David Winner on the rules for oxygen under hospice care and the still moments in his mother’s final days.
What the internet said wouldn’t happen, happened. My mother started dying, not slowly from complications like pneumonia or a broken hip but quickly from the Parkinson’s she’d been suffering from since the Clinton Administration.
She was barely alive by the time my wife and I made it from New York back to the house where I grew up in Virginia. Doped up on morphine and Ativan, she lay struggling to breathe in a hospital bed in the guestroom with the blue rococo-patterned wallpaper that she had chosen in the seventies.
At some ineffable moment in the last week or so, she had plunged from the “transition to hospice” status necessary with a disease that can take its time killing you to the real deal, as she could not have more than days to go.
Hospice was taking care of everything, but I didn’t understand why they weren’t giving her oxygen. Several years before, I had watched it ease my father-in-law’s dying. He had lung cancer and emphysema, while my mother’s lungs were supposedly fine, but she gasped more and more painfully, her frail body quivering each time she breathed.
While searching remote corners of the Internet, I had found the rules for Parkinson’s patients under hospice care and learned that, while you can’t feed them intravenously or shock their hearts back to life, oxygen is allowed at least at night.
My father, a private, somewhat reclusive man of nearly eighty whose life had been turned completely upside down by my mother’s illness, was flustered at first by the suggestion that we weren’t doing everything we could for her but pulled himself together and called Joan, the primary hospice nurse. Joan agreed to check out my mother and consider giving her oxygen when she came by the next day. Which only partially comforted me because it meant my mother would spend another night, perhaps her last, breathing on her own.
Several times I woke up that night, looked around the dark room and fought back the impulse to check on her though there was nothing I could do, and I knew her caretaker would wake me if she were about to die.
Her breathing worsened overnight, but I woke up to find she was still alive.
Maybe it was the bravery of getting from Ohio to New York while still a young woman, maybe it had something to do with the sharp ending of her first marriage, but my mother had a dark but preternaturally sharp sense of human nature. When my college girlfriend asked for a month break from our relationship, then called after three weeks to cheerfully suggest we get together, my mother listened to my hopeful talk on the phone then sighed wistfully, preparing me as best she could for the eventual outcome.
In her last decade, as Parkinson’s was taking its toll on both her body and her mind, she made a sort of grand tour of Asia. I wasn’t with her on her journeys to China, to India, and to Japan, but I imagine her rallying forward through temples and hotels, not knowing exactly where she was and whom she was with. When later she complained of being no longer able to travel, it did no good to console her by listing the journeys already under her belt. She’d just look distractedly into the far distance at the claustrophobic future she saw in store.
Her final precipitous decline started in September about two months before I had returned to Virginia for her dying. In August, she had walked with assistance, recognized people, and eaten mountainous desserts, but only weeks later she was wheelchair bound and losing her appetite. By October, she could barely sit up and started to call plaintively for her younger sister, whom she hadn’t seen in years, talking urgently about a baby lost on a mountain who may have been me, her only child.
Every few days, I would manage to call home when she was conscious enough to talk to me. One of her caretakers would wheel her to the phone and explain that David was on the line. It being central Virginia, and her caretakers being working class, they called her “Miss Vi,” like in a Tennessee Williams play.
“It’s David, Miss Vi, talk to David on the phone.”
Sometimes she would just mutter softly and incomprehensibly. Occasionally, she’d answer basic questions. The weather was “murky.” She was “drowsy.” During what turned out to be our last conversation, I asked her, ridiculously, what she was “doing,” and learned she had been “working on a draft” of the book on portrait miniatures that had actually ground to a halt about two years before.
Towards the middle of October, the nurse practitioner whose garden abuts my father’s suggested the “transition to hospice,” and the Hospice of the Piedmont quickly reconfigured her world. They switched her to mushy food and brought over a cushioned wheelchair from which she barely moved.
I had been concerned for months about when exactly her neurologist would take her off Cynamet, the artificial dopamine that remains the front line of Parkinson’s medication. That decision signals the end of “advanced Parkinson’s” and the beginning of “end stage Parkinson’s.” When I worried about my mother’s dying, I took comfort in her not having sunk there yet. I imagined her being brought to the doctor or the doctor being brought to her when that moment occurred, a hushed and ritualized consultation.
But just a few days into the hospice regime, my father casually mentioned that Joan had already decided to wean her from it. I insisted that neurology be called, and they retroactively confirmed what seemed like an obvious decision.
After that, her decline steepened even more. No longer able to sit up, she was carried into a hospital bed in the guestroom, where she ate smaller and smaller spoonfuls of food and spoke fewer and fewer words, as, apparently, the child that her younger sister had held hostage on a mountaintop had passed hopelessly away.
Then came pains that no one could explain, which made her yowl when she was sponge-bathed in the mornings. Then morphine.
My thoughts about her dying twisted and turned in on themselves. The Republicans who had fought to keep Terry Schiavo alive were opportunists. I remembered watching Al Pacino play Kevorkian on HBO and deciding that I believed in the right of the terminally ill to choose to die. But all that disappeared when I thought of my mother, who had stopped taking the electronic lift only days ago and would never go downstairs again. Despite the stark absence of anything resembling quality of life, I wanted her to remain in the guestroom, barely alive, for as long as the gods I didn’t believe in would allow.
The stronger, tougher part of me lucidly read the text at hand — morphine, hospice, hospital bed in the guestroom — while my Pollyannaish side clutched at straws: only very little morphine, impossible to know how long she’d survive.
I didn’t cancel my trip to Iowa City for a reading I was giving of a novel that had come out in the midst of this.
The day after the reading, I left Angela, my wife, and our friend, Harry, inside a café where they were eating breakfast and made my usual call to my father. He was not at home, and another of my mother’s caretakers, Dorothy, picked up the phone.
“Do you understand what’s going on with your mom?” she asked ominously.
I backpedaled, shakily declaring that I understood that she was much worse and that seeing her at Thanksgiving in two weeks might shock me.
Dorothy stayed silent on the phone for a moment before explaining that she had been surprised that my mother had lived through the night.
I staggered back into the café to announce that somehow, as if out of nowhere, my mother was dying.
That was followed by two days of indecision, wondering if I needed to go back to New York or straight to Virginia while my mother was still alive, even though she was barely inhabiting her body. It was a question that every moment of hedging threatened to render moot.
A little later in the morning of my second day in Virginia, a few hours before Joan was due to arrive to make her decision about oxygen, I entered the guestroom to find my mother continuing to gasp, and Val, another of her caretakers, rooting around for more morphine and Ativan to calm what was left of her mind.
When I asked Val if my mother was in any way conscious, Val brought her face close to her and asked her a question. My mother closed her eyes in deep concentration, rose briefly to the surface like a swimmer coming up from a dive, and made a kind of grunting sound in response before sinking back down into herself.
I told Val what I read about oxygen and Parkinson’s and asked her whether she thought hospice would provide it.
“I don’t think,” she said, a strain passing through her soft voice, “I don’t think they do that.”
But still I waited for Joan’s arrival with bated breath, as if her decision were somehow crucial, as if oxygen could save my mother.
Joan turned out to be a short, dark-haired woman in her forties with a slight country accent and crooked teeth. She seemed ironic and rough around the edges.
“Let’s see what we got here,” she said, checking out my mother’s heart and lungs without commenting on them.
I half expected her to say something chipper and southern like “how we doing, darling?” but she didn’t try to interact with the gasping figure in the elegant mauve shirt and recently-coiffed-looking hair.
Joan took a plastic device shaped a bit like a clothespin out of her black bag, which I recognized as a blood oxygen monitor from my father-in-law’s last years.
“Ninety-five percent,” she said after placing it on my mother’s finger.
My heart leapt when she explained it was below normal: bad good news, another sign my mother was failing, a chance she’d get some relief.
“She don’t need oxygen though.”
I stuttered something like an objection, but I couldn’t get the words out of my mouth. It was no good arguing with her, and I knew that.
Appraising my mother wearily one last time, Joan explained that there were probably only a few days to go. That was actually better than I thought. The worst case scenario, I decided to myself, would give me one more day.
By the time Joan left, it was a little past one in the afternoon. I went into my childhood room, lay down on my old bed, looked up at the ceiling, painted and repainted the same comforting midnight blue, and fell easily to sleep.
My first encounter with hospice happened several years before in southwest Florida, when my father-in-law’s tumor marker shot up, suggesting that his body was riddled with cancer.
The move into hospice care had not felt so momentous, as Angelo had been dying for almost a decade: inoperable lung cancer, incapacitating emphysema. Angela told me about it in an offhand way. It just meant that Lourdes, the Filipina caretaker with whom he loved to squabble, would get some backup.
And Angelo seemed pretty much the same the next time I went to Florida: weak and shaky in his movements but as mercurially energetic as ever.
Angelo was not, by nature, an obedient man. Or perhaps his obedience got used up as a radio operator in the Italian navy and later as a POW of the British. In any case, he paid little attention to what anyone told him and did pretty much what he felt like doing. A classic Neapolitan (from Sorrento), he made up his own rules.
His very American cancer, on the other hand, listened carefully to his doctor’s and hospice nurse’s instructions, and, by my second visit a few months later, he was pissing and shitting into a commode in the middle of the living room and dozing much of the time with either Italian television or CNN on high volume. When awake, he watched the Amazon-like Italian blonds and the Bush administration officials with little of his former bitter vigor.
“Ees a racket,” he would occasionally mutter, one of his age-old sayings.
Sitting ominously but unoccupied across from him was the hospital bed that hospice had brought over for him to die in.
Social workers and nurses dropped by a couple of times a week, smiled their practiced smiles, looked us knowingly in the eyes, and seemed impatient for the dying to get going in earnest. They’d note his declining weight and check his blood oxygen while his cancer spread its invisible tentacles.
The main hospice nurse was so morbidly obese that she could barely squeeze herself out of the car and walked with only slightly less difficulty than her patient.
Over and over, she tried to convince Angelo to move to the hospital bed as his continued presence on the couch offended her sense of decorum.
Angelo had shaken his head whenever we asked if he was in pain, but sometime between visits, unbeknownst to either of his daughters or myself, they started him on morphine.
We went to see Angelo for what turned out to be the last time in April of 2008. Arriving a day before the party that Lourdes was throwing for his 87th birthday, we found him lying unresponsive on the hospital bed. Apparently, he’d been unable to protest when the hospice nurse had moved him there.
We sat with him all evening, trying to entertain him and distract ourselves, but he remained silent and still.
Angela told a story that had something to do with alcohol, how she wasn’t “much of a drinker.”
Later that long evening, having run out of talk, she said it again, “not much of a drinker.”
“You said that,” came Angelo’s voice for the first time in hours. “You said that already.”
Around two AM, we went into the bedroom and fell deeply asleep.
At eight the following morning, I woke up with a start. Outside the sun was shining, the air was fresh and cool, but I worried that Angelo may not have made it through the night. I ran into the living room, but he wasn’t there. He couldn’t have died and been carted off while we were asleep, but I didn’t know where else he could be.
When I happened to glance outside, I saw him being wheeled around the pool by Lourdes, the death-like stupor that had descended upon him having temporarily released him back into the world. He asked what happened the night before because he remembered almost nothing, as if he’d been on a terrific bender or had been smacked in the head.
Later that week, he was well enough to greet his guests at his birthday party.
The next week Lourdes left Angelo to care for her niece’s baby and was replaced by a new caretaker, who neither fought with him nor advocated for him, the last frisson of his frisson-filled life having walked out the door.
In Lourdes’ absence, Angelo lacked the spirit and strength to resist the next attempt to move him onto the hospital bed, and cancer, defeat, loneliness, and morphine got him after only a few days of the new regime.
At some point after his wake and burial, the morbidly obese hospice nurse and her team returned to collect their medicines and take their bed back, so someone else could die on it.
Yes, they probably made him more comfortable, that primary hospice trope, but I wonder if he departed too obediently for his Neapolitan nature. He wasn’t strong enough to complain in his last days, but I think he would have been happier defying hospice and staying on the couch—his version of dying with his boots on.
In Virginia, I woke up again when Angela came into the room. Dorothy, now back on duty, had noticed something about my mother’s breathing. There were, she felt, only moments to go.
I considered the cup of tea I liked to drink in the afternoons in Virginia, how much I wanted to make it and slowly sip it before attending to my mother’s dying.
My father, Dorothy, and I gathered around the hospital bed and listened to her gasp for breath. We placed our hands on different parts of her body, staying away from her struggling torso.
Angela told me to talk to her, which I did, though it made everything feel more final.
I told her that I loved her, which was true but didn’t feel right in my mouth, as we weren’t the kind of family to say such things.
“We’re all here, darling,” said my father, mustering an age-old endearment about to be sent out to pasture.
A few moments later my mother stopped breathing.
Then started again.
Then stopped for longer.
“Is she dead?” I asked Dorothy, but my mother breathed again before she could answer.
A moment later, I recognized the death rattle though I’d never heard it before.
Then she breathed more easily and stopped altogether.
Her pulse, which Dorothy was taking, grew fainter and fainter, then ceased.
A few minutes later, Joan dropped by, hugged my father, asked rather cursorily how we were doing, and left to visit the dying, no time for the already dead.
For an irrational moment, I thought hospice killed my mother, that Parkinson’s was an innocent bystander. Hospice had eliminated the Cynamet, after all, introduced and increased the morphine and discouraged oxygen, decisions that did more than just not extend her life.
I have come back to my senses, but I still don’t think Joan’s actions were so different from Jack Kevorkian’s. If he had worked for hospice, he could have avoided jail. He could have gotten his patients into “transition to hospice,” and gone from there, not the elegant two- or three-minute departures from the HBO movie about him, but months could have been reduced to weeks, maybe days.
I’m still haunted by the memory of Val — who, like Dorothy, had stood guard at the end of many lives—delicately stroking my mother’s hair in her last months when she would start to weep.
“It’s okay, Miss Vi,” she would say, “everything’s okay.”
She’d seen the demented and dying sob before. It was normal, “okay.”
If they had given oxygen to my mother, she could possibly have had another hour, another day. She may even have had a moment of ease, her body not needing to work as hard. At the time, I would have done anything to slow things down, but now I’m grateful she died when she did. I needed to get started on the murky business of grieving.
About David Winner
David Winner’s first novel, The Cannibal of Guadalajara, won the 2009 Gival Press Novel Award and was nominated for the National Book Award. A film based on a story of Winner’s played at Cannes in 2007. His writing has won a Ledge Magazine fiction contest and been nominated for two Pushcarts and an AWP Intro Contest. His work has appeared in The Village Voice, Fiction, Confrontation, Joyland, Dream Catcher, and several other publications in the U.S. and the U.K. as well as being included in Novel Strategies, a Pearson/Prentice Hall anthology for college students. He is the fiction editor of The American (www.theamericanmag.com), a monthly magazine based in Rome.
This article originally appeared on The Weeklings.
Photo credit: Samuel van Dijk/flickr