Karen Brown | Longreads | November 2017 | 14 minutes (3,613 words)
“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.”
“Ok, 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.
Are we selfish for allowing him to make these choices? Possibly. But he insists, as he always has, that living for his children’s and grandchildren’s happiness is what gives his existence meaning. We hope that’s true. This is a man who spent his career as a professional decision analyst but always picked the worst-colored ties.
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 rollator, 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 quietly sipping his coffee in bed, the dog at his feet. He eats and drinks almost nothing, but he can usually get down a mug of hot milky drink.
My father is scheduling his death. 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 looks up at his bookcase, the one he’s been ignoring for a few decades 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.”
He gets an urgent look on his face. “I wanted to tell you — in the next room, I have a complete set of ‘great books’ — I think there are 33 volumes — all the classics. Shakespeare too. I’m particularly sorry not to read those. Maybe you can.”
I suggest we find a book to read aloud to him over the next few weeks.
We chose 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.
I’m at the kitchen table trying to figure out which insulin pen hasn’t yet reached its expiration date. I’m also making my second Nespresso of the morning. 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. He used to be able to use his cell phone to call the house landline, but his fine motor skills got too shaky to dial the right number.
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 — as long as we have the volume up and the remote monitor nearby. My mom once heard his ghostly voice calling out in pain from the upstairs bathroom, where I’d left the monitor by accident. I almost knocked over the dog running downstairs to respond. I’ve taken to keeping it tied to my belt with a string.
Of course, he loses something with this method: privacy. He forgets that any conversation he has — on the phone, or with a visitor — is also 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. She 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 that he can’t come upstairs, she has no choice.
“How will you fare after I’m gone?” he asks my mother.
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 entertainment news on TV, he likes to read and write and think deeply about his profession. They have separate bank accounts. But they are still quite 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.”
“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. You shouldn’t feel guilty. I’m glad you’re going.”
Then quiet. I finally turn off the monitor.
We have a nighttime routine. After he’s taken all his pain medication, gotten washed by the caregiver, gone through the trying routine of pricking his nearly-bloodless finger to test his blood sugar, and eaten the one — or maybe two — bites of whatever delectable pastry my mother bought in vain from what used to be his favorite bakery, it’s time for mystery hour.
The only TV stations he watches — perhaps the only numbers he knows how to punch on the remote — are the three PBS stations you can get in the D.C. suburbs. And it seems that the only shows they air after 8pm are murder mysteries from England and Australia.
My father has 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.
I usually watch from my perch on the double mattress we set up next to his hospital bed, but occasionally, since he’s so small now, I can fit in the crook of his arm and lie next to him.
That’s how we watched the Prime Suspect origin story of DCI Jane Tennison. And the light-murder stylings of Miss Fisher’s Mysteries. The tortured adventures of priest-turned-detective Grantchester. And — our lucky break — an old airing of Inspector Morse, our favorite Oxford intellectual policeman. The actor, John Thaw, who died in 2002, looks eerily like my dad.
This episode was a good one — and remarkably, one I hadn’t seen before. An academic had been murdered, of course. (As Dad pointed out, there are more murders on this TV show version of Oxford than there probably were in the whole of England, ever.) There’s tense but affectionate banter between Morse and his sidekick Lewis. About an hour in there was a second murder, of the main suspect (who else?). And then the words: To Be Continued.
The second part would air the following Wednesday. We didn’t have to say out loud what we were thinking: that hopefully we’d both get to find out whodunnit.
For the past year, my teenage son has taken one or two items of his grandfather’s clothing home every time he visits. It’s weird to see my boy wearing a track suit or Hawaiian shirt that Dad spent so many years shuffling around in. My mother gets frustrated — “I bought those for Rex, and he hardly has any clothes left” — but dad doesn’t mind; he loves Sam wearing his clothes.
Dad’s tchotchkes are a bigger challenge to give away. He has awful taste in souvenirs. There’s an oversized 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.” In it, a quick-acting corkscrew, never opened. A prickly rubber ball that lights up when it bounces. 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. (But I want the corkscrew.)
He wants me to find something that my daughter might like. “We had some lovely conversations on her last visit,” he says. “I feel like I really got to know the young woman she’s going to become.” I pick up a couple of hand-sized metallic exercise balls. I’m not sure she’ll know what to do with them.
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 said.
We will not be donating that box to Goodwill.
He decides to try dialysis one last time. The kidney doctor had called our home after the first appointment Dad missed and practically begged him to go back. It seems the medical specialists and the hospice team are on competing tracks. The kidney doctor’s job is to keep him alive as long as possible; hospice wants him to have a good death. Sometimes those two things are mutually exclusive.
I find myself listening to my parents talk, for the first time in a long time, about life, death, and marriage. ‘How will you fare after I’m gone?’ my father asks my mother.
The transfer — from bed, to stairs, to wheelchair, to car, to medical center, to dialysis chair — takes about an hour each way with the help of his loving caretaker Rachel. She’d agreed to work late on her last day before a beach vacation with friends, a vacation she almost turned down because she didn’t want to leave my father. (A caregiver with her level of empathy is not the norm, I have discovered.)
It is a rough four hours. First the pain in his neck and back. Then his stomach. Then my panicked phone call to the hospice nurse, who says I can give him another Oxycodone. An hour later, still squirming, another panicked call: permission to up his dose.
The technician, named Sonia, originally from Afghanistan, is kind. She shows me how to follow his blood pressure on the monitor so I won’t worry. Her effort backfires. His blood pressure crashes, and I have to call out for help. I definitely keep worrying after that. (But thank goodness for Sonia, who keeps tearing up as she realizes how close to the end my father is.)
In the last half hour, when he’s finally had enough drugs to tolerate the pain, after his blood pressure has stabilized, he asks me to come closer so I can hear his rasped questions. “Tell me about you. Are you working on anything interesting?”
Well, actually, I tell him, I’ve been working on a few personal essays. I have a new one — a relationship story I am gearing up to submit to the “Modern Love” column in the New York Times. Would he like to hear it?
I pull it up on my computer — and read aloud the 1500 words of heartfelt emotions and memories. When I am done, he is quiet.
“Dad? You okay?”
“Yes, sweetie, I’m fine.”
“Oh. The essay is done.”
“Uh, what did you think?”
“Well, it was nice, but seemed a bit ‘so what.’”
Leave it to a dying man to tell you the truth.
This really will be the last time he goes to dialysis. I will not do it to him again. Even without the bad essay.
On the first morning he knows his head need never lift off his pillow again, he exhales slowly and asks me to hack into his email account.
I help him write farewell notes to doctors, old colleagues, admired friends, 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.
Kickstart your weekend reading by getting the week’s best Longreads delivered to your inbox every Friday afternoon.
Some reply immediately with sweet messages, hoping to call. Others 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, to me at least: “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 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.’”
After dinner with mom, I am eager to get back to Dad. 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. Then he adds, “I think I’m losing my inhibition in my decay.”
“Have you ever had any?” I say.
Another kind, hoarse laugh.
My youngest sister is sleeping in the extra bed, jetlagged. She’s just come from California to help. My dad wakes up when I enter. The sliding glass door to his room is slightly open, to let fresh air in. (We have ignored my mother’s insistence that we keep the air conditioning tightly contained)
My father can see the geese on the water. It took us three years to think of taking down the tall plants outside his room that were blocking the view of the lake. (He had my son plant them one summer, “to give him something constructive to do.”)
The morning before I leave on a four-day work trip, I bring him a milky coffee. I feel conflicted about going, as I know 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, some soul-searching calls with my best friend, and assurance from my father himself (“I would hate for you to miss a professional opportunity.”), I decide to go.
Dad waited for me to return from my trip, then he waited for my children to arrive for the weekend. He waited for my husband to order new guitar strings from Amazon.
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.”
“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 waited for my husband to order new guitar strings from Amazon. (He wanted to serenade Dad one last time.) And lastly, he waited for his old colleague Andrew to fly in from L.A.
Andrew was part of our family lore, a brilliant eccentric who was allies with my dad when they were both spearheading a new decision-analysis curriculum at Harvard. They hadn’t seen each other in more than a decade, and we were all surprised — touched — that it was so important to Andrew to see him before he died.
It was important to Dad too. In fact, the day before Andrew’s Monday visit, he asked me which day it was.
“Really? I thought it was Friday. So I only have to last one more day?”
They talked off and on for almost five hours, the last deep conversation Dad had with anyone. But the best part was Andrew’s parting gift: After they hashed out a long-ago professional feud that Dad had with his arch nemesis, a man named Ron, Andrew — who is smarter than everyone — declared that, if they were to compare Dad’s accomplishments and integrity with Ron’s, Dad would win hands down. “No contest.”
That would turn out to be Dad’s last good day. He wasn’t expecting anyone else.
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 John, my two younger sisters, and the hospice nurse — a petite sparkplug 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.
The morning before I leave on my four-day work trip, I feel conflicted about going, as I know there’s a chance he may not be around when I return.
My sister and I held his hands all night. After calling in two emergency visits from the 24-hour palliative nurses, we hit upon the right dose of morphine 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 through his discomfort, “I’m in your hands.”
Over the next eight or nine hours, as he breathed quickly and loudly, his mouth open, 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 other 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 were 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 5pm. 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.”
“Are you sure?” I had to ask. That could have been the journalist in me. But it was probably just the daughter who couldn’t quite believe it was true.
“Yes, I am. I’m so sorry.”
It’s funny what people want to take of the dead, to keep the memories living. A few days later, after the equipment company came for the hospital bed, 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.”
Rest in Peace, darling dad.
* * *
Karen Brown Karen Brown is a writer and public radio reporter based in Western Massachusetts, with a particular interest in health and psychology. She has contributed stories to NPR, The Boston Globe, The New York Times, and other outlets. Her father, Rex Brown, was a decision analyst and devoted father of four.
Editor: Sari Botton