When It All Falls Apart — on Repeat

The anxious rhythms of end of life care

For months I’d been begging staff at my parents’ nursing home to help me get a cognitive assessment for both. I needed a word — is dementia appropriate? — for the drift I saw in my mom, my father’s conversational loops. Once I got them settled in at a nursing home near me, I’d mostly visited them on weekends, trying to spare as much of my workday as possible. There were always interruptions. If I didn’t just give up and go to the nursing home to ask for help in person, my office became an unofficial call center for their care.

There were calls from my dad because the aides never seemed to answer when he hit the call button, so he called me to call the nurse. Or the call button had quit working. They were waiting on maintenance, my dad said, and “I could die here, and they’d never know.”

It was the same conversation, same fear over and over from my dad. Sometimes I’d call and the nurse would say she’d just been in the room. He forgot. Other times I’d be away from my phone for an hour and come back to a dozen messages, my dad calling me for help so consistently I couldn’t believe anyone had been in over that interval to see him.

I was on the phone with a nurse or management at least a couple times a day, trying to make the place that was supposed to be caring for them actually care about the ways my parents were being failed.

I started asking for their toenails to be trimmed at the end of January. I naively believed staff each time they promised they would get it done. My hands are not steady, and I worried I’d hurt them with clippers if I tried. I didn’t grasp if I really wanted it done, I’d need to do it myself.

Instead, I called and texted and believed, and jotted each request on a spreadsheet that became more a record of my misplaced trust.

I found myself in the same cycle of unfulfilled requests over months that I asked for an evaluation with the visiting psychiatrist.

Conversations with my father were like Groundhog Day, a repetition of five-minute dialogue, I didn’t know how to break. When I talked to my mom, she usually knew who I was, but she would lose the thread as we talked and instead reach out to touch my…