Welcome to Hospice

Let's get (un)comfortable together

Photo by Katherine Hood on Unsplash

My dad was released from the hospital last Monday into hospice care.

After a 22-year slog with Parkinson’s disease, his doctors have determined he’s in the final stage, which, according to the internet, can last anywhere from a few weeks to a couple of years.

I can’t say my brain’s been great so far with managing the grief and uncertainty. My concentration’s shot. Thoughts float around, bumping against each other, not quite stringing together into anything resembling coherence.

This is hard.
I want to fix this.
There isn’t anything to fix.

I keep writing. Mostly beginnings of paragraphs that trail off before I can figure out an ending. I’m trying to make sense of this moment, to write something meaningful about this time, but my experience as a daughter of a dying father resists being shaped into neat, digestible packages.

I spend a lot of time staring off into space.

Then I type a little more, reread, delete. I second-guess every line. Is that true? It feels a little like the experience of repeating a word so many times it loses its meaning. Surf. surf. surf. surf. surf.

I do what I can. I try to be useful.

Yesterday that meant going to my parent’s house to join my mom for a meeting with the hospice social worker. Based on my previous meetings with social workers in healthcare settings, I kept my expectations low. Which is good, because they were met exactly by the very nice, very young woman who showed up at the house, assured us she was here to provide emotional support, provided exactly zero emotional support, then left promising to email a list of mortuaries.

I helped my mom shift my dad up in bed. He’s lost the ability to control his body and over the course of the day, he slides down off his pillows. My dad is 98% bones and skin at this point but moving him around takes an astonishing amount of effort and requires two people. I stood on one side, my mom on the other, and on the count of three, we hoisted the cloth beneath him up to the top of the mattress.

Then my mom fed him pills in applesauce while I joined him in watching some boatbuilding YouTube—young people in wool beanies sawing and sanding, planking and restoring wooden boats—the work he himself did for decades.

He wanted to show me a particular boat from a particular video, so we went through the comedy routine of him trying to get my mom to navigate through YouTube thumbnails with the remote. My dad waved his arms toward the TV, calling out barely intelligible commands (his speech is mostly vowels at this point), “Uh! Ow! O-ah! O-ah!”

He waved his arm back and forth, wanting my mom to side scroll. My mom punched the buttons, her annoyance growing, “It doesn’t move over like that!”

We never did find the video he wanted, so we settled for watching the last five minutes of one called Rebuilding Tally Ho: 4 years in 29 minutes on the Sampson Boat Co channel.

Then he drifted off to sleep. I had a few more minutes before I had to leave to pick up my kids at school, so I sat with my mom awhile longer, listening to the easy-to-share stuff—how annoying my dad is being with his new wristwatch call button—trying to hear the more-difficult-to-say stuff that lives underneath—This is grueling. Heartbreaking.

When I was 18 years old, I took a gap year after graduating high school. I lived at home, working two jobs at the mall, saving money for school. Most of my friends were away at college. I was restless, a bit unhappy.

Throughout the year, my dad would come into my room periodically to encourage me. He’d say, “You’re in a transition time. Right now, you’re in-between, and it’s hard. But it won’t always be like this. Hang in there.”

We’re definitely in a transition time. It’s uncomfortable. Disorienting. Sometimes brutal.

We’re doing our best to hang in there.