Mothering my dying friend

ST ILLUSTRATION : MIEL
ST ILLUSTRATION : MIEL

Caring for a dying loved one is like caring for a baby - intimate, frantic and tedious, but always an act of devotion

In a Venn diagram of tending helpless people at the extremes of life, the circle of caring for a dying person overlaps almost completely with the one for caring for a baby.

Both are repetitive, intimate, often gross, sometimes funny, weirdly frantic even as they're crushingly tedious, and a total act of devotion.

In the non-overlapping part of the end-of-life circle, there's pain, grief and despair. There is movement not forward, towards consciousness, but backward, away from it. And for all of your endless patience, there is nothing at the end. Just death, and your only job is a kind of mothering right up to the lip of the abyss.

Many people already know this, but I didn't. Ali, my 47-year-old best friend of 44 years, was dying of ovarian cancer in a Coney island hospice, and I was a death novice.

I could flip through my mental scrapbook of our lives together - past stitching the last-minute buttons to her wedding dress, past teenage afternoons in Postermat on Eighth Street, past even the fold-and-seal letters from camp, all the way back to our Snoopy stuffed toys, which were often sick and had to be bandaged in Kleenex and fed bits of gingersnap, their feverish, grimy plush cooled with ice cubes while we watched afternoon reruns of Emergency!.


ST ILLUSTRATION : MIEL

But as a grown-up, I hadn't really been through it.

It was hard even before it got worse than we could have imagined, back when we thought it was as hard as it could get. Ali was in the hospital still, and she was in so much pain. She needed to be massaged and held and to eat cold chunks of watermelon by the quartful. She had a horrible, leaking tube that emptied the contents of her stomach into a bag and left behind a deadly thirst. The more she drank, the more the tube drained away, and the thirstier she became. It was mythological in its punishing irony.

For a while she craved a particular kind of German mineral water, then strawberry Popsicles, then San Pellegrino grapefruit soda. Since my babies were the kind that nursed every 20 minutes, this was familiar to me - the constant guzzling, as well as the constant thrum of doing that often drowns out the bigger existential story.

I'd announce that I was going out for a minute of fresh air, only I never would - there was never time - even though time passed excruciatingly slowly.

When you're pregnant, you hear that your baby will sleep for 20 hours of every day, but then somehow the minutes never clump together into any meaningful stretches. It was like that with Ali.

She needed dry pyjamas, fresh sheets, more ice, a bite of yoghurt. She needed a new drainage bag, a clean lap pad. She needed blood drawn and potassium injected and Ativan added to one of her half-dozen drips.

It took an hour for her husband, David, and me and a nurse to get her into a chair by the cracked window so she could see the sunset, feel the breeze; only by the time we got her there, she needed to return to bed.

David and I made dirty jokes about Ali's thigh-high medical compression stockings, and she laughed. We cried in each other's arms, and also were bored.

The hospice was better, but also, of course, worse - because wellness had officially abandoned her future and because Ali was sicker.

When I visited, I volunteered hourly to get ice from the machine down the hall because I could not always bear to sit there - but then I couldn't stop myself from looking into all the open rooms, the dying people so greyly flat in their beds they were already like ghosts. There was a baby, too, dying in a crib. It was unspeakable.

There was the night I slept on the foldout couch, when Ali cried in my arms because her little son was sick at home with his dad, and she was not there to care for him - would, impossibly, never again be there to care for him - while she drank raspberry-apple juice and a beige protein shake.

"My heart is breaking," she cried, gulping the blue Gatorade, after which she said, through her tears, shrugging: "That was actually really good." We laughed because the lofty and the base can come into such absurd proximity.

Later, when words failed her, Ali squeezed my hand and, eyebrows and shoulders raised in alarm, studied my face. My kids did this too, when they were small - looked into my eyes to see if they were safe. I remember an elevator trip, the doors opening to a brick wall between floors, two little faces swivelling up to ask, wordlessly: "Are we safe?"

We are safe, I beamed back at them, because we were in it together, what did it really matter? You are safe, I beamed at Ali now, smiling and smiling, nodding in my maternal way. "You're good, you're perfect," I said all the time. "You're doing everything right."

And we weren't in it together, and it didn't mean anything meaningful, but she would grin and her eyebrows and shoulders would drop down again. It was like a trust fall, and also it was life and death.

The big, cheerful doctor came by daily - the one who looked exactly like a yarmulked James Gandolfini, and whom we called, behind his back, Dr Soprano - and my friend talked to him like the child she was becoming. She had wanted to go away one last time - first, ambitiously, to Florida, and then, less ambitiously, to a hotel on the Upper West Side - and when he finally said no, it wasn't possible, the trip would be a nightmarish disaster at best, she was crestfallen.

"Why?" she said to him, to me, after he left. "I don't understand. Why can't I?"

I thought of my kids, small still, watching the rides being taken apart before they'd even realised the carnival had come to town. Why?

Ali fell to the floor once in the middle of the night, and I had to sit with my fainting head between my spineless knees while the nurse and Ali's braver friend Amanda did the heavy lifting. Years ago, when my son knocked out his two front teeth, I muttered consolingly and mopped up blood and filled a bag with ice and then, when his father got home, knelt on the bathroom floor with my forehead on the tiles.

In the hospice, I lay with a pillow over my head, ashamed. Until I freaked myself out thinking about all the dying heads separated from me by only the thin casing. All my petty cowardices!

O death be not proud. Also, be not so messy and exhausting. Live as if you're dying would be a better sentiment if dying weren't so awful.

But just as you are too busy diapering the baby and mopping up curdles to feel the constant radiant ecstasy of your gratitude, you cannot sustain the high note of tragedy, even though everything else feels frivolous. On the eve of Ali's last living night, she wouldn't close her eyes. David was home, caring for their children, and her parents and brother had returned to their apartments, but sometimes she imagined they were all there. She was like a kid who didn't want to miss anything - convinced that the Monopoly board and jelly beans were going to come out the minute she was asleep. Or like a person who didn't want to die.

"Close your eyes!" I said, Amanda said. We wanted her to sleep. We were so tired! We filled and refilled her drinks. She pointed to them one after the other - six glasses on her tray, more broken underfoot since she was too weak to hold them, but refused to drink from plastic - and we named them while she nodded approvingly, rattled her ice.

A few months later while I was walking on the beach, a lodged shard of glass from that night would finally come out of my heel and I would be spared at least that particular walking-around pain.

"What's the name of the guy... with the hoog?" Ali wondered. "Hoog? Woozy." We didn't know. She craved sweets, wanted her cracking lips smeared with balm, needed a dry nightie. She was so cold. Her teeth were huge, her hair sparse. She had become a cross between a baby and a million-year-old woman.

"Is there any champagne?" she asked, as the sun rose over the Atlantic, and Amanda sighed like a weary mother. "It's 6 in the morning, Ali. There is no champagne." "Tell me that's not the last thing I said to her," she said to me at the funeral, and we laughed like crazy people.

After I had my first-born, I was stunned by the basic fact of birth. "That person!" I would say, clutching my husband's sleeve: "That person, that one, all of those people, every one of them was born!" I was not exaggerating my wonder at this fact. Every living human represented a pregnancy, a birth, a groaning hook-or-crook launch into the world! The universal can be so startling.

I had a similarly banal revelation after Ali died. "You and you and you," I thought, on the Amtrak train. The teenager on his iPhone, the woman with her sandwich. My old parents, me, even my own children. Everybody was going to die, with or without six different drinks in front of them.

You already know this, but I hadn't understood it. I hadn't understood that you're stuck loving only hearts that could stop beating, that will. You love them with your own stretched and scarred organ, the one that might pound on long after, like a dumb animal. Like it didn't get the memo about the heart and what the heart can take.

NEW YORK TIMES


•Catherine Newman is the author of the forthcoming memoir Catastrophic Happiness.

A version of this article appeared in the print edition of The Sunday Times on December 06, 2015, with the headline 'Mothering my dying friend'. Print Edition | Subscribe