR therapy to process what I had been through: the visuals, the silence, the helplessness. Slowly, I began to heal and sleep again.
What gave me hope? Looking forward to seeing his village. Because of the pandemic, we waited to gather as a family almost a full year later to celebrate his life – eating donuts in the park, hearing each other’s stories, and finally getting to say goodbye together in person.
These days, I care for my mom. She lives nearby and I take her to medical appointments, advocate when doctors breeze past her questions, and help her navigate technology like MyChart and pre-op instructions. I joke that I’m her daughter and her USB drive. This kind of emotional labor is not visible in the way that raising children is, but it’s also 24/7 because I plan my life around her needs.
My advice to others will always be: You can’t write the ending. It writes itself. Your job is to stay present, to love, and to bear witness.
