Twenty-one years ago my mother stopped her dialysis treatments before they’d barely begun, a decision that prematurely ended her life.
It was her right, if one that patients rarely assert, and therefore morally, medically, and existentially unique. With physician-assisted suicide, a doctor supplies knowledge about how to die, or the means to do so, or both. In cases where a loved one has fallen into a persistent vegetative state, family members must choose whether to discontinue life support. But voluntary death by kidney failure, especially in the absence of other, imminently fatal illnesses, requires only an individual’s will.
When my mother told me she wanted out, I found that I wished it were otherwise.
By that time, she’d already undergone several procedures to address her peripheral vascular disease, angioplasties on her legs—slices from ankle to groin and the veins stripped away—followed by what she called a “Roto-Rooter job,” an operation to clear the plaque that blocked 90 percent of her carotid arteries. This blockage was discovered by way of a nightmare.
She awakened one night from the malevolent company of whispering birds to discover herself in the middle of an earthquake. Like any sensible Californian, she got up at once and moved into a doorway to wait it out. The walls flexed around her; the floor rolled unnervingly. When it was over, she put on a bathrobe and went out into the street. She expected to see her neighbors coming out of their homes as well, everyone gathered on the sidewalk to compare notes. Instead, she was met by silence. Up and down the block all lights were out. She strolled for a while but no one emerged. She couldn’t understand it. What had happened here? Finally, shaking her head, she went back inside and got into bed, and she dropped off at once, sleeping, she told me, the sleep of the dead. In the morning she consulted first the newspaper, then her next-door neighbor. And she was forced to conclude that there had been no earthquake, that the disturbance was internal. Perhaps, she thought, the shaking had been part of her dream. But she didn’t really believe that. A trip to the doctor revealed that she had most likely experienced a transient ischemic attack, her brain, deprived of oxygen, tricking itself.
While a nurse changed the bandages on her neck, I inspected the jagged scars. “All you need, Mom,” I said, “are bolts.” This was a Frankenstein reference and made her smile, something I hadn’t seen in some time. The 1931 black-and-white horror classic directed by James Whale was the first movie my mother ever saw, along with her older brother, Vincent. That moment when the monster throws the little girl into the lake had scared the bejesus out of her, the six-year-old in the audience identifying all too easily with the child up on the screen, imagining the terror of sinking underwater and fighting for air. In the hospital bed, she barked out a laugh. She was certain that she was home free.
Within a few weeks, however, her renal veins had collapsed. Her kidneys, it seemed, were shot. “I knew something was rotten in Denmark,” she said. The doctors operated again, putting in stents that immediately failed. And just like that, she entered end-stage kidney disease. Due to a fifty-year, two-pack-a-day smoking habit, she was not a candidate for transplant.
At her first postoperative appointment, the doctor said that her blood pressure was high. Was she easily winded? he asked. Had she experienced decreased appetite or weight loss? He noted her swollen feet, and her cough. Any trouble breathing? Not particularly, Mom said. He put a stethoscope to her back and her chest and listened carefully. Any tightness or pain? Yes? No? Yes? Well, the doctor said, it was possible she had the beginnings of emphysema. But only the beginnings—no need to worry about it for now. Mom nodded agreeably, though her lips thinned. For now, the doctor said, all she needed to know was that she’d be on dialysis for the rest of her life.
I’d traveled to California from Colorado to see her through that last operation, and over the next month I drove her to a dialysis center for thrice-weekly treatments. In between we did what we usually did in each other’s company: walked on the beach; went out to lunch; played Scrabble or watched old movies or read. My mother was a widow, and I her only child. We hadn’t always gotten along, but over the last few years a small truce had, without acknowledgement from either of us, grown into something more durable. The dialysis treatments tired Mom, sometimes dramatically, but I was proud at how she took them in stride. She was tough, a survivor; she always had been. I hadn’t always appreciated that.
Then one day, on the drive home from the dialysis center, she announced that she was “done.” At the age of sixty-nine, she was, she said, “pulling the plug.”
This so astonished me, I steered to the side of the road. I turned to face her. “You can’t do that,” I said. To which she replied, “I most certainly can.”
I demanded reasons.
“I don’t have to give you reasons.”
Traffic streamed past. For a half-second, I thought I hadn’t heard her right. But of course I had. “Oh, yes,” I said. “You do.”
“It’s unnatural,” she said. “The dialysis. I feel like I’m being embalmed.”
“But that’s crazy. They’re just cleaning your blood. They’re not putting anything inside you that isn’t yours.”
“I know that,” she said sharply. “I’m not an idiot. I’m telling you how I feel.”
I begged her then to come live with us in Colorado, told her I’d help any way that I could. She pooh-poohed the idea. She didn’t even have to think about it. It stung. I thought of all the ways in which I’d disappointed her, things I’d done, choices I’d made; how we’d talked around and past each other for years.
“Why not?” I asked.
“If you must know,” she said, “the dialysis makes me feel like I’m already dead.” She hesitated. “But then, I’ve been dead for a long time.”
“Oh my God, that’s awful. Why would you say that? What do you mean?”
“I want out, honey,” she said.
I panicked then. And I’m ashamed to admit it, but my thoughts were still all for myself. It wasn’t the sort of selfishness you might expect, not anticipation of the pain of losing her but a guilty, demoralizing fright: If she died, it would be my fault. Clearly, I’d never loved her enough. If I had, she’d want to stay.
Mom sighed. As if reading my mind, she said, “It’s got nothing to do with you. I’m tired, that’s all. I’m tired and I’ve had enough.”
Enough what? Dialysis? A month hardly qualified. But what she meant was that she’d had enough of life.
“It’s not a bad way to go,” she said.
This was true. Dying from kidney failure is considered a good death: pain-free, peaceful, and brief.
But I didn’t care about that. Shaken, I appealed to her doctor, convinced him to make an emergency house call. The three of us sat in the living room, Mom and I on the sofa, the doctor in Mom’s blue velvet easy chair. He questioned her for a while. “We can get you a home unit,” he said. “You won’t have to go to the center, if that’s the problem.” Mom said, “But it won’t change anything. This is not what I want.” The doctor frowned at an ashtray on the coffee table, crammed with cigarette butts. He explained what would happen to her.
“The toxins will build up in your blood,” he said. “You understand?”
“You’ll notice a profound loss of energy, a deep fatigue. You may have confusion, or anxiety. You may hallucinate. The buildup of minerals will cause muscle spasms. Seizures are possible. Your body, retaining fluid, will bloat, and the fluid buildup will compromise your lungs and make breathing more difficult. Under increasing stress, your organs will begin to shut down.
“In short,” he said, “you’re going to die. It might take a week; it might take two. At your stage of kidney failure, people don’t get more than that. Do you understand?”
Again my mother nodded.
“You know what I see?” the doctor asked, oh so delicately. “A woman who is depressed.”
She fixed him with her clear blue eyes. “Of course I’m depressed. Who wouldn’t be?”
“Ah, well, then.” The doctor sat back in the chair, looking relieved. “I can prescribe an anti-depressant. You’ll have to wait for it to kick in, but I promise you’ll feel better soon.”
At which point my mother laughed.
A social worker had no better luck. Nor did her friends. She refused to see them, had me turn neighbors away at the door. She wouldn’t speak to her brother or her sister on the phone. Nor was her parish priest able to dissuade her, not that he tried all that hard. He sat in the living room, in the blue velvet chair, eating cookies and talking about the church’s summer bazaar. Brushing crumbs from his chest, he asked if Mom wanted to make a confession. When she said no, he nodded. He led her in a recital of her baptismal promises. He anointed her with holy oil and gave her communion. After a blessing, he left. If Mom’s siblings had expected the church to dangle the threat of eternal damnation, they were in for disappointment. Suicide might be a mortal sin, but the refusal of extraordinary measures—and dialysis counts as such—was acceptable.
To everyone who knew her, my mother’s decision seemed out of character, especially for a woman with strong religious beliefs. But maybe it wasn’t. She’d long kept a typewritten list of the dead. At the top of the page she’d written: “These are people whom I have known throughout my lifetime, and [who] have passed my way on their journey to the everlasting kingdom. May God, in his immeasurable mercy, receive them with His Love and Peace.”
There are 224 names on that list. It’s such a strange document, poignant, creepy, mysterious. The later additions are in Mom’s handwriting, the final entry dated May, 1994. By August, she herself was gone.
Moments from those last days are burned into my memory. Helping Mom bathe in her awkward Roman-style tub, climbing in and out to shampoo her hair, instructing her to hold a washcloth over her eyes while I rinsed, as if she were my very own child. I cooked her a fried egg in a big pat of butter and when she took a bite her eyelids fluttered. “This is the most delicious thing I’ve ever tasted,” she said. How, I wondered, could someone who felt that way want to die? But when I tried to press her, she cut me off. The next day I served a visiting hospice worker tea, setting a dessert plate under the cup rather than a proper saucer, and Mom exploded. “What’s the matter with you?” Her fear, displaced, seemed so plain. But it’s also true that she cared about such niceties, enormously.
Each night I sat in a chair in her bedroom while she tried to sleep, sleep being for the most part an impossibility. “What are you thinking?” I asked. A terrible question, but I suppose I was hoping that in the dark she’d admit to some doubt, maybe even back away from her decision to go. All she had to do was say the word and I’d bundle her up in the car and drive her over to the dialysis center and get her blood cleaned. And then, once the poison was cleared, she’d be right back where she started.
“I’m thinking about the universe,” she said. “How big it is. How big God is. All those stars.”
Where did she believe she was going? What did she think she would see? What questions did she imagine would be answered at last? I owed my mother everything, but I am not a person of faith, and as a nonbeliever, how could I ever reconcile my sense that this one life is all we have with her certainty that death would admit her to Paradise?
Two days before she died, her brother called from New Jersey. He demanded to speak to her, but though she was sitting beside me, she refused to take the phone. “Why does she have to be so goddamned stubborn?” he said. He told me he’d booked a flight to California.
Mom, hearing this, stuck out a hand. I passed her the receiver. “Vincent, don’t,” she said. “I don’t want you here. Better to say good-bye now.”
But he’d already purchased a ticket. Moreover, their sister, who lived in Florida, was also coming. Together they meant to convince Mom, to force her, if necessary, to change her mind.
Mom said, “You’re wasting your time.”
“God damn it, Dorothy!” Undone by the anguish in my uncle’s voice, I groaned. Mom scowled at me and shook her head.
After she hung up, she took my hands and gripped them firmly, and said firmly, “You are my girl forever. You know that, don’t you? You’re the only one who understands.” She placed one palm to her cheek, the other to mine.
Twenty-one years later, maybe I do.
My iron-willed mother was afraid. She’d been told she had the beginnings of emphysema, and she knew that the end stages of that disease were monstrous. The never-ending struggle to breathe, the sensation of drowning: she emphatically did not want to drown. Neither did she want a life sustained by a machine. That, to her, also felt monstrous. And difficult as it was to accept, mentally and emotionally she’d had enough of this life.
She wanted a good death, defined in her own way. It was her right.
In the end, she died while my aunt and uncle were en route from the East Coast, six miles up in the air. I was on the phone with yet another relative, sweating and swearing because the delivery of a hospital bed had been delayed. A wild bellow came from Mom’s bedroom, a sound like a wounded elephant in the bush. I threw the phone down and ran in to her. I found her on her back, gasping and rattling. Her eyes were unfocused; I knew she couldn’t see me. I grabbed her shoulders and cried into her face, “Take a breath, Mom! Please, please. Take a breath!”
Later, the hospice nurse told me she’d suffered a heart attack. The bellow was involuntary, a reaction to the pain. “There wasn’t supposed to be any pain.” I said. Then I said, “You told me she had more time.” The hospice nurse placed a sympathetic hand on my arm. “I thought she did. But sometimes, you know, they’re in a hurry.
At the funeral home where we held the wake, I stood watch beside the casket as people paid their respects. Some cried, and this moved me, but I did not cry myself, although later at the service, when I gave the eulogy, I wept so hard that no one understood what I said.
Toward the end of the viewing, my uncle, who’d been sitting quietly at the back of the room, approached. He positioned himself beside me, closed his eyes, and bowed his head. When he’d finished his prayer he made the sign of the cross. Then he glared down at Mom. She didn’t look like herself. Her hairstyle was all wrong and her neck bulged distressingly, though the scars from the Roto-Rooter job were well disguised. The dress I’d picked for her to be buried in was crinkly blue cotton, bits of shiny metal embedded in embroidery. The square neckline showed off her handsome collarbones.
Confrontationally, as if she might sit up and argue, my uncle said, “You did the wrong thing, Dorothy. You really did.” He reached for my hand and squeezed it—I’ve always been grateful for that. He said to his little sister, “I wish you’d waited, kid.”
Rumpus original art by Estevan Guzman.