Mr. A

An excerpt from my memoir I'm currently pitching, The Dead I've Known, about hospice nursing and infertility. This is about a patient I met early in my hospice nursing career.

Art by Tom Long

Mr. A was one of the first patients that I took over from Roseanna. I became his primary nurse, the one who was responsible for scheduling his visits, following up on his symptoms, ordering and refilling his prescriptions, and in general overseeing his progression. He lived with his wife, Dana, in a gorgeous house on a well-to-do block not too far from my house.

Mr. A was dying of cancer. He was in his late sixties, a young man by our hospice standards. By the time I met him, he was down to around eighty pounds and had metastases everywhere—his lungs, his liver, who knows where else. The failure of his liver made him jaundiced, yellow, the color of an unripe Golden Delicious apple. His hips crested up from his pelvis as he lay in his bed, two sharp points under the sheets. His cheeks and eyes were sunk into his face, a telltale sign of imminence that I would come to recognize only later. His skin was cool and waxy to the touch, inanimate. He was in constant pain. His face was set in a scowl, a miserable grimace that I never saw let up, not once. He was a walking skeleton. He was terrifying.

But more terrifying than Mr. A was his wife, Dana. As thin and gaunt as he was, she was a model of robust, rude health, like a portrait of a chubby, bosomy matron by a Dutch master. She had pale clear skin and pink, bright cheeks. She moved rapidly, with sharp, fast movements, and carried around lists—questions to ask the nurse, questions to ask the doctor, requests for refills or supplies, issues to raise. She had been a realtor at one time and tended to regard both me and her husband alike as if we were mostly worthless properties that she was nevertheless tasked with selling: she didn’t see much value in us, but she’d try to make it work anyway. She had no other choice.

I’d met them once or twice before with Roseanna while I was training, and I remember that Dana had looked at me warily when she learned that I was going to be taking over his case. Why shouldn’t she? I was a young nurse and brand-new to hospice. No one wants to be the patients that the nurse learns on. She was looking out for her husband, which was perfectly understandable. I see that now, anyway. At the time I thought she was a bitch.

It’s harsh to paint her that way, but she was a harsh person, at least when I knew her, and, really, who could blame her? For years she’d been looking forward to this time in her life when she and her husband, a banker, could retire at last. As soon as that time had come, her husband had gotten sick. And maybe he could have been cured, if only he’d caught it sooner, if only he’d heeded her counsel to see a doctor, get screened, whatever else. Now, instead of cruises in the Caribbean, she was his nurse, and he was her miserable, ungrateful patient. She’d devoted her life to this man and now he was abandoning her.

And there was something else, something that, maybe, had dogged them for their whole lives and was coming into the fore as one of their lives was about to end: Mr. A and Dana had no children. They had no family to speak of except a niece who lived a few states away, in Maryland. I had no idea whether their childlessness had been their choice or whether they’d tried, and failed, to conceive. But they felt it acutely now, I could tell, or I thought I could. Through the prism of my own involuntary childlessness I viewed every adult who was not a parent with something like pity but worse. A nauseous kind of pity, a keep-that-the-fuck-away-from-me kind of pity. They could have used a hand, that’s for sure. An adult daughter or two to ease Dana’s burden, keep her company. An adult son to sit by his father’s bedside and watch the game with. Instead, they had no one. They only had each other.

That was most terrifying of all.

Mr. A’s main problem was that he was constipated all of the time, an inevitable complication given his constant use of opiates for pain, which slow the digestive system, and the nature of his cancer. The only thing he could stand to eat was frozen grapes. That was a Roseanna thing—she was always recommending frozen grapes to people, always saying how frozen grapes would be well-tolerated for cancer patients, who couldn’t stand foods that were too pungent or too heavy. Dana had gone out at some point and bought a dozen or so bunches of grapes and put them in the freezer. I sat at the little table in her kitchen as she showed them to me. There were bunches and bunches in there, green and red and purple.

“He doesn’t like them anymore,” she said. “He eats one a day. Maybe two. Tell him he needs to eat. You’ve got to tell him.”

I nodded. Food is one of the biggest issues for families taking care of hospice patients. Patients who are dying don’t usually want to eat, and even patients who are barely responsive, lying in bed with their eyes closed, seemingly asleep, will somehow reflexively clench down when the caregiver tries to sneak in a spoonful of water, or even a dissolvable pill like the kind we use. Sometimes patients will ask for something highly specific, a certain pastry that they used to like, or a burger, and then, when the spouse or daughter or son runs out to get it, they take no more than a nibble before they push it away. “They’ll starve!” is a common refrain from families. “They need energy!” is another. But they don’t. Their bodies are slowly shutting down, and that includes the parts of their body that metabolize food. They don’t need it. They don’t need anything where they’re going.

But food is love, and Dana loved her husband, even though he was driving her crazy at the moment. The forty dollars of grapes in her freezer proved it, to me and to her and to Mr. A. Her love, as far as she could tell, was going unrequited. And she was pissed.

I remember that first day there, sunlight streaming through the kitchen window, nodding my head solemnly at Dana as she tried to come to grips with her husband’s new low—refusal to eat more than a few bites or sips a day. Had he deigned to eat a grape in front of me, I felt as if I could have watched it slide right down his throat, could have traced its path beneath his thin skin along his intestines through his stomach.

I followed her into the living room. She ushered me towards him and then disappeared, presumably so I could relay her message about the need to eat the grapes, and plenty of them.

He looked like a zombie, lying there. Grey, bone-thin. I said the first thing that popped into my head.

“Do you watch that show The Walking Dead?” I asked.

Even as I said it, I shuddered: What a fucking moron! ‘The Walking Dead,’ that’s the show I ask him about? Why, because he looks dead? Enough with the dead stuff! He’s not a zombie! Think, moron, think!

But I was new. I couldn’t think. His closeness to that other side, to the world beyond, made me panic. It made his wife panic, too. It made us all scared, all of us who were securely, at least in our minds, in the land of the living. And my panic made me dumb. So the thing I said next was even worse.

“I can’t wait for the next season, can you?”

I don’t remember what he said, if anything, but somehow, as the weeks passed, he grew to accept me in his home, even if he didn’t like it. I called him Handsome when I addressed him, and he liked that. He had, once, been a seriously handsome man, and Dana had been a gorgeous woman, as the photos around the house proved. The man he’d been was still in there, still vain about his looks, his prowess. And the woman Dana had been was in her, still, too. That was another thing, something she and I and he all understood but couldn’t say—when this was over, when he was gone, she would get her life back. She could go out, see friends, travel. She could do whatever she liked. She would have traded it all to have him forever, but that wasn’t an option. Her happiness, her beauty, her life would come back to her, eventually. His illness was keeping her from that. He knew it. So did she.

Whatever meager food or drink Mr. A did eat became lodged in him and caused him enough pain to cut through the tremendous analgesic power of the morphine we gave him. The only way he could have a bowel movement and relieve that pain was with an enema. And so, my primary job, as Mr. A and Dana seemed to regard it, was to bring him one—he’d let me do no more. He’d rip it from my hands and shuffle to the half bathroom down the hall like a man possessed, gripping the wall for support, while Dana and I followed, both of us wringing our hands, begging him to let us help him, to keep him safe. “Leave me alone!” he’d shout and slam the door.

To allow someone in Mr. A’s condition to walk by himself to the bathroom and then shut himself in there was against everything I’d ever learned in nursing school and the ICU about patient care, and risk, and protecting my license against malpractice. Mr. A was heavily medicated and extremely weak and thin, truly no more than skin and bones—cachectic, was the medical term for him, meaning severe muscle loss and weight loss. It’s the adjectival form of the word cachexia, from the Greek kakhektikos, meaning in a bad habit of body.

Mr. A’s body was in a bad habit, alright. He looked like shit. He teetered around, his ribs and the bony wings of his pelvis, the iliac crests, clearly visible beneath the skin. He might fall at any moment, and I would be responsible, I imagined, as the meek nurse who let him walk around unassisted, who stood by and did nothing. But this wasn’t the ICU. This was Mr. A’s own house, and this was Mr. A’s own death, and Mr. A’s own bowels, and so he walked around, his ass bones jutting out through sweatpants that hung from his waist, and I watched, forbidden from assisting him, forbidden from doing anything other than trailing behind him with my arms outstretched like a fretful, safety-conscious Frankenstein, saying, Mr. A, watch that rug, Mr. A, here, take my hand, please. Visit after visit I watched this fading, sunken specter of a man pull himself up from bed and make his way to relief, propelled by pain and pride in equal measure. I waited outside the bathroom door, listening for a fall or a call for help or for some too-long silence that would mean something else had occurred, something worse, or maybe much better, depending on your point of view.

It’s a strange thing: even though we were, essentially, watching while Mr. A died a slow, painful, drawn-out death—the type of death that absolutely no one wants—the idea of him bashing his skull against the gleaming granite bathroom counter seemed profoundly horrible. But would that have been the case? For whom would that have been worse? Who wouldn’t choose a fast death from a massive cerebral hemorrhage, maybe following a short coma, over a tortured existence of pain and suffering and indignity? At least if he cracked his skull, that would be the end of his enemas. But the calculus of what constitutes a good death, like the calculus of what constitutes a good life, is mysterious.

I dreaded going there. I felt useless, or less than useless. Annoying. Intrusive. I wasn’t helping anyone. Mr. A would barely let me touch him, and Dana was even worse. It was as if she blamed the entire course of Mr. A’s illness and everything that was wrong with his care on me. If I said I’d arrive at 10 a.m. and I didn’t arrive until 10:15 a.m., having been held up by my previous patients, she’d scowl and mutter about the time—did I realize that she’d been waiting? Never mind the fact that Mr. A hadn’t gone anywhere in months and Dana only ever left the house to buy more grapes and Ensure, the protein- and calorie-rich shake that all my sickest patients drank. If I’d ordered more gloves and wipes but nothing had come in the mail yet, she questioned me: had I really placed the order after all? And my answers about why Mr. A wouldn’t eat anything (his metabolism was slowly shutting down along with the rest of his body), and why I didn’t think that was a problem (it’s a natural part of the dying process) did not impress her. Didn’t he need his strength, she’d ask? And why was he being allowed to carry on giving himself these enemas—wasn’t there something else I could give him, something else we could do?

Of course, the unspoken questions, the one that made her the most upset, lingered in the air between us like a poison fog. How long did he have left? What would it be like when it finally happened?

And the biggest: How would she go on without him?

Then it happened, the thing I’d once dreaded, and then desperately wanted more than anything else. My period was late. As the time approached when it ought to be coming, I thought I could sense slight changes in my body, slight harbingers of some new person making herself or himself known. Were my breasts slightly less sore than usual, or more sore? Was my mood slightly better than usual? Was I nauseous, just a little bit? Usually, my menstrual cycle was like clockwork. And yet, that month, the day when I was supposed to bleed came and went. No blood. Another day passed. No blood. And another.

I had hope, ecstatic, vigorous hope. Hope, the thread that runs above and through each of Elisabeth’s stages of dying, that never fully recedes, that waxes despite all odds and wanes but never is totally extinguished. I must have gone to bed that night giddy with it, with the sensation that all the long waiting was ending, that the whispered secret I’d been hearing for all those years about my own barrenness, my failure to do what I was put on this earth to do, was wrong. Late, I was late at last. It had finally come. In a day or two I’d pee on a stick to be sure. In a day or two I’d know without a doubt that the bad thing wasn’t real, that I would be who I was meant to be, that all the posturing and dutiful domestic play-acting would not have been in vain.

But then, the next morning, before I went to visit Mr. A, there was blood. I was not pregnant after all.

The distance between my house and Mr. A’s house wasn’t far—fifteen minutes or so, maybe less. I drove south, out of Oyster Bay, toward the center of Long Island and then turned left to go East, toward the Island’s tip, for a few miles. Then I cut north again, up towards the Long Island Sound, into Mr. A’s town.

I didn’t know it then, but in the years to come, I would have many patients in that neighborhood. In the years to come, I would buy a house that was only a few streets over from Mr. and Dana’s. I’d walk or jog past their house almost every day and think about him, about the way he looked when I’d crouch over his hospital bed and check his vital signs, the way he seemed hollow inside, empty, made up of cool breezes and nothing more. The way he looked around me, or through me, as if I was the same.

That was in the future. But on the day when I got my period, just before I left for Mr. A’s, I cried. I drove in silence in the Subaru SUV that my husband and I had specifically purchased in order to have plenty of room for our future children. I visited Mr. A and endured whatever I found there—a half-dead, miserable man, and his sad, lonely, miserable wife, and the emptiness of a house that had never sheltered children, that would never know grandchildren. It was a house that had been built for a different kind of family, one where four bedrooms and three bathrooms and a finished basement and a fenced-in backyard would be barely enough to contain the life within. It was a house like the house my husband and I had bought for ourselves. And when I left it that day, I stood in the driveway and looked back towards it and cried some more. That will be me, I thought. That already is me.

The man inside was dying and the woman inside was heartbroken, but I was blind to them, to their crisis. Dana was right—I was the problem. I could not help him, and therefore I could not help her. She must have complained about me to my boss, or anyway she must have said that I was too new to the job, and asked for Roseanna, the experienced nurse, back. She was right. I wasn’t any good. I was the enema delivery girl, nothing more.

She was making some kind of deal with the universe. She was trying whatever she could. I wasn’t the answer—maybe Roseanna was. If only she could find the right nurse, get him the right kind of help, maybe she could make this go away. It wasn’t a bargain, exactly. It was a kind of Hail Mary. Roseanna was certainly a more competent nurse, but she could not do much more than me, or than anyone. It was magical thinking, this idea that one of us nurses could be the difference between life and death, suffering and not suffering. Between it being okay and it being very, very not okay.

Roseanna took the case again, and Mr. A died shortly after.

When Mr. A’s obituary ran in the paper, my mother called me. “I just saw that one of our my old friends died,” she said. “He lived near you, I think. I worked with his wife Dana many years ago. She was at your baptism, now that I think of it! We used to be very close. I’ll have to go and visit her.”

There it was. Mr. A and Dana had known me all along without knowing me at all. The dead had claimed me, they’d marked me for their own purposes—they’d been present nearly from my birth, at least. Meanwhile, I’d grown up and made my plans ignorant of theirs. I could deny them all I wanted, it would make no difference. They would keep me from my own family, my own children, still unborn, so that I could tend to them while they were alive, while they were undead, and see them through to the other side.

No, I thought. Fuck that, fuck them. I’d go back to the drawing board. I’d find another doctor, someone who would set this right. I’d switch tacks, just like Dana. The memory of my brief, ecstatic hope burned like a tiny pilot light inside my chest. There had to be a way.