Hello! I mentioned last week that I was bringing my father to the Titanic Exhibition in New York City. I’m happy to report that the trip was a success!
“I had so much fun,” he told me more than once on the train ride back to Amityville. (He also asked me to remind him what we did when we were in the city. “What were we there for?” he said. But let’s not dwell on the sad parts.) Afterwards, I wondered why I was so nervous to take him to the exhibit in the first place. What did I think was going to happen?
The wind in my sails, I found myself plotting our next big-city adventure. A Billy Joel concert! A comedy show! A Coney Island day! (My dad worked in the 60th precinct for many years and claims to have ridden the Cyclone every shift.)
These were, of course, just fantasies. Like most people with dementia, my dad gets too overwhelmed by crowds to handle a venue like Madison Square Garden (he doesn’t like it when someone walks behind him—how can I expect him to tolerate a drunk dude singing “Piano Man” over his shoulder?). He wouldn’t be able to follow a standup set for more than a few minutes (and forget about him surviving crowd work—that’s a nightmare even if you don’t have dementia). Maybe we could swing a Coney Island outing in the off-season, but how would we get there (I don’t think he’d do well on a long subway ride)—and would the stress really be worth it (he’d probably get exhausted after two hours)?
Someone who hasn’t cared for a person with dementia might think I sound defeatist—and, at times, I’d even agree. (Give it a shot! What’s the worst that could happen?) But what these well-meaning(?) folks aren’t taking into account—and what I’m not always accepting of myself—is that an activity that brought my father great joy in the past is not necessarily an activity that will bring him great joy today. On the contrary, it can bring him great distress.
A couple of days ago, Emma Heming-Willis, Bruce Willis’s wife, appealed to paparazzi to keep their distance from her husband. Give him space, she asked. Stop shouting.
I found her plea, however linked to Bruce’s fame it was, to be surprisingly relatable. My father isn’t a movie star. He doesn’t have people shouting “yippee ki yay” at him on the streets (truly awful). But he does exist in a world where strangers yell and waiters talk too fast and cyclists whip past him on walking trails—and all of those daily indignities have the potential to upset him.
“If you are someone that is looking after someone with dementia, you know how difficult and stressful it can be to get someone out into the world and just to navigate them safely,” Heming-Willis said in her video. “Even just to get a cup of coffee.” I didn’t realize how much I’d been needing to hear that.
The Titanic exhibition seemed like a safe bet: We’d be going on a Wednesday, so I knew it wouldn’t be too crowded; it was just 20 blocks from Penn Station, where we’d arrive on the Long Island Railroad; and it included information that my father knew well, so he wouldn’t get confused or frustrated.
But I was anxious. What if I couldn’t hail a cab fast enough from Penn? What if someone was rude to my dad in a public restroom? What if we got there and he said he wanted to go home? As it turns out, the experience wasn’t perfect—I kinda thought the artifacts and replicas were underwhelming and the audio script, which we listened to on headphones, was sorta plodding—but it was nice, and none of my worst-case-scenarios came true.
My brother agreed at the last-minute to join us, which made my dad and me happy, and my father was truly engaged 85% of the time, even if we did have to skip ahead a few chapters to move things along.
The best was when we arrived at a photo of The Unsinkable Molly Brown.
“It’s your men out there!” I said, doing my finest Kathy-Bates-as-Molly-Brown impression.
“I don’t understand a-one-of-ya,” my dad said, doing his own.1
We smiled and paid our respects.
Heading into that day, I was trying to prepare for every possible outcome, but that was a pointless exercise—it always is. It’s my job to protect my dad, sure, but I can’t control everything that happens to him, and trying to do so will only keep him from living his life to the fullest.
Sometimes, my dad will get upset; other times, he won’t. In either case, we’ll manage. We are, in that way, unsinkable.
An update
I recently accepted a full-time staff job! (In case it wasn’t clear, I’m currently a freelance writer/editor2.) I still plan to publish this newsletter, but I’m thinking about how to keep it going without spreading myself too thin or sacrificing quality.
Should I make it biweekly? Publish on Sundays? Establish more structure (i.e. “essay on the first Sunday of the month / interview on the second Sunday of the month / audio on the third Sunday of the month / advice column on the fourth Sunday of the month”)?
I’ll be thinking about that this week (thoughts welcome!) and reporting back as soon as I’ve come up with a plan. Meantime, if I disappear for a week or two without notice, please forgive me and stay subscribed!
This project means a lot to me and there is more to come.
Stay unsinkable,
Patti
Yes, my dad can still quote Titanic. The brain is weird!
One day I’ll publish a piece about how it’s impossible, at least for me, to set boundaries as a caregiver when your Italian grandmother knows you make your own schedule.