One funny thing about being in your mid-thirties—or perhaps being anywhere north of, say, twenty-five—is that your uninteresting past becomes a kind of quiz show. I used to play the double bass. “Ohh!” my friends will react, as if high school orchestra is incomprehensible to the adult mind. I used to be a decent skier. “Even the blue runs?” co-workers will crow in shock. If I drink a bit I might admit to a long-dead hobby of beatboxing. In front of people. On purpose1.
Along these lines, and especially with new friends, there comes a time when I have to confess a lifelong weakness. I don’t hide it, per se. But I don’t open with it either. At some point, I’ll be chatting with a pal and they’ll ask an innocent question about upcoming plans. Who can be indicted for wondering, “Are you busy on Saturday?” Or even more generic: “What are you doing for Thanksgiving?”
“Oh,” I respond. “I’ll be in Oklahoma, actually.” This is not the confession. Many people are required to be in Oklahoma. I don’t want to get into the whole history of people being required to be in Oklahoma, which I hope is an acceptable omission to make as a writer. And it might not be, but that’s also not a question I’m getting into right now. There’s a concern for practicality here. I can’t be held hostage to the ways in which American travel is a vast field of culturally insensitive rakes which might whap one in the face without warning. Just saying “Oklahoma”—the etymology of which is Choctaw (cool?), meaning essentially “red” “people” (whap!)—can lead one into explanations for one’s explanations.
Plans are asked about, is what I’m saying. And my answer, at least once a year, is “I’ll be in Oklahoma.” The issue is that I’m from Colorado and still live in Colorado and many people from Colorado, especially those originally raised in Oklahoma, respond with unfeigned snobbery. Not always, but enough of the time. “What? Really?” Or sometimes the subtext is just text: “Do you have to?”
I hate this response. I’m a simple person. I’m not saying I don’t understand their prejudice, but at minimum it puts some onus on me to prove my sensibilities, to either educate them about Tulsa, for example, and how it has the best riverside park in the country, or to take the easy way out and tell them the trip is an obligation. “Yeah, my whole family is from there.”
To be clear, my whole family is from there. I have visited my entire life out of actual obligation. But routine creates belief. Ruts create desires. I love Oklahoma. I have that luxury, maybe, as someone who only visits Oklahoma, who only sees the best of its people—my family—and who can return to my job at a well-funded public library in a state where most public libraries aren’t that controversial.
All the same: I love Oklahoma. There are few places in the world I enjoy going more. But the visits are becoming complicated. My grandfather is ninety-one and has some form of dementia. He’s in assisted living. My mother and her brothers and their wives take turns helping on the weekends in an attempt to lessen the load on my grandmother, who is ninety herself and living independently. The staff at his home is reduced on the weekend. Buttons might be pushed and ignored for lengths that are unthinkable on a Tuesday.
I recently saw my grandfather in his new arrangement for the first time. The trip was hard. The trip was beautiful. The tensions you might expect, the goodwill of those who love him butting against their own and others’ limitations, predominated. But I was surprised by many things. I am keeping most of them to myself. I love my grandfather.
One surprise, however, was the way we all relied on similar descriptions of what was occurring. We placed my grandfather in the past. “He’d hate what’s happened to himself,” folks kept saying, including me. My grandfather’s living personhood was buried beneath our warmth for the person he used to be. He wasn’t with us so much as removed from the now, watching now happen at a distance, if he was anywhere at all.
The tragedy of my grandfather’s condition was most legible—was total, in fact—only if the real grandfather was his middle self. His essential self was not in a continuum, but was fixed at an earlier moment. There was no exact blip of change for him—no sudden accident—but at some point we spoke as if he’d crossed a threshold from Actual to Former. “He’d hate what’s happened to himself.”
And from a certain angle, sure! He has been reduced. The full range of his personality, of his person’s expression, has diminished. But all the clichés of “you start helpless and you end helpless” and “you live from dependency to dependency” have perhaps failed to convince us at the deepest levels that someone like my grandfather is no less of a person, even if he’s a different person, simply because he’s lost certain capacities.
“Did you watch the football games this weekend?” a patient care worker asked him.
“'Course,” he said.
“Who won? Anyone you like?”
“I don’t know. I can’t remember anything.” A wry smile. A joke. The flicker of who he is, not who he was, rising to the surface of our observation. The personality came and went, but it was consistent.
He never complained, for example. I won’t detail what it’s like for a grown man to be quarantined to a bed all day; a strong man who was walking as many as 5 miles every morning only 4 or 5 years ago—miles that dwindled, but persisted to some degree until he was moved into assisted living. But he never complained while I was there. He reacted. Sometimes strongly. Once, when an aide hurt him on accident, he told her to stop apologizing. “Everyone keeps apologizing. It don’t change what happened. You’re just doing your job. I know that.” He thinks you’re a dumbass but he also doesn’t want to be a bother. That is my grandfather.
At one of our lunches, he told me why he doesn’t like to eat chicken, another secret I’ll keep for myself. I showed him a picture of my youngest child, who at two and a half is not someone my grandfather remembers. He re-meets him every lucid moment I’m around. My son’s middle name is my grandfather’s first name, Roy. “You saddled him with that, huh,” he said. Another wry smile.
A few years ago, Matt Bruenig—leftist policy-wonk and social media troll par excellence—came out strong in defense of children, um, I guess, existing. He was responding to the usual online sources that enjoy asking whether or not children should be treated as humans—with access to transportation across states, for instance—or if they should be given shorter shrift than most millennials’ dogs. Bruenig delivered his usual mix of pragmatism and provocation:
Complaining that an adult with severe autism or Down Syndrome was on your plane or in a restaurant and misbehaving would be bizarre and very few people do it, especially publicly. Young kids, who have similar levels of mental and behavioral development, shouldn’t be regarded any differently.
A similar slippages exists in the way we talk about those who age into mental disrepair. No eighteen-year-old wants to be spoon fed, yet that’s the basic trajectory of old age. We go from strength to dependence. The grace we have on the front end, the way we think of our children as always being themselves even though they used to garble their speech, mess themselves, or in some cases seemed to have completely different personalities before puberty—this wholistic generosity is what the aging deserve.
It’s rare to hear it, though. Our sense of injustice roils: My grandfather shouldn’t have to be infantilized in his senescence. I feel this tragedy deeply. At the same, why did he have to be a baby at all, a literal baby? He didn’t choose that situation either.
What my grandfather does choose at this moment is to live within his current conditions. He nearly licks his plate clean if it’s a dish he can manage. Declaring himself full one evening, he reversed course as soon as we said there was dessert. “You want some cheesecake, grandpa?” His eyes grew as large as the white plates we kept ushering in and out. He didn’t know my name, but of course he wanted cheesecake. Cheesecake is a joy.
The fullness of his person—his soul—is no less worthwhile simply because the interface, the weaving of body and soul and mind, is breaking apart. It was a hard weekend with no illusions about the wear and tear he’s experiencing, or the burden that his continued existence imposes on all who care for him. I’m not happy about his lot. Maybe there was even some crying. Not in Oklahoma. My lord, can you imagine? I saved all my tears for where no one would notice a bearded man bawling into an 11.4% beer. I waited until Denver.
There’s no denying the frank truth that his death will bring relief. Many lives are currently spinning around his own, and some of them deserve a rest as well. But that’s also not how we should measure a life’s worth, and (again) almost never how we measure our first dependency. “Enough diapers! Kill the babies!”
No, the equally frank truth is that he persists, and he must be accepted and honored for himself and not only who he used to be. I hope I get to see him again, and soon.
I love you all.
There is no amount of alcohol to prove that I still have chops.
Beautiful! Thanks for sharing this, Joel. My mom has dementia and you've hit the nail on the head. The person is still there in all their fullness and no less worthwhile than before. Hope you and your family are well :)