Death Fever
Yesterday, I went over to my mom鈥檚 house to fix her bathtub drain. 鈥淚t鈥檚 not working,鈥 she told me. I looked from the toilet plunger in the bathtub to the drain, then I leaned over and pushed the lever down. The water went on its way.
鈥淲ell, it鈥檚 not going very fast,鈥 she said.
鈥淚t鈥檚 going fine, Mom. Why don鈥檛 I look at your bills, since I am here.鈥
Halfway up the stair, she sat down. This is a gesture of the women in my family, confidences in stairwells.
鈥淕ive me your word,鈥 she said. Her voice was tremulous, her breath ragged. She read the question in my face. 鈥淕ive me your word you won鈥檛 lock me up.鈥
鈥淚 won鈥檛, Mom, I won鈥檛. But we have to figure out something else we can do when it gets bad.鈥
鈥淵ou have no idea what they did to me in there.鈥 She is squeezing her own hands and turning them over each other.
鈥淣othing like that is ever going to happen to you again, Mom. You have a family that supports you.鈥
鈥淏ut what will happen? Can we get some pills?鈥
鈥淣o, Mom, you鈥檙e not entitled to the Death With Dignity prescription.鈥
鈥淲hy not? I鈥檝e already received a life sentence.鈥
鈥淏ecause of the way the law is written. It says you have to be six months from the end of your life as determined by a physician and also in your right mind.鈥
鈥淎nd by the time I get that far, I won鈥檛 be in my right mind.鈥
鈥凌颈驳丑迟.鈥
鈥淲ell, that鈥檚 rotten.鈥
鈥淚t is. It makes me angry. The only legal option is Voluntarily Stopping Eating and Drinking.鈥
鈥淗ow long does that take?鈥
鈥淪even to ten days.鈥
鈥淗ow ghastly. I want to go quick.鈥 Then she is crying. 鈥淚 don鈥檛 want to lose who I am.鈥
I realized my mother was changing this winter when the first heavy snow hit, weighing down the lines and taking out the electricity. When I called, I learned that my mother had no lanterns and no snow tires on her car. She also needed new boots. She came out into the snow wearing clogs and managed to navigate her way down the stairs to the parking lot. In the store, while she was trying on boots, she kept changing places, moving from one bench to another while I zigzagged across the floor,聽 collecting our purses and shopping bags.
鈥淚鈥檓 like Mr. Magoo,鈥 she said, when she realized.
鈥淵ou鈥檙e not allowed to move again,鈥 I said, dumping our purses. We laughed.
Does anyone know who Mr. Magoo is anymore? His main problem as a comic-book character was short-sightedness, which he refused to admit he had, even as it got him into one amusing predicament after another. He seemed always to be saved by a stroke of luck, unscathed and oblivious. I wish the same for my mother. But I picture her future brain, the deposits of proteins like the snow weighing down the electric lines, the world preternaturally quiet and stark, the hum of everything in our houses stopped.
My eighty-four-year-old mother is at her best on a trail and keeps a pretty good clip in her hitched gate鈥攖wo hip replacements later. We walk alongside the Nooksack River, around us the thronging green of new spring. At the bank, she remembers her father teaching her to fly fish. From the way she gazes at the glinting water, I wonder if she sees him there. The next day, she thanks me again for taking her. 鈥淟et鈥檚 go back to the desert soon,鈥 she says. The river roils with new run off. I am seeking the headwaters of this story.
As a girl, my mother felt most herself in a horse stable, mucking out a barn. Her father owned a cattle ranch in the Ventura hills, Running Springs Ranch. Pepper trees lined the drive. She took me there when I was a child, before the tract home developers shaved away all recognizable topography. She remembers the name of her first horse: Tickle. She still walks her dog a mile or two every day, even when her vertigo is so bad she thinks she might fall down. We meet to walk to the dog park in Sudden Valley, near the old red barn that is all that remains of the cattle ranch this place once was. The golf course lies in a gentle basin bounded on one side by a nine-mile lake, and on the others by foothills and forests. She鈥檚 slender and walks fast, forward tilted. When she is a certain distance from me, she looks like a girl, and I feel a wistful anguish as though I could see the working ranch of her childhood from here or as though she could have seen this former ranch when she was a girl, this place where she will choose to die.
We鈥檙e at the breakfast table on a Sunday with my brother when my mother says to me, 鈥淚 saw you talking to my doctor.鈥
鈥淢om, I haven鈥檛 even met your doctor. You have an appointment next week.鈥
鈥淣o, I saw you at the cocktail party. You were talking to him.鈥 She sounds none too pleased.
鈥淢om, we鈥檙e in a pandemic. I鈥檝e never been to a cocktail party with your doctor.鈥
鈥淢aybe it was a dream,鈥 my brother suggests.
鈥淢aybe,鈥 she says, not sounding convinced. 鈥淚t felt real.鈥
I don鈥檛 believe my mother has trusted anyone since she met my father.
She was in her third year at Stanford studying art history. He was a Catholic boy on scholarship, son of a widow, studying pre-med. She was an upper-class Protestant, and back then their match was considered a cultural crossing. Though she lives in a small condo now, my mother grew up a debutante in a 1929 brick Georgian house in mid-Wilshire Los Angeles. When I watch the film version of Little Women with my mother, we spot pieces of her furniture: the horse hair chair with the spiral arms, the walnut chest with its sculpted fruit and nut handles, the oil painting of a stately quarter horse. My father鈥檚 beauty as a young man was piercing鈥攖he plush curvature of his mouth鈥攁nd I imagine my mother associated it with sorrow, or maybe shame, something recessed in him she wanted to touch. His mother, Hayd猫e, was a New Orleans creole who found work at the unemployment office because she was fluent in both Spanish and French. Hayd猫e confessed to my mom that for years, instead of going to mass, she dressed up and went to Dunkin Donuts. Even later in life, my father鈥檚 distaste for the church in which he was raised was pronounced, more like revulsion than distaste, more like fury. He once pointed to my son who was six and said, 鈥淚magine being a boy like that, like that, and being threatened with fire and brimstone.鈥
I believe a sin was committed against my father early in life. Perhaps it happened at Loyola Catholic School for Boys or at his local parish. I believe it鈥檚 the reason my grandmother quit going to mass, quit making her boys go. I鈥檒l never be able to verify if he was abused though both my brothers think so, too. My father was covert in his actions. Once he flew up to Seattle from San Jose without telling any of us and dropped in on my brother at the office because he was angry. My father liked stealth.
I have no compass points for the truth from my parents. I do know that when my father left his third wife, she told me he had already rented and furnished an apartment without telling her. Unprocessed trauma plays out as pattern. That鈥檚 why this story loops like a lariat in a rancher鈥檚 hands, a circle in the air first and then a circle in the dust.
My mother cries when she tells me this story: 鈥淎fter I was released from the hospital, I went to the house where you and your father lived, except it was empty. I stood there, looking through the windows. I didn鈥檛 know where he鈥檇 taken you.鈥
鈥淚 don鈥檛 want you there when I speak to the doctor.鈥 My mother鈥檚 tone is arch. 鈥淚 am perfectly capable of handling my affairs myself.鈥
鈥淢om, you have a disability now. Short term memory loss is a disability. You can learn to compensate.鈥
鈥淚 do. I write everything down in my calendar.鈥
She does write everything down in her calendar. And then she gets mixed up and whites it out. Then she says she can鈥檛 use the white out tape. It鈥檚 not made for left-handed people. She gives it to me. I spin the loop back in and take it home. We buy her bottled white out. She says it makes her wheeze. What she needs now is white out tape. Some pages of her calendar are so covered in white out, I can鈥檛 see the date.
鈥淚鈥檓 not going to take over your doctor鈥檚 appointment, Mom. I am just going to be there as your co-pilot, as your auxiliary memory.鈥
鈥淚 don鈥檛 want to be useless.鈥
鈥淵ou鈥檙e not, Mom. We鈥檙e all making adjustments.鈥
She is abruptly tearful. 鈥淚鈥檓 so sorry. I am so sorry for what this is doing to your life.鈥
I almost prefer her fighting with me or blaming her memory loss on the pinched nerve in her neck, prefer it to this torment, this floodplain of grief.
I think about traumatic brain injuries now that my mother is losing memory and cognition. In high school, my mother had a ski accident that concussed her, and she lay in the hospital for weeks while the cortisone dissolved the clots in her brain. This morning, she called to tell me she didn鈥檛 need to see the neurologist.
鈥淚 only lose my memory when you put pressure on me. You鈥檙e so bossy.鈥
鈥淏laming me is not going to help, Mom. This has been going on for a year.鈥
My mother and I have resolved to look through the photo albums this summer, so I can annotate them for my kids. One afternoon, we are leafing through the album from Germany, where my father was transferred by the army to treat soldiers diagnosed with syphilis and deliver the babies of officers鈥 wives. She says quite matter-of-factly, 鈥淭here鈥檚 your father鈥檚 lover.鈥 I peer closer, a dark-haired woman no less vixen than my blonde mother.
My mother was supposed to stay stateside with us鈥 I was six months old and my brother was two鈥 but within weeks, she grew restless and decided to join him. She maintains that my father picked her up at the airport with a woman named Annaliese, his new friend, and that my mother had to sit in back with us. Maybe he borrowed the woman鈥檚 car. Maybe not. According to my father, Annaliese became pregnant after an affair with a senior officer. My father confronted him in order to make the man do the right thing and support the child. According to my mother, my father was having an affair with Annaliese and the baby was his. Either could be true. Dr. Trueblood certainly liked to be the hero for women. He was also very principled and stood his ground. Later in life, when he was chief of staff at El Camino hospital, he publicly posted the C-section rates of all the obstetricians until the numbers fell.
鈥淎fter Dad died, I found handwritten letters from Annaliese,鈥 I say. I don鈥檛 hasten to turn the page. 鈥淎nd pictures of her daughter under his bed. The child certainly didn鈥檛 look like Dad.鈥
My mother shrugs. 鈥淭he art of innuendo,鈥 she says. 鈥淵our brother doesn鈥檛 look like him either.鈥
If there were love messages in those letters, they were couched in 鈥渞emember when鈥檚.鈥澛 Scenes of ice skating and leaves falling. Prosaic. Naturally I was hoping for something definitive. And I only found a handful of letters 鈥hough she wrote to him for nearly twenty years. You decide which version of the story you like best.
I don鈥檛 like either.
We lived in the village and my mother drove a Volkswagen with walnuts in the tire treads for traction on the snow. By accident, she drove through a tank squadron and the ground shook. There鈥檚 a fetching picture of us as a family from that time鈥攎y father and brother in lederhosen wearing felt hats with jaunty feathers, my mother and I in our dirndls. We had friends in a farm house, mulled wine, Krampus at Christmas to chase the children around. He was Santa鈥檚 devilish sidekick. We screamed and ran while he roared. My grandparents hired my mother a housekeeper who waxed the floor with mayonnaise, and we all slipped and fell. To amuse himself, my brother lit toilet paper on fire while sitting on my parent鈥檚 bed. My father came home to a mattress smoking in the snow; my mother had managed to shove it out the window. Towards the end, my mother confronted my father about the alleged affair. It seemed he was always gone, and so stony when he was home. He denied the liaison, saying it was all in her head. 鈥淗e was God, judge, and jury,鈥 as she puts it. When he left that weekend for a hunting trip, she took us to the farmhouse neighbors, then took all her sleeping pills and lay down.
My father arrived home early and saved her. She was medevacked back to the states in a Red Cross helicopter. He would follow later on a military flight that dropped us off in Philadelphia, where my father boarded a train and rode with us to Los Angeles, his two children aged four and six.
Years later, when I told my father that my mother believed he had had an affair in Germany, he said, 鈥淚 can see why she might have believed that, but it鈥檚 not what happened.鈥 I remember exactly where we were when we had this conversation because he did not look at me as he spoke. We were standing at the western edge of the university campus where I teach, eyes traveling from the dark teal blue of the Puget Sound to the glittery peaks of the Coast Mountains in Canada. 鈥淪he was the one who ran off to Vienna to have an affair with a sculptor.鈥
The next time I spoke with my mother, I asked her about it. She said, 鈥淥h, that. That was only after his affair.鈥
Today, she taps her finger on a photo I cherish: the four of us on a blanket at the beach, my mother鈥檚 heavy hair swept up in a French twist, a tender cast to my father鈥檚 face, their babies lolling about in their laps. Evidently, my parents鈥 fights were epic:聽 鈥淚 tried to scare him,鈥 she says now, 鈥渁nd I guess I succeeded.鈥
After the suicide attempt, she wound up in Langley Porter Psychiatric Hospital, and it would take her parents and lawyers to get her back out.
The young neurologist asks my mother if she has ever gotten lost. 鈥淵es, I did once, in the car.鈥
鈥淎nd what did you do?鈥
鈥淚 just drove around until I recognized something.鈥
This is news to me.聽He has her fill out pages of questions. She draws shapes, erases them, redraws them. She looks at me. 鈥淒on鈥檛 ask me to do geometry, Mom.鈥 We laugh. 鈥淚 can鈥檛 help you there.鈥 His walls are hung with enlargements of Mt. Baker and the Twin Sister peaks. For a moment, I feel dug in at the summit, bivouacked where the air is thinnest. After the tests, he tells her he thinks she has a major dementia syndrome developing.鈥
鈥淏ut I feel like myself. Are you sure?鈥 she says.
鈥淭here is no doubt in my mind, from the tests and what you have told me, that there is a major dementia problem going on.鈥
With great kindness, he asks her to stop driving. 鈥淚 wish there was some way for you to maintain your independence.鈥
鈥淚鈥檒l only drive to town and back,鈥 she says.
He鈥檚 ready for this. 鈥淚鈥檇 recommend that you get a behind-the-wheel test at the DOL. They do them for seniors. I have to ask that you not drive until that鈥檚 done, and the office may not be offering the tests yet because of the pandemic.鈥
He mentions blood tests, MRIs, and medications to boost the brain chemicals for improved memory.
She cuts through his medical-ese: 鈥淒oes it just get worse and worse until you鈥檙e no longer a person?鈥
No,鈥 he says, 鈥淵ou鈥檒l always be a person, you will just need more help, eventually a full-time caregiver. But that progression is five to ten years. Once you come to terms with this terrible news, you鈥檒l realize you have lots of quality of life ahead. You don鈥檛 live in pain, and you are capable of joy. We all get a dementia of some kind in the aging process.鈥
My mother squints at him. 鈥淚 fear being controlled.鈥
鈥淭here are entire organizations to support you,鈥 he says, smiling.
While my mother pays the copay, I roll up brochures full of senior care options, and breathe the heated air inside my mask. On the one hand, I am grateful to this doctor for his positive outlook, and on the other, I think, buddy, you鈥檙e ducking it. I鈥檝e read about what end stage Alzheimer鈥檚 looks like: intelligible speech lost, ambulatory ability lost, ability to sit up聽 lost, ability to smile lost, ability to swallow lost鈥
She and I are stunned and silent going down the stairs from the neurologist鈥檚 office鈥攎y mother always takes the stairs. In the car, I propose we get a milkshake, an old family tradition in tough times, except we don鈥檛 know what鈥檚 open in our town anymore. Eventually, I find a smoothie shop. There are instructions on the door for ordering from an app or via the website. I can鈥檛 make the website work, and I don鈥檛 need a free app on my phone to gum it up with advertisements. I can see two young women inside running the juicers. Finally, I just call the shop鈥檚 number and ask if I can order. We wave through the window.
Back in the car with my Mahaolo Mango and her Pina Koolada, we suck in some sweetness. After a few moments, my mother rests the cup in the holder and turns to me. Her blue eyes pool with fear. 鈥淚 won鈥檛 go into one of those places,鈥 she says, her voice running out with her breath. It takes me a moment to realize she isn鈥檛 talking about the smoothie shop. She takes a deep quaking lungful of air. She means assisted living or a nursing home. 鈥淚 don鈥檛 ever want to be locked up. Your father had me committed.鈥
鈥淚 know, Mom, and I know it has made you really afraid,鈥 I say. 鈥淏ut you heard the doctor, we can hire people to help you at home.鈥
鈥淵ou have no idea what they did to me in there. And your father colluded with the doctors not to let me out.鈥
鈥淢om, that鈥檚 not what is happening now. We鈥檙e going to make every decision together.鈥 But she is not hearing me. The sound of pain in her ears must be like the rail squeal of a mile-long freight train. She clutches my hands.
鈥淧romise me,鈥 she begs, 鈥 promise me, you鈥檒l never lock me up.鈥
鈥淢om, I鈥檇 rather die than live in a nursing home. My friend Carolyn lived in one.鈥
鈥淢e, too,鈥 she says. 鈥淚鈥檇 rather die.鈥 She sighs and looks out the window.
鈥淚鈥檝e been afraid tell you that.鈥
鈥淵ou shouldn鈥檛 be. It鈥檚 a relief to hear it said.鈥
鈥淧eople choose to voluntarily stop eating and drinking, Mom, so they can stay at home. It鈥檚 kind of a movement.鈥
鈥淭hat鈥檚 what I want to do then. When it gets bad. I want to stay in my home.鈥
鈥淚 learned about it a few years ago, Mom. My church was sponsoring a workshop, and I went to it.鈥
鈥淲hy would you do a thing like that?鈥
鈥淏ecause I thought this day might come.鈥
鈥淥h sweetheart. You are so courageous.鈥
As a young woman, I tried to understand what had happened to my mother at Langley Porter. At U.C. Berkeley, where I went to college, I read feminist critiques of the male-dominated and male-defined mental health system, and the histories of women who had been institutionalized. In Women and Madness, Phyllis Chesler asserts that 鈥淲omen who reject or are ambivalent about the female role frighten both themselves and society so much that their ostracism and self鈥恉estructiveness probably begin early.鈥 My mother received electro-shock and Thorazine, I know that much. Following her release from Langley Porter, she divorced my father and won custody of us in a courtroom. When I see her walking toward me with her lilting gait and her girlish wave, I think of the courage it took to fight for us, and how exceptionally close it made us鈥 my mother, brother, and me. My husband thinks we are a volatile family emotionally, and it鈥檚 true, we go the mat with each other. We shout a lot but we also show up for each other; we hear each other out. I believe my mother trusts only us in the world. She is like an electrical storm, beautiful and terrifying. There is something so solitary and brave about her. How else could a person make the decision to voluntarily stop eating and drinking?
My mother still likes training dogs on agility courses and in the mornings when we walk, she makes her foxlike Shiba Inu bounce back and forth over a hanging chain or walk along a log. She likes the single-mindedness of animals. After she got custody of us, she moved us in with our grandparents and took to jumping horses and hanging out with journalists who were shooting a documentary about the Ku Klux Klan in the South. She flew off a dressage horse as it went over a jump. As with the ski accident, momentary flight followed by major crash landing seemed to be the theme. She was in Louisiana with a journalist and Nieman Fellow who was in love with her; also his best friend, who was in love with her, and married. The two men had a shouting match over her hospital bed where she lay with a concussion. There was a commercial airline strike at the time, and my grandfather, who was constantly getting her out of scrapes, arranged for a flight out of Louisiana. The seriously boozing journalist secured a private pilot to fly her to Atlanta. My mother swears the pilot鈥檚 name was Monkey Scales and that he could not read the instruments. Every so often they鈥檇 swoop down over the Interstate to read the highway signs. He crash-landed, and it鈥檚 never been ascertained if that was what concussed her again or the riding accident. I remember visiting her in the hospital. She wanted me in bed with her, and she let me have her chocolate pudding. Strands of light came through the slats of the shutters, glistening like fishing line, and I knew even then, if you put my mother to the test, she could pull more than her own weight.
My mother鈥檚 doctor is Polish, somewhere in his mid-sixties, which means he graduated from medical school in Poland in the 1970s, emigrated here, learned English, and completed medical school a second time. Under 鈥減ersonal interests鈥 on his doctor profile page, the first thing he lists is 鈥渇amily.鈥 Also, 鈥渂oating, ham radio and Coast Guard Auxiliary.鈥 He speaks English, Polish, Italian, and German. I followed the advice that Kathleen at Compassion and Choices in Seattle gave me and called the doctor鈥檚 office first to find out if he would be willing to support VSED medically, so we could avoid an uncomfortable exchange and the doctor could prepare鈥 or not. His nurse called back to say we should make an appointment. The doctor would talk to us about Voluntarily Stopping Eating and Drinking.
We wait a long time in the examining room because while he is appreciated for his thoroughness and attentiveness, his patients also know this means he runs chronically late. In the examining room, my mother鈥檚 blood pressure is high. She asks to take her black cloth mask off and is told not to. She turns to me, 鈥淚 feel like I can鈥檛 breathe in this mask. It鈥檚 so thick. I鈥檓 claustrophobic.鈥 I ask the nurse if we can have a paper one.
Dr. Zieli艅ski enters the room in a big way; evidently a big and blustery guy鈥斺淗ello Sara, how are ve doink? You don鈥檛 look like a person who is dyink. You look very nice, as alvays.鈥
鈥淲ell,鈥 I鈥檓 not dying,鈥 my mother says, brightening noticeably, 鈥渂ut I do want to talk about end of life issues.鈥
鈥淚f you vant to talk about end of life issues, you vill have to convince me you are dyink,鈥 he says, gazing at her with a soft smile. I suddenly remember coming across a poem on my mother鈥檚 computer filed 鈥淔or Dr. Zieli艅ski.鈥
鈥淚鈥檝e had this recent diagnosis.鈥 She can鈥檛 seem to summon the word Alzheimer鈥檚. I wonder if she is panicking under the mask. 鈥淎nd I want to know what my choices are鈥 Can I take this mask off?鈥
鈥淐ertainly. Take it off.鈥 He pulls his own mask down beneath his chin and pushes one hip into the counter. He looks like a bald, round-headed baby with a bib under his chin.
鈥淰at your choices are鈥ell, nobody has a right to force feed you. That can be honored. Help me understand vat you are seeking.鈥
鈥淲hen the time comes, I want to choose to die.鈥
My mother is perched on the examining table and the doctor is standing. I am sitting in the corner of the room, literally, and their conversation seems to be taking place over my head. I wait for my mother to say the words she came here to say: Voluntary Stopping Eating and Drinking, or even the abbreviation, VSED.
鈥淚 don鈥檛 do euthanasia, Sara. The drugs that bring about death are controlled substances by the federal government. I don鈥檛 vant to go to prison. I tell my vife, if I am in a really bad shape, take me to the mountains, I vill walk off into the snow. That vill be between me and my maker. In certain religions, you cannot take your life. But every year, so many people drive off the cliff, and these are not recorded as suicide.鈥
鈥淚 don鈥檛 want to commit suicide,鈥 my mother says. She looks at me, quizzically, as if to say, what are we talking about? I am no longer sure either but it is becoming clear to me that he may not support VSED. Is he recommending my mother drive off a cliff?
鈥淟isten,鈥 I say to him, 鈥淢y mother has just been diagnosed with Alzheimer鈥檚 and vascular dementia. She has only this window of time in which to make plans. While she is mentally competent. And she doesn鈥檛 want to spend years in a nursing home.鈥
My mother echoes this, 鈥淣o, I don鈥檛 want to spend years in a nursing home.鈥 She is ready to get back on board.
Dr. Zieli艅ski squints as though he is trying to see us from the other side of the world. 鈥淚 say, if you get to go to nursing home, if you get to. I took care of my mother and it vas very hard time; my grandmother took care of her sister. Nursing home is luxury.鈥
My mother is swinging her legs like a girl and looking down at her knuckles.
I try from another angle, scrambling to get my footing. I thought he was going to help us. 鈥淲hat about the vascular dementia? My mother is at increased risk for stroke.鈥
鈥淚f she has stroke, it鈥檚 simple,鈥 he says. 鈥淪imple.鈥
I feel my cheeks redden. 鈥淢y husband鈥檚 mother was in bed for eight years after a stroke, disabled and locked in. How is that simple?鈥
The grey and grizzled doctor sits on his stool so we can better stare at each other.
鈥淟isten, two hundred years ago, you vent how you vent. Too much morphine suppresses breathing center. We, as physicians, are being put at tremendous risk in this litigious country. Government immediately counts any narcotic I prescribe.鈥
鈥淚 understand, but that鈥檚 not what we鈥檙e asking. There are doctors in Whatcom County who are providing palliative care to patients who choose VSED.鈥
鈥淚 don鈥檛 know about that.鈥 He takes off the square yellow-tinted glasses he wears that make him look like a seventies game show host and scrubs at them with his lab coat. 鈥淚 have malpractice. I let hospice take care.鈥
鈥淗ospice won鈥檛 come in Whatcom County if she chooses to do VSED. That鈥檚 why we need a doctor.鈥
Dr. Zieli艅ski stands and puts his glasses back on. He resumes looking at my mother. 鈥淰e don鈥檛 know how things gonna go. Nobody knows.鈥
鈥淣o, we don鈥檛.鈥 My mother raises one shoulder as she says this, a very feminine gesture I鈥檝e known my whole life.
鈥淵our daughter is legally vell-versed. I am not. People do all kinds of things, that is between them and their God. I am not able to completely satisfy what your daughter vants me to do.鈥
Part of me doesn鈥檛 mind the way he has cut me out in order to return the conversation to a one-on-one between them. This is my mother鈥檚 doctor after all, and I feel a little bit like a child in time-out watching my parents. Yet another part of me feels utterly dismissed, and worse implicated, as a spoiled American daughter who wishes to duck out on pain and responsibility.
Dr. Zieli艅ski tells his nurse, 鈥淰e going to do a new POLST form,鈥 and when she delivers it on a clip board, he gets to work.
鈥淚f you鈥檙e in a bad shape, you鈥檙e not making these decisions. Ve take measures now. You have dementia, so ve going to say nobody search for cancer, okay?
It takes me a few minutes to remember that POLST stands for Physician鈥檚 Orders for Life-Sustaining Treatment; it鈥檚 the form the medics take off the refrigerator if you鈥檙e going on an ambulance ride.
He begins checking off boxes: 鈥淣o to cardiopulmonary resuscitation. No medically assisted nutrition鈥︹
鈥淥h, thank you,鈥 my mother says, 鈥測es.鈥
Don鈥檛 be so grateful, I think, and in the same breath, at least he is getting us part way there.
鈥淪ara,鈥 he says, 鈥淚 have seen bad things. Ven I vas only doctor in my county in Montana, I also act as coroner. This couple, many years disputes between them. The husband, he put couch up against door and rifle under chin, so vife would see him thru front window. Blew his whole head off. I have to see that.鈥
My mother says, 鈥淭hat was an act of rage.鈥
Dr. Zieli艅ski nods. 鈥溾楲ady,鈥 I said to this woman. 鈥溾榊our husband must hate you, really hate you, to do that.鈥欌
鈥淵ou have seen such terrible things,鈥 my mother says. They are gazing at each other. I feel like they have forgotten I am in the room.
鈥淵es, I have seen these terrible things,鈥 he says. In that moment, I see that my mother is someone to whom he has spoken his mind, a person to whom he could speak his mind, these many years. At first, I wonder why he is telling her this story. To let her know he can鈥檛 bear to help anyone end their life? In a moment, I have my answer. In parting, he stands right in front of my mother and looks into her eyes. He knows this is goodbye. He has a big face with a small smile in it, and he keeps his teeth hidden, which adds a kind of sweetness to his countenance. And then they embrace鈥n the middle of a pandemic鈥 the doctor who has a crush on my mother and my mother who has a crush on her doctor. I am embarrassed to be in the room.
In the car, my mom says, 鈥淗e鈥檚 not going to help us, is he?鈥
I am relieved and impressed that she has pulled the essential information from the exchange.
鈥淣o, I think he is Catholic, Mom. That鈥檚 the majority religion in Poland.鈥
鈥淗e was very emotional, all over the map really.鈥
鈥淲hat was that hug all about?鈥
She laughs. 鈥淚 think he has a crush on me.鈥
鈥淎nd you have a crush on him! Sheez, Mom, still working your wiles.鈥
鈥淚 felt bad for him. He couldn鈥檛 stand the idea of helping me die.鈥
鈥淗e has a good heart, but yeah, he鈥檚 not going to help us VSED.鈥
鈥淲hen did we become 鈥渨e鈥?鈥 she asks.
鈥淢om, I can鈥檛 ever be the one to bring up VSED to a doctor again. That can鈥檛 come from me or other people will think I am coercing you. Dr. Zieli艅ski thinks I don鈥檛 want the bother of caring for you.鈥
鈥淭hat鈥檚 so not true. You鈥檙e caring for me right now.鈥
鈥淚 know, but you heard what he said about nursing homes.鈥
“He鈥檚 just very conservative, paternalistic. I thought he might be. What next?”
鈥淲e need to find you a new doctor.鈥
That night at home, I ask my husband, the child of Latvian refugees, how the doctor could view walking off into the snow as natural but not voluntarily stopping eating and drinking. 鈥淗e鈥檚 old world,鈥 my husband says. 鈥淪tarvation is something other people do to you, it鈥檚 not something you do to yourself.鈥
At night, I research, and I talk to my brother. VSED sounds like it can go one of two ways鈥攎y mother could lapse into a coma in three days and be gone in six, or it could be a long haul, nine or ten days of shriveling and thirsting while her hands and feet turn blue. For several weeks, I鈥榤 frantic on the internet, fueled by a rash grief: I reach out to Compassion and Choices (formerly the Hemlock Society), and the Final Exit Network, another volunteer organization dedicated to 鈥渟elf-deliverance and assisted dying for the terminally and hopelessly ill.鈥 I learn that the helium hood method is the most popular, and that it is not painful to breathe the inert gas. But there are聽 other problems: my mother would have to do it entirely herself (none of our fingerprints on the hood), although we could be there with her. (It is not technically illegal to watch a person commit suicide.) I also learn that party stores no longer sell pure helium; it鈥檚 now 20% air and won鈥檛 work for the purposes of departure. One morning, I make an urgent call to my brother: 鈥淐an you get pure helium?鈥
鈥淵es,鈥 he says, 鈥渇rom welding supply.鈥
鈥淛ust call me Katy Kevorkian,鈥 I say.
I visualize everything, my mother鈥檚 brass bed, her terra cotta red chair, the books at her bedside, the brass clock with the black roman numerals. I can鈥檛 decide if my brother and I should throw away all evidence of the helium tanks and equipment afterwards (so she won鈥檛 be found with a turkey baster bag over her head) and do as Derek Humphrey advises in his book: leave her house and buy something so that there will be a receipt with a time stamp. Then, on the morning of the next day, call the doctor. Humphrey advises against calling an ambulance, which would bring the police. With luck, the doctor and the coroner will deem the cause of death as old age. No autopsy, no investigation. I find no records of assisted suicide being prosecuted, and ours is a right-to-die state. Still, there is a risk here. My mother is adamant we not take any risk. 鈥淚鈥檓 not going to ruin your lives.鈥 So, I picture leaving her in her bed, beneath the lemony satin quilt, hood on, plastic sucked to her face. That way, it will be clear she did it to herself. The roman numerals on the clock in her bedroom seem to keep time to a different era, a different universe.
鈥淵es,鈥 my mother says, 鈥渂ut if Andrew is going to buy the helium and bring it here, that鈥檚 a problem.鈥 She lets out a huge sigh. 鈥淲hy can鈥檛 I just have pills?鈥
This I have explained to my mother repeatedly. Physician-assisted suicide is legal in Washington but excludes dementia patients.
鈥淪o, I鈥檓 screwed,鈥 she says.
鈥淏asically,鈥 I answer.
Next week, we will have this conversation again. I wonder about the role of credulity in her memory. After all, she was hanging out with movie crews during the barbiturate-plenty seventies. She can鈥檛 believe phenobarbital and Seconal are that hard to get. She also can鈥檛 believe Alzheimer鈥檚 is excluded from the right-to-die law when in her view it is a terminal disease. 鈥淚t just takes forever,鈥 she says to me ruefully. When she forgets why she can鈥檛 have the pills again, I will remember that she took sleeping pills once, a long time ago in a far, far away land, at least that is how my child mind framed it, my mother the queen locked in the tower by her husband.
She calls me at 8:30 one morning. Her voice is hoarse and she is gulping air. 鈥淚鈥檝e started,鈥 she whispers.
鈥淪tarted what?鈥 I ask.
鈥淰SED. I鈥檓 not going to eat anymore.鈥
鈥淢om,鈥 I say, 鈥淚t鈥檚 not something you just do. We鈥檝e got to have a doctor on board in case you need pain medication. We鈥檝e got to get the lawyer to rewrite your healthcare directive.鈥
鈥淥h,鈥 she says. She sounds tearful. 鈥淲ell, I want it to be soon. I look at you kids and at Connor and Eva and my funny little dog. I go walking, and I am so in love with life, this is how I want to leave it.鈥
鈥淢om, I鈥檓 going to respect whatever decision you make, but let鈥檚 get into Dr. Henares first and make sure we have the medical support you need.鈥
When I hang up, I get a cup of coffee and call a close friend. Her husband is undergoing treatment for Stage IV cancer. I know that recently he has switched from oxycodone to morphine for pain management. In my state of mind, asking for his drug surplus seems only a little bold. I鈥檝e known Lucy since 8th grade鈥擨 once went on a road trip with her up California鈥檚 Pacific Coast Highway and got so high on hash oil I fell out of her car. After years of underage drinking and our generally reprobate behavior as two jailbait girls hanging out with Viet Nam vets, this doesn鈥檛 seem out of bounds.聽 In retrospect, I think I was suffering from death fever, the condition that arises when you鈥檝e never thought much about death before and now you think about it all the time. Lucy was very loving. She said, 鈥淯m, sometimes he still needs the oxy for breakthrough pain, but I鈥檒l talk to the palliative care social worker and see if we can get more.鈥 Her tone was squeaky with discomfort, yet also honeyed with concern. 鈥淚 mean, we want to help your mom out.鈥 I thought about the liability and guilt they would feel鈥攈is pills inside my mother鈥檚 body, stopping her ticker. I never ask Lucy again, and my having done so does not disrupt our friendship. If anyone could understand and forgive my temporary insanity, it is Lucy.
We have to wait a month to get the results of the MRI back from the neurologist. Unlike us, my mother is able to forget that she may have Alzheimer鈥檚 or vascular dementia. Sometimes, she is light-hearted. She calls from the front hall when she comes to dinner, 鈥淭he ninny is here.鈥 She has forgotten her hearing aids and the pie back at her house. 鈥淏earer of little brain!鈥 Other times she tells me, almost as a warning, 鈥淚鈥檓 going to live a long time like my mother.鈥 Yes, I think, your body will live a long time, but you brain is dying. Often, she completely forgets the visit to the neurologist and his conviction that she has a major dementia disorder. I have to remind her.
鈥淗ow do you know?鈥 she says.
鈥淚 was there with you, Mom.鈥
鈥淲as I there?鈥
鈥渊别蝉.鈥
鈥淏ut how can you be sure it鈥檚 Alzheimer鈥檚?鈥
鈥淚t鈥檚 in the chart notes he gave us. You put them in a file upstairs.鈥
鈥淵ou gave me the chart notes?鈥
鈥淵es, I did. Let鈥檚 go upstairs and read them.鈥
When we鈥檙e done reading them, she leans back in her chair with the fingers of both hands covering her mouth. Then she drops her hands to her lap, suddenly gasping. 鈥淧lease don鈥檛 lock me up. Please. You have no idea what they did to me in there.鈥
I take her hands. 鈥淢om,鈥 I say again, 鈥淚 know what happened to you, but that is not what鈥檚 happening now.鈥
In the days and weeks that follow, I swear she can feel that I am withholding something from her, she can feel all that agitated research I am not sharing. Instead I talk to my therapist about the pros and cons of helium hoods versus VSED. I consider aloud where I can get pills. My therapist and I are on ZOOM and we often bend our heads towards the screen so that I have the feeling we really are putting our heads together. His eyes get fishbowl large. I expect him to favor the legal options, but he says something that squeezes the blood out of my heart. 鈥淎 body may be barely occupied and still fight for life. It can get very unclear. The memory of it could stay with you for years.鈥 There is no way I want to wonder if I killed my mother.
Kathryn Trueblood鈥檚 newest novel, Take Daily As Needed, presents the challenges of parenting while ill with the desperado humor the subject deserves (University of New Mexico Press, 2019). She has been awarded the Goldenberg Prize for Fiction and the Red Hen Press Short Story Award. Her work is situated firmly in the medical humanities. Her previous novel, The Baby Lottery, dealt with the repercussions of infertility in a female friend group (a Book Sense Pick in 2007). Her story collection, The Sperm Donor鈥檚 Daughter, takes a look at assisted reproduction. Trueblood has offered workshops in therapeutic writing at The Examined Life Conference at the University of Iowa, the Hugo House in Seattle, and the Lighthouse Writers Conference in Denver. Her essay, 鈥,鈥 was published by Literary Mama, and you can find her interviews at , , and . She is a professor of English at Western Washington University and a faculty member of , a non-profit organization serving veterans in Washington through the use of storytelling techniques.