Abstract
T
Tracey held fast to these details. Alarming as it was to me, bodily degradation was nothing new to her, and could be more readily acknowledged than other kinds of loss.
I thought of our first meeting, almost a month earlier, around this same table. He was already on a ventilator at that point. Like most family meetings, this one was called to provide disease state education, clarify goals-of-care, and get a sense of the family's concerns. In this case, “the family” was Tracey.
“What are you worried about?”
“Oh, I don't know. It's just if he—when he gets out of here, I don't know where he's gonna go. I don't know where he's gonna sleep.”
“Where was he staying before he came to the hospital?”
A pause.
“The woods. Out and about, you know.”
The social worker nodded. “I see. So you and him stopped living together…when?”
“Oh, about a year ago. Almost a year, yeah. But we always stay in touch. I always know what's going on with him. And we—it's just easier, ‘cause you never know what you're going to get from other people—we still have our thing.”
“What about your daughter? She doesn't want to take him on, or…?”
“Well, she really doesn't have room. It was supposed to be just her and her two babies, but then she got a boyfriend in there with her, and now me, too. And it's a two-bedroom. But I take care of the kids when she's at work.”
“You have a good relationship with your grandkids?”
“Oh, yeah. But they're gettin' ready to move—well, that's a whole story. This boyfriend of Mimi's, he's—me and him don't get along. I mean, he just got a job a week ago, finally, but he's been at her place something like two years. Didn't work, didn't do nothing around the house, just took up space, pretty much. So of course I don't like him—he's living off my daughter! That's just not right for a guy to do. And he knows it. So they're getting ready to move to Annapolis, and it sorta goes without saying that he doesn't want me going with them.”
“I'm sorry to hear that. Do you have something worked out for when they move?”
“Well, I've got five months to figure it out. I do know, if I get a place, then he's got a place.” She jerked her thumb in the direction of the hospital room. “I wouldn't even think about—I would never have a place of my own, and have him be outside. Same for me, if he had a place of his own. That's just how we do. That's how it's always been.” She looked to the ceiling and blinked several times.
“I heard you've known each other for thirty years? Is that right?”
“Since 1985. It would've been 31 years—I mean it will be 31 years next month.”
“Since you were teenagers!”
“Well, I'm older than him.” She smiled. “It was one night, we had been driving around and then we pulled over and were messing around in my car—this was 1985, you know, you could do that. And anyway, we fell asleep in the backseat, and at some point we hear knocking at the window. It's a policeman, and he could see a couple empty beer bottles below the seat, but we hadn't been drinking, ‘cause we'd been sleeping. Anyway, he goes, “I'm sorry Officer, I'm only seventeen!” And I turn to him and say, “You're only seventeen?” She was laughing now. “He was a little bit older than that, of course, he just said that to the officer. But I had no idea he was so young.”
She looked down at her hands.
“He still seems young to me.”
And then, a few weeks later:
“Mimi let him sleep over last night, ‘cause she knows he's been in pain. And I wanted the kids to see him.”
“How did he seem to you?”
“He seemed like himself! He even—whenever we sleep in a real bed together, I hate this, he always farts and then pushes my head under the covers—what's that called?”
“A Dutch oven,” said the social worker, smiling.
“Yeah. He was doing that. But we still got a good night's sleep…”
“You have to be pretty comfortable with someone to do that.”
“Yeah, well. It's been thirty years, like you said. He's pretty much my person.”
The room was quiet.
When a person dies in the hospital, the finer details become all important. The breathing tube will be removed at 1 p.m. Here is the protocol for an extubation. Here is the list of medications for the nurse. Have all the family members said goodbye? Have all the family members eaten lunch? This is the way to the cafeteria. But if the event of death forces detail out of abstract idea, then the process of dying does the opposite. Minutiae must be elevated to the level of abstraction, because there is no room in the chart for “the girl whose front seat he occupied for most of 1986” or “the first girl he told he loved” or “the woman who found him after he overdosed.” To establish a decision maker, the particularities must give way to the generic—he's your person, you say? After three decades of love and borrowed money, after vows in the emergency room, after a daughter and a daughter's too-familiar partnership, after all—does that label satisfy?
I think it did, for Tracey. In fact, I often sensed in family meetings a scrambling for labels among those gathered, an urge to distill the messiness of human relationships down to their purer forms. Maybe when someone is dying, the specifics begin to feel vulnerable, unverifiable—he knows I forgave him, right?—and there is comfort in blanket terms. Maybe just as confounding as the question of what will happen is the question of what has happened; who was I to him, and him to me?
So much of the value of palliative care accrues while other, more official tasks are carried out. This seems especially true of family meetings, which, it is frequently joked, can go for hours without so much as a change in code status. The real transformation occurs in the realm of symbols; the huge unknown of death is pinned down and given handles, while the petty details of loving someone coalesce into something named, something untouchable. I don't even know what numbers you were tracking at the end, but you were his person, Tracey, that much is clear.