How my father scheduled his death
My father scheduled his own death so that he could say proper goodbyes. He kept his sense of humor to the end, and showed us how to let go with dignity, grace, and love.
"How about Tuesday?" My father is propped up on three pillows in bed, talking logistics with my sister and me. We've just brought him his Ovaltine and insulin.
"Or would Thursday be better? That's a couple days after the kids are done with camp."
"Okay, let's plan on Thursday."
My father is scheduling his death. Sort of. He's deciding when to stop going to dialysis. That starts the bodily clock that will lead to his falling into sleep more and more often, and then into a coma, and eventually nothingness.
He is remarkably sanguine about the prospect, which we've all had a long time to consider. A master of the understatement, he promises it's not a terribly hard decision, to stop treatment and let nature takes its course, "but it is a bit irreversible."
If I'm honest, he's ready now to stop dialysis. It's a brutal routine for someone in his condition, incredibly weak and fragile from living with end-stage pancreatic cancer, kidney disease, and diabetes. It's painful for him to hold his head and neck up, which he has to do to get to the dialysis center. During the procedure, he must be closely watched so his blood pressure doesn't plummet.
But he's always been a generous man. He's willing to sacrifice his own comfort in his dying days for the convenience of his family, since we all want to be present at the end. If he pushes his last day of dialysis to Tuesday, then my sister can still go on the California vacation she'd been planning with her family. If he pushes it to Thursday, I can still take the journalism fellowship I'd accepted. It will also give his grandchildren time to finish up their summer jobs and fly down.
As it happens, though, when Thursday comes, he just can't get out of the house. He is practically crying from discomfort as the caretaker lifts him off the bed onto his rolling walker, to start the journey up the stair lift and into the car. I tell him it's okay. He can get back in bed. He looks so relieved when we rest his head back on the pillows.
I cancel my Amtrak ticket home to western Massachusetts and tell my husband not to expect me for the rest of the month.
A day later, my father is sipping his coffee in bed, the dog at his feet. He eats almost nothing, but he can usually get down a mug of hot milky drink.
He looks up at his bookcase, the one he's been ignoring for years as he wrote his professional tome on decision theory. "All these delicious books I've been saving for my private delectation, and I'll never get to read."
I suggest we find a book to read aloud to him over the next few weeks. We choose As I Lay Dying by William Faulkner, because even if he doesn't always follow the story, the words are nice to listen to. And you can't find a more appropriate title than that.
Later, I'm at the kitchen table trying to figure out which insulin pen hasn't yet reached its expiration date. And I'm eavesdropping on my parents through the baby monitor.
We tried different methods of communication, and nothing worked very well. My father's room is on the ground floor, and most of the house's activity is a floor above. He would try clanking the metal bar above his hospital bed with a spoon, but it wasn't loud enough and he'd be exhausted by the time someone noticed.
We finally realized the best method was the same one we use for infants. That way, when he talks or moans or coughs, we hear it on the next floor.
Of course, he forgets that any conversation he has — on the phone, with a visitor — is heard by whoever has the other device. We probably should turn it off, but then we might forget to turn it back on. Plus, it's awfully tempting to listen in on deathbed conversations.
Which is how I find myself listening to my parents talk, for the first time in a long time, about life, death, and marriage. My mother doesn't like going down to the bottom floor (she says it's hard on her legs, plus it's too musty, and a little sad), but now she has no choice.
"How will you fare after I'm gone?" Dad asks.
They are not a terribly affectionate couple, not in the last few decades. She tends to be irritable; he can get defensive. She likes cruises and TV entertainment news; he likes to read and write and think deeply about his profession. But they are still attached to each other.
"Well, I've gotten used to you being gone, in a way," she says. "For the last 20 years, you've been working on your book. I've had to find other things to do."
"That must have been frustrating."
"Yes, it was."
Or: "I feel sort of guilty, but I've booked a cruise," my mom says. "For September."
"Why would you feel guilty?"
"Because I'm assuming I won't need to be at home anymore. It just feels like I'm counting on you being gone."
"Well, that's a pretty safe bet. I'm glad you're going."
Then quiet. I finally turn off the monitor.
The next evening, after I prick Dad's nearly bloodless finger with his glucose monitor, I crawl into the bed next to him. The Great British Baking Show is on mute. He puts his bone-thin arm around me and squeezes with a surprising amount of strength."We have just enough plumpness between the two of us for a good cuddle," he says.
"Are you insulting me, Dad?"
"Oh, did I promise not to?"
We both chuckle. Looking around, it's clear his room is starting to empty out.
For the past year, my teenage son has taken one or two items of his grandfather's clothing home every time he visits — a tracksuit, his favorite Hawaiian shirt. My mother gets frustrated — "I bought those for Rex, and he hardly has any clothes left" — but Dad loves Sam wearing his clothes.
Dad's tchotchkes are a bigger challenge to give away. He has awful taste in souvenirs. There's an oversize green wine glass that says "Sexy Bitch." I once asked why he had it in his room. "Because I couldn't think of anyone to give it to."
Then there's his "treasure drawer." An oak toilet paper holder. A shell necklace he bought in a cruise ship gift shop. A beeswax candle. He wants to make sure no one fights over his stuff. I assure him that will not be a problem.
He also warns me, somewhat sheepishly, that there's a box in the closet of, let's say, "erotic" literature. "What do you think Goodwill does with that sort of thing?" he says. We will not be donating that box to Goodwill.
My youngest sister is sleeping in the extra bed, jet-lagged. She's just come from California to help. My dad wakes up when I enter the room, carrying his milky coffee. The sliding glass door is slightly open, to let fresh air in.
It's the morning before I leave on a four-day work trip. I feel conflicted about going, as there's a chance he may not be around when I return. But after a few emergency phone sessions with my therapist, emotionally panicked texts to friends, and assurance from my father himself ("I would hate for you to miss a professional opportunity"), I decide to go.
But first, our morning routine. Take blood sugar. Give pills. Try to get down some prune juice. "Would you like me to read some more Faulkner?"
"No thank you. I'm just letting my mind free-associate." And then: "I like listening to the birds."
Dad waited for me to return from my trip, then he waited for my children to arrive for the weekend. He even waited for my husband to order new guitar strings from Amazon. (He wanted to serenade Dad one last time.) On his last good morning, he exhales slowly and asks me to hack into his email account.
I help him write farewell notes to doctors, old colleagues, former girlfriends. He dictates as I type his words and click Send. He wants to let them know he's near the end, and how much they've meant to him.
Some reply immediately with sweet messages, hoping to call. Other emails are returned by daughters or husbands, letting us know that the friend/colleague/ex-lover is actually doing more poorly than Dad. His best friend from childhood died just a month earlier, but before he did — as narrated by his daughter — he cracked one more one-liner to my dad: "Looks like I've won our race to the pearly gates." My dad's reply: "But only just."
Long-ago tennis partner Vince calls to tell him two jokes. I only hear Dad's side, which is a surprisingly hearty laugh at the end of each one.
Then he tells one back. "A married couple go to the doctor, and the wife says, 'Doctor, my husband won't talk to me.' The doctor turns to the husband and says, 'Sir, is that true?' And the man replies, 'Well, I don't like to interrupt.'"
I almost missed my father's last breath because I was making nachos in the kitchen. One of my sisters called out panicked from the bottom of the stairs. "Karen. Come now."
Gathered around his bed were my mother, my brother-in-law, my two younger sisters, and the hospice nurse — a petite spark plug of a woman whom we had met an hour earlier. Her thick Polish accent had the comforting, confident lilt of someone who understood death.
We'd been on bedside vigil since the early hours of the morning, which came after an unusually bad night of pain. If I were to resent any part of his otherwise dignified death, it would be those hours.
When I was little, I used to get bad colic — intense stomach aches — and my dad would stay up with me in the bathroom as long as it took, his warm hand on my belly, and tell me, "I wish I could take the pain for you." So when I was sitting at his bedside some 40 years later, the roles reversed, I recounted that memory and said aloud, "I guess this is you taking my pain." I'm not sure that gave him much of a reprieve.
My sister and I held his hands all night. After two emergency visits from the 24-hour palliative nurses, we hit upon the right dose of painkiller and he was able to rest.
I had been so focused on getting him relief that I didn't quite realize the trade-off: that he would start to leave us, for good, in a morphine haze. That I wouldn't get a "last conversation," at least, not one that I could schedule or choreograph.
We did get last words, though. Before the morphine, he had looked at my sister and me, full of love and trust, and said, "I'm in your hands."
Over the next eight or nine hours, as he breathed quickly and loudly, eyes slightly open, but looking peaceful, at ease (please let that be so), we were told by the steady train of hospice nurses that his time was almost up. We told our children, our half-sister in Australia, his sister in England, and several dear friends, that he would likely not wake up and it was time to say goodbye, even if just in our minds.
Those of us present each took a few moments at his side, whispering in his ear. (Could he hear us? They say, at some level, he probably could.) We left him with as much love and affection as words to an unconscious man could convey. He'd always had a hair-trigger crying reflex, from Hallmark commercials on up, and if he'd been awake, he would have been bawling.
Why I thought that was a good time for a snack, who knows. My sister's holler from downstairs came at about 5 p.m. I abandoned an open bag of tortilla chips on the kitchen table and had just enough time to join the circle around his bed.
His chest started to rise and fall at a slower and slower pace, until the movement was imperceptible, and then not at all.
The nurse took out her stethoscope, put it to his chest, and said, "I'm so sorry."
It's funny what people want to take of the dead, to keep the memories living. A few days later, we took turns both throwing away trash and claiming it. One sister wanted his last uneaten Cadbury's fruit-and-nut bar. My other sister wanted an old Cambridge University T-shirt with stains on it (he was always spilling). And I wanted — of course — the green wine glass that said "Sexy Bitch."