Paid caregivers from the outside are held to rigorous standards of conduct.
“Where’s the hospice aide?” I ask one day, darting into the apartment in between work and home.
“I fired hospice,” my mother says.
“Very funny.”
“I did.”
“Nobody fires hospice. That’s like… I mean… um… they’re the last word in… last words.” I concede that this is not exactly Martin Luther King Jr.’s “I Have a Dream” speech. I’m kind of babbling while my mind bids farewell to all those brisk, competent hospice workers who were—I had thought—going to get me through those moments when I’m weak and exhausted and afraid, like right now, for instance.
“Hospice are the people who take care of you when you have nobody else,” I try again. “Everybody likes hospice.” (Possible title for final Raymond episode?)
It’s no use. My mother is scared. Her response to fearfulness and isolation has always been to set up an even more fearful and isolating situation. The hospice people are not helping enough. So they must go.
We find a different hospice agency and reenlist.
“You have to promise not to fire them, even if the aides show up late,” I beg.
“I’m not promising anything.”
My mother does most of the work and grows so tired that we arrange a five-day respite for her. My father will go to a beautiful nursing home in the woods.
Early one morning, I drive my father out to the McLean Home for this short stay. I step through the sliding doors and behold the sunlit atrium, the California fireplace, the greenhouse, the smiling and friendly staff, the soft jazz playing in the lobby. It is impossibly peaceful and cheerful.
“You don’t happen to have a second bed available, do you?” I inquire weakly.
The soft jazz turns out to be a man playing, perhaps a little dementedly, the Natalie Cole version of “Avalon” over and over, but in all other respects, McLean appears to be paradise on earth for the middle-aged, the weary, the sandwiched. I don’t want to leave.
Conversation between me and my son, who is eight.
“Does anybody live to be one hundred twenty?”
“Not very often.”
“How old will I be when I die?”
“Old, I hope.”
“Will you live to be one hundred? How old will I be when you’re one hundred?”
“Sixty-five. We can be old men together.”
I get a lot of this these days. It’s evening, and Joey and I are driving back from McLean. He’s a trouper about visiting my father, but spending a lot of time around the very old, around the near-to-death, has stirred up questions in him.
“Do really old people want to die?”
“Sometimes. Sometimes people who are ninety or one hundred say they feel they’ve lived enough; they’re tired in some way we can’t even begin to understand.”
We come up over a rise in Simsbury, and Hartford surprises us, twinkling in the distance. Life is long, life is short. We’re just guests here, checking off tasks, getting through our lists. The car surges through the night. There’s a lot to talk about.
When the five days are over, I drive out to bring my dad home to my mother. I have slipped into some horrific high-functioning mode, where my voice booms out cheery good advice to him and my manner is that of a bustling and businesslike male nurse.
This is precisely what my father does not need. He needs some humanity from me. He needs to visit with me in the kind, intensely personal way that a father may visit with a son. I do not give him that. I give him an officious, hearty, no-nonsense parody of myself
“I thought we might eat lunch together,” he mumbles weakly.
“No time for me to eat!” I boom, with a big false smile. “I’ve got to get you all packed up, load up the car, get everything squared away with the people here while you eat.”
I have become a Sim. “The Sims” is a computer game in which you build digital people and orchestrate their lives. They marry, have babies, get sick, lose jobs. They seem to set themselves on fire by accident a lot. You assign personal traits to each one, but the palette of emotional colors is pretty limited.
I read that in 2001, the people who play “The Sims” noticed an odd phenomenon. Their fake people would begin to cough and then die, in uncommonly large numbers. The players began discussing this on Internet message boards and discovered a common denominator. The game company’s Web site allowed players to add new furnishings, accessories, and other items not originally included on the disc. The people whose Sims contracted this unexplained Simtheria had all downloaded an extra pet, a guinea pig, and had been delinquent about making the Sims clean its cage.
The company admitted that, yes, the guinea pigs were programmed to give the people, in some circumstances, a fatal disease. Behind that lay a deeper, more troubling truth. The “things” in the Sims world were all impregnated with programming that elicited certain responses. The Sims appeared to have rich identities, but that was an illusion. They were pretty empty, but their environments were just loaded with invisible personality fragments that could be activated if touched.
This is how I feel, during these trying times. Not like a person with real emotional depth but like the framework for a person. Some kid’s hand on a mouse is moving me through my days, and when I brush up against a wheelchair or a wristwatch, I may smile or cry, but it’s just the thing I touched doing a data dump into my hollow self.
Even so, there is no excuse for my fake joviality here in the elysian nursing home. But have you ever had that feeling? That if you gave one inch to your true emotions, you’d be in a free fall? Easier to be a Sim.
The next day, I bring my faithful and true twelve-year-old mongrel dog, Roy, to the vet for more tests. He appears to have liver problems, as does my father, which makes one wonder if I have somehow offended the Liver God.
By bedtime, I am so tired that I have my father and Roy’s problems hopelessly conflated in my head. I know one of them is under strict orders not to eat any more dead animals in the woods.
Conversation between me and my son, about our aging but preternaturally young-looking dog.
“How old is Roy?”
“Twelve.”
“How old would that be for a person?”
“I’m not sure. Do you multiply by seven? If so, he’s… eighty-four.”
“How can he be?”
“Good care, good food, lots of love. And I think he has good genes.”
“What are genes?”
“The parts of your body that say a lot about your health and how you’re going to be, in general.”
“Do I have good genes?”
“I think you do.”
“Do you have good genes?”
“Um. Probably only so-so.”
“Who has the best genes?”
“I don’t know.” (I refuse to say Michael Jordan.)
(Said with amusement.) “Maybe God. He’s been alive so long.”
Later. Son, Mexican-American, regarding his brown-haired, brown-eyed guinea pig: “If I were a guinea pig, I would look just like Edward.”
And now I recollect a conversation from a day in 1996, before the terrible sickness set down its giant scaly foot on us. My wife is telling my father that Roy is slowing down.
“That’s what big dogs do. They slow down. They sleep more. They get quieter. It almost helps prepare you for the fact that they’re going to die.”
My father smiles fiendishly and inclines his head toward my mother.
“Could you please tell this to Barbara? It’s exactly what I’ve been trying to do for years, and she won’t let me.”
My father is slipping away, so that he can only answer the most basic questions. Are you hungry? Do you want to go to bed?
It’s 2:00 A.M. when the phone rings.
I rush to my parents’ apartment because my father is having a bad spell.
I get him settled in bed, get him calmed down, all very
Marvin’s Room. He looks at my mother and says, from his delirium, “How did Colin know how to make the spooks go away?”
“The spooks? What spooks? There are no spooks.”
Have you ever noticed that dementia makes a person rather attractive to talk to? You can’t stop yourself. It’s kind of obsessively fun to argue them out of their delusions because, for once, you know you’re right. There are no mauve bats flying barrel rolls in the room.
Sometimes, on lovely days, I offer the park or the woods, and he makes me take him to depressing discount stores. He wants to buy a watch. He has dozens. He wants some writing equipment, but the work he is determined to write—some last gasp having to do with Dante—never comes to anything more than a few words scribbled here and there as his mind melts into a puddle.
“I’ll pick those up for you,” I say. “While you have me, why don’t I take you someplace pretty, so you can get some sun and fresh air?”
He looks dejected.
“That’s not fair,” he says.
Exasperated, I load him and the wheelchair into my car and head off for Service Merchandise. He looks and looks at watches. He buys a certain one and takes it home. But it is the same as all the others. It shows time running out.
Two years after his death, I tear a quadriceps tendon playing soccer and Life finally teaches me what I refused to learn back then. My friends are willing to fetch me anything, take me anywhere; but one day, a couple of weeks after surgery, I sneak out, stagger to the corner in my full-leg brace before the neighbors see me and offer to help, and I catch the bus, go to a coffee shop, and buy myself lunch, just for the existential thrill of asserting myself in the consumer economy. I take out my wallet, pay the bill, get the change. This is very fulfilling, in a way I had not expected, as if it restored substance to the phantasm I was becoming.
In a capitalist age, I spend, therefore I am.
That’s what my father craves. The ritual of the transaction.
By the time I understand this, he is long gone, and I remember, with rue, how edgy I was on those sunny days when I thought I knew what he needed better than he did.
“Is he in pain?” the aide wants to know.
“No,” I tell her distractedly. “It’s something else.”
We are standing in my father’s bedroom. He sleeps more and more, and from his sleep he issues peculiar sounds. Short wordless vocal bursts in a single tone, easily mistaken for a groan, but closer—in their sporadic pattern and duration—to the gentle undersea songs of whales. What do whales say? “I’m here.” “You’re there.” “You’re there.” “I’m here.” Perhaps that’s what my father does, from the half-sleep of life’s end: announces himself to the world, trumpets out a hopeful sound, and listens for what bounces back. He gives a hoot.
When he gathers his wits, he often wants to talk—heretically—about God. In a public park, as I push him in his wheel-chair, he suddenly stirs, rears up, and pretty much bellows, “What I don’t understand is, if God wanted a son, why didn’t he just make one? Why did that poor girl have to get knocked up?”
Today is the Super Bowl. I have rooted for the Green Bay Packers since I was about fourteen, which means I have endured twenty-five years of really awful teams until quite recently. I never had the chance to see them get near a Super Bowl until last year, when I was assigned a Sunday night radio show, so I missed the whole thing.
Care for the dying is as amenable to crass bargaining as any other human activity.
“I want to watch the Super Bowl tonight,” I tell my mother. “I want to put in my hours this morning and this afternoon. By nightfall, I want to be replaced by paid health aides, hospice volunteers, or those guards in The Wizard of Oz who march wearing busbies and appear to be singing ‘Oreo.’ I am determined to watch the Super Bowl in an undisturbed setting where I can concentrate, yell, whoop, weep. Where I can be in the presence of similarly dedicated NFL fans and not people who are checking their watches and demanding to know why anybody cares about all this organized savagery.”
Even as I speak these words, I am dimly aware that I am tempting the gods to gainsay me. I work with hospice to line up extra coverage and try to batten down every hatch that might fly open during the game.
And what happens? My father suddenly takes a turn for the worse, so much so that he cannot be left alone with my mother anymore. All of the coverage vanishes into the Mists of Healthcare.
Joey and I find ourselves waiting for kick-off in my parents’ apartment, very possibly the worst place I can be, because (a) I may have to attend to my dad or take him to the bathroom at any moment; and (b) My mother disapproves of football and, during my childhood, would not allow us to watch it in the house because it led to excited yelling, which she also did not allow.
So Joey and I are watching, hunching down, and trying to be very quiet and dignified, although I am wearing a foam rubber Cheesehead.
From a spot somewhere behind us I hear my mother say, flatly, emphatically, to no one, “I hate Super Bowl.”
Jeez.
He always claimed to be an atheist, but he was way too engaged for that. He secretly wanted to be a heretic.
But it’s time-consuming. And you have to go to meetings and listen to doctrine. I think my father wanted to be a heretic, not in some church, but right in God’s face. I think he wanted to hang around God’s office and argue with God about important stuff and get on God’s nerves.
Sean Kennelly, a former Catholic priest, late of Ireland, one parish over from Donnybrook, shows up at my parents’ apartment.
He has been phoning. He’s a hospice pastoral counselor. He had to give up the priest thing so he could get married. He is a holy man but also full of the devil, in a nice way. My mother won’t let him anywhere near Dad, but I can’t make out whom she’s protecting: Kennelly from my father’s blasphemies or my father from any sense that this is last rites. Now Sean has decided to beard the lion in its den.
“Mrs. McEnroe, will you not let me up?” he says on the intercom.
“No, I’m afraid now is not a good time.”
“That’s what you always say. I’ll only stay just a minute and say hello.”
Such is Sean’s charm that it works even on a squawk box. He gets in somehow. He and my father have a few talks, which they both seem to enjoy.
“I’ve seen the type before. ‘I’m an atheist, praise be to God,’” Sean confides to me in his brogue.
My father’s moments of clarity come less often.
I bring over a videotape to watch with him. Primal Fear with Richard Gere. We watch three minutes; he nods off. I stop the tape. He wakes up. We watch ten minutes. He dozes. I stop the tape. He perks. We watch. Snooze. Stop. Wake. Watch. Now he is deeply, deeply asleep. I stop the tape and grab something to read. It seems wrong to watch without him.
Suddenly he stirs, shakes his head.
“What happened to Bang Bang Fuck You?” he demands.
“What?” I must be hearing things.
“Bang Bang Fuck You.”
I stare at him.
“The movie!” he says, exasperated.
I start it up again, but now I can’t stop giggling. Now I’m laughing so hard my eyes are watering.
I’m picturing the Oscars. “Accepting the Best Picture award for Bang Bang Fuck You is its producer, Leonard T. Salink.”
Or the video store. “Do you have Bang Bang Fuck You?”
“All our copies of Bang Bang Fuck You are out right now. Try again tomorrow.”
The Good News: You are a better person than you probably think, particularly if you think you could never deal with, say, your parents’ senescence if said senescence led you into the world of Depends Undergarments and other unpleasant facts of late life. You can.
Look, I’m a chicken. I speak as one who, going into every squeamish turn, said, “I can’t do this,” and then did it. I gave showers. I changed adult diapers. If I did it, anybody can. A tip: Buy some medicated VapoRub-type stuff and smear
some under your nose when you run into really icky situations. It’s the Sandwich Generation’s magic mushroom, a Castanedan mind-altering substance.
The Bad News: Even as the physically gross stuff turns out to be less paralyzing than you had feared, the emotional stuff is far trickier, and there is no VapoRub for the soul, unless you count alcohol.
Today, for instance, a hospice nurse and I have to “break” my mother on the subject of nursing homes. First we convene everybody in the living room: Mom, Dad, me, and a few hospice people. We discuss the way the apartment is becoming more and more dangerous. My father wakes in the night and wants to leave the hospital bed we’ve had trucked in. The only person there is my mother, who cannot support his tottering weight.
We go around the room, soliciting comments about other options, gently steering my parents toward the nursing home. Each time my father has the floor, he discusses his distaste for the confinement of the hospital bed with its high sides.
“When I want to go to the john, I have to get Barbara to help me, and the whole thing is a nuisance,” he complains.
“We don’t want you to get out of bed on your own,” says a nurse.
Around the room we go, discussing future care options, the likely course of the disease, the advisability of lining up a nursing home placement right now. Back to Dad. Anything else to say?
“Perhaps a ladder could be attached, so that I could climb in and out more easily,” he suggests.
“No,” I say, “the purpose of the bed is to keep you from getting out and hurting yourself.”
He shrugs.
The next time we come back to him, five minutes later, he brings up the bed again, as if it were a fresh topic.
“Bob?” asks the hospice nurse.
“I’d like to say a few words against that bed in there. It’s medieval!”
Later, the nurse and I talk quietly with my mother, while Dad sleeps.
“It’s the only way. He’s not even safe here anymore.”
“I can’t. I made a Commitment to keep him at home.”
My Father's Footprints Page 2
