First Person: On Mother's Day, My Mom Asked Me To Help End Her Life
Alex Schlempp recounts the journey he took to give his mother the gift of death.
BY ALEX SCHLEMPP WITH PATRICK PACHECO | May 6, 2016 | Culture
Mother's Day, 2015. Giuliana, my mother, at 75 years old still spirited and stunning, says, "Alex, you have to make this happen."
By "this," she means to arrange for her to die.
We are sitting in the living room of her Miami Beach condo: marble floors, bone-white couch and curtains, vibrant wall art, mementos of her bicontinental life on every surface. Vials of sand line the shelves, each one from a different Mediterranean beach—Ostia, Circeo, Capri—souvenirs of her radiant Italian youth. Junior, her beloved Maltese, rests on her lap.
All it takes to put someone to death is a lethal dose. But what level of misery suffered by a loved one makes support for such a decision not an act of negligence but one of mercy? As always, Giuliana knows what I am thinking and doesn't need to articulate the pleading in her eyes: Do this while I am still lucid, while I still have the courage and strength to get on that plane.
The previous August, my mother had begun complaining of pain in her lower back. Shortly after, she, my older sister, Christina, and I received the bad news in a too-bright oncologist's office: an advanced and aggressive case of pancreatic cancer had taken hold. The doctor predicted that she had four to six months to live.
Giuliana absorbed the diagnosis without histrionics—unusual for her. She'd always been mercurial, unpredictable, emotional. Then again, she'd become desensitised to illness, having seen her twin sister, younger brother, and mother all die of cancer.
She remained calm as the doctor enumerated our options: invasive surgery, radiation, chemotherapy. She interrupted him: "If I were your mother, would you advise me to do these things?" After a long pause, he replied, "No."
"Then I won't," she said resolutely.
Within weeks, Giuliana began concocting a plan. Terrified of dying alone—the most pitiful death she could imagine—my mother would die on her terms: peacefully, in her sleep, surrounded by loved ones. And she wanted me, her only son, to stage-manage the final production.
She was counting on the dispassionate efficiency I inherited from my late German father. Giuliana's and my relationship, in contrast, was warm, emotive, Italian, the language in which we spoke to each other. For the last two decades of my 48 years, our days began and ended with phone calls recapping each of life's details, no matter how quotidian. For her, it was as a widow teaching Italian and occasionally organising tours to Italy; for me, it was at first life as a ballet dancer and then as a theatre executive.
She could be very stubborn and irrational; I often had to argue her out of bad decisions. But I didn't know whether or not this was one. I needed to be sure beyond the remotest possibility of doubt that this was something she wanted to do and not just an impulsive response. So as I began charting this strange new terrain, two thoughts gave me comfort: Everything will be fine and, in my darker moments, Perhaps a bus will hit her and we will all be spared.
Oregon was the first state to legalise physician-assisted suicide when, in 1997, the Death with Dignity Act was enacted. In 2016, California was the latest state added to a list that includes Montana, Washington, and Vermont, each with varying criteria and restrictions. Elsewhere in the country, progress toward passage has been slow or nonexistent.
Many dissenters' positions are rooted in religion. But within the medical field, much of the opposition comes from those who firmly believe the Hippocratic Oath, which each doctor takes, forbids it: "I will give no deadly medicine to anyone if asked, nor suggest such counsel." The arguments extend through questions of mental competency, the ethical devaluation of life, and hope, no matter how elusive.
Giuliana's mental competency is never in question, and she is too practical to think that a miracle drug will save her. But she has concerns: that she will botch it if she tries herself; and that, even though she ceased going to church in her last years, taking her own life is a sin—the Vatican, after all, fiercely opposes it. But a doctor-sanctioned death, she believes, will be okay with God.
The logistical arrangements would be far easier if Giuliana chose to die in the United States, but she is determined to return to Europe, both because she was born there and because she believes the process will be more efficient. But where? The Netherlands has the most liberal requirements—depression alone is considered a sufficient justification—but it is open to its citizens only. Ditto Belgium. Switzerland, where it has been legal since 1940, is the only country that offers the procedure to foreigners.
Dignitas in Zurich is the country's best-known organisation. We download their brochure, thirty-five pages long, most of them dedicated to discouraging the reader from going further. A statistic catches our eye: Only 13 percent of those who begin the exploratory process actually see it through to the end. Knowing how capricious our mother can be, Christina and I worry that Giuliana will repeatedly change her mind, giving us emotional whiplash in the process.
Giuliana is disgusted by one description that says something like, This is the cup from which you have to drink the pentobarbital. Since it is extremely bitter, you will have the choice of chocolates right after. "What is this 'chocolate' idiocy?" she says, her hazel eyes widening. "A bitter medicine will be the last taste in my mouth? Never!"
"You're dying, so what does it matter?" I respond, shocked that she is focused on so seemingly small a detail. What I don't realise then is that her reaction is far from petty. Over the course of her lifetime, my mother, never wealthy, created her own brand of glamour through meticulous attention to detail—and this was perhaps her final one.
We ultimately dismiss Dignitas. The only option for administration is oral; she has trouble keeping food or liquids down and is set on receiving it intravenously to minimise risk. More importantly, the vetting process takes up to four months. Giuliana is irate. "Why are these Swiss so stur!" she says. German for "inflexible."
I counter that they are right to be thorough. "What if you weren't ill and I just wanted to get your inheritance?" I argue. "The person who wants to be put to death needs to be fully cognisant."
"I don't have three or four months!" she wails.
"If this is so important to you, why don't we just do it here and be done with it?" I ask, exasperated. "You have enough medicine to kill off your whole building."
"I don't have the courage," she answers.
Giuliana believes she'll be dead by the holidays. That she survives five months beyond that is in large part due to Junior. My mother has never liked dogs, but months before she became ill, her neighbour's Maltese had a litter and she agreed to take the runt. The dog has become a lifeline: Walking and endlessly grooming him fills her days, and he returns the favour with slavish affection.
He becomes an increasing source of comfort when, in March, the disease begins to more brutally manifest itself. Up to this point she has managed to put up a brave front, going about her routine—teaching Italian, making her weekly lasagna, lunching with friends—interspersed with weekly visits to the doctor. The very notion of ending her life prematurely seemed abstract, absurd.
But her pain grows. She is now on a heavy dose of opiates. I'm in Hong Kong on business when Christina, who has come from Germany to care for her, calls me. The situation has worsened, Giuliana needs constant assistance, and my sister has to return to her own family. I have no choice but to come back.
From then on my New York life is in abeyance while I stay in Miami. To keep Giuliana's mind off of the illness, we watch films late into the night. Turner Classic Movies is a daily ritual; she has a crush on Robert Osborne. Sophia Loren, Rita Hayworth, and Elizabeth Taylor she considers friends. It is a reversion to a childhood passion sparked by a great-uncle who made spaghetti westerns in Italy. But it grew because of the escape cinema provided from her claustrophobic upbringing. Giuliana especially liked American films featuring liberated heroines. Now she finds comfort in their return.
In an attempt to increase her appetite, I ask friends to procure pot cookies. At first she resists—she's never gotten stoned in her life and doesn't smoke or drink with the exception of an occasional glass of prosecco. But the chance to alleviate pain trumps her doubts.
Over the course of her lifetime, my mother, never wealthy, created her own brand of glamour through meticulous attention to detail—and this was perhaps her final one.
The cookies work their magic, but they are a mistake; she gets the munchies, devours everything in the refrigerator, and pays for it dearly later that night. The vomiting has accelerated as the disease progresses, and the extra food makes it much worse. While she is in the bathroom disgorging, Junior is in the corner, vomiting along with her in solidarity.
Watching her suffer, now all too visible, crystallises our decision. Her self-inflicted end will not be a mistake; it will be a mercy.
She becomes fixated on dying on her birthday, April 22, less than six weeks away. She finds the notion poetic. Determined as ever, she contacts Exit Italia, an organisation that helps Italian citizens locate end-of-life clinics in nearby countries. For us, they recommend Liberty Life in Lugano, in the southern part of Switzerland. Unlike Dignitas, Liberty does not have a waiting period. Beyond the cursory paperwork, all that's required is a membership fee of 50 euros and another 13,000 euros for the procedure. We make an appointment for the 22nd and book our flights.
On Easter, two weeks prior to the date of our arrival, Christina drives the four hours from her home in Baden-Baden to check out the facility. It is a disaster. The clinic is located in an ugly industrial part of the city devoid of any civic touch. She phones us immediately. "It's horrible," she says. "The owner has been indicted for fraud in Italy. Cancel everything."
Giuliana is devastated—"I guess I'll just have to die like everybody else" is all she can say. Christina and I also meet the news with resignation, but also relief. Through these emotionally trying months, we've fought the nagging thought that children should not put their parent to death. As strongly as we know it is the right thing to do, this new development exonerates us, if only for a bit.
Then, unexpectedly, a new medication regimen offers salvation: She feels better, exponentially so, even close to her old self. It is Mother's Day and we celebrate her return with elation. For a brief moment, a false hope floats up: Maybe she'll heal. But that is quickly followed by the realisation that even if her life is extended, it will inevitably lead to protracted, extreme suffering—the cancer isn't going anywhere. Giuliana pleads: "Alex you have to make this happen."
Shepherding Giuliana to her death has gone from being a burden to being the last, best gift we can offer. But insurmountable walls pop up in every direction we look. How are we—how am I—going to see this through?
In her lower moments, my mother has taken to doubting herself. "I'm not a fighter" becomes a mantra. Few who know her would agree. Just ask the fellow board members of her Miami Beach condo whom she led in the fight against a corrupt president. Or the German monks on whom she unleashed her fury when they refused to bury my father on the grounds of a ninth-century abbey. After threatening to use her Vatican connections, she got her way.
The best example of what family and friends called "Giuliana Drama"—the one seared deepest in my mind—is when my father, Michael Schlempp, a doctor, had an affair with his medical assistant in the provincial Bavarian town in which we were then living. When she discovered the betrayal, Giuliana dragged the offending mattress down two flights of stairs, doused it with petrol, and set it afire in our garden.
We'd always ascribed such intensity to her Italian roots. My earliest memories are centred around the dinner table with our extended family, at the apartment in Rome, the beach house in Circeo, the villa in Capri. Conversation revolved around food: how gorgeous the red tomatoes ripening under the sun in my grandmother's garden were, whether the garlic sizzling in the saucepan was ready for the fresh basil, where to buy the creamiest mozzarella.
Her marriage to my father—from another country, as tempered as her relatives were clamorous—was a way of loosening the bonds of her strict Italian family. The move backfired when, instead of the cosmopolitan life she'd imagined, she found herself an Ausländer (outsider) in a small town with two small children—Christina was born in 1965 and I came sixteen months later—and the subject of intense gossip as the wife of a philandering doctor.
When my father, with whom I'd always had a close relationship, died suddenly of heart failure in 1980, Giuliana didn't look back: For the first time in her life she had the freedom and financial wherewithal to follow her own pursuits. She bought property in Rome and Munich and took us on vacations to New York and Jamaica.
She latched on to me as her caretaker and surrogate partner. At 13, even as I was pursuing my studies and taking piano and dance lessons, I began handling all of the family's business affairs. Our relationship became defined by her annexation of my emotions and my occasional, futile efforts to stop it. Only when, at 19, I was accepted into the dance program at Juilliard and moved to New York was I able to extricate myself. She supported the move even if that meant, for her, a painful separation.
She visited often and fell in love with the city. It didn't take her long to notice my interest in men.
Giuliana's feelings toward my sexuality changed often and without notice. At first, she feared that her family would consider it yet another one of her failures. Her mother already blamed her for my father's affair, and another indictment would be unbearable. But she came to tolerate and then accept it, basking in the glamour that the city's gay performing-arts scene afforded her each time she came to town.
Then I met Robert. It was 1998, and Giuliana had just won the green-card lottery and moved to New York. She was around me more than ever and witnessed firsthand what was my most tumultuous relationship. Despite glaring issues, Robert (not his real name) and I loved each other and held a commitment ceremony on Fire Island to prove so. Giuliana attended with an equal measure of curiosity and maternal loyalty, but she cried copiously—and not out of joy. The event was far from what she'd envisioned before she knew I was gay—a prestigious wedding to a beautiful woman from a well-positioned family.
But she also sensed something off with Robert, and she was right. More than anything, this commitment was my lifeline to him, then in the throes of a serious drug addiction and severe depression, two suicide attempts included. She invited me to lunch one day and pressed her case. "I am worried. Are you okay?" she asked. "You hear so much these days about drugs and AIDS."
On edge, I looked squarely at her and said, "You aren't equipped for this conversation. Drop it!"
I expected an eruptive reaction—Giuliana always had a response simmering. But she remained quiet. Her expression changed from combative to teary. She looked at me for a long time, trying to understand. Then she said softly, "Va bene, allora mangiamo." Okay, let's eat.
Robert's drug addiction became too much to bear, and he and I eventually split up. My mother's support during three of the darkest years of my life grounded me, prevented me from being sucked into his vortex. Giuliana's and my bond, stronger than ever, gave us both the backbone, nearly twenty years later, to live through what would be her darkest time.
THE LAST ATTEMPT
After my sister recommends that we walk away from Liberty, we are left without options. Giuliana, despondent and disappointed, calls Exit Italia—the organisation that recommended them—to complain. The man on the other end says, "I'm done with this Liberty Life! From now on I'm sending people to Basel."
In Basel is Life Circle, a clinic founded in 2011 by Dr. Erika Preisig, who had once worked for Dignitas, and her brother, Ruedi Habegger, who were inspired to enter the business after helping their own father with his assisted suicide. The place is as professional as Liberty Life is fly-by-night, as efficient as Dignitas is dilatory. Research convinces me of Life Circle's dedication to their stated goal: to ethically and efficiently put to death a person without sacrificing their dignity. What's more, the medicine is administered via IV. No bitter taste. No need for chocolate.
What level of misery suffered by a loved one makes support for such a decision not an act of negligence but one of mercy?
Twenty pages of medical records are faxed to Life Circle's office along with all necessary documents. Included is a short statement witnessed by three non-family members—her friend Vera and two janitors from her building: "I have a terminal illness. I do not wish to suffer. There is no hope and I wish to die."
I call Dr. Preisig. "How soon can you make this happen?" I ask. Her reply: "May 20." Nine days away.
Giuliana spends her last week calling friends to say goodbye. She does not want last rites, a funeral, or a memorial service. She simply wants to disappear.
She's become, in the last week, uncharacteristically introspective. We've always talked voluminously, but mainly gossip. The deeply personal rarely intrudes. Now, with nothing but the deeply personal occupying her mind, she remains quiet.
One night, in a reflective moment, Giuliana asks me what she should expect when death sets in. How the fuck do I know? I think. Searching for a response that lives up to such an immense question, a line by João Guimarães Rosa pops into my mind: "People do not die. They become enchanted." So I tap dance. "I think your soul is going to leave your body, and it's going to be connected with everything in the universe and every living thing, including us. You'll be there for me and Christina."
This satisfies her. "And what are you going to do with my ashes?" she asks, returning to practical matters. Almost as a joke, I tell her about a Swiss organisation, Algordanza, that cleanses a person's ashes and crushes them under such intense heat and pressure that they transform into an actual diamond. She rejoices at the idea.
THE FINAL VOYAGE
As we pack for Switzerland, her real jewellery—piles of it, obsessively collected over the years—is left behind in Miami. There's no need to bring it; for her, the trip is one-way. Junior, however, is packed into his carrying case.
On the ten-hour overnight flight to Zurich on May 17, Giuliana's health deteriorates. At one point she needs to put on an oxygen mask. She freaks out, I freak out, and Junior freaks out. "This has got to happen," I tell my sister when we arrive at the airport, where she picks us up for the drive to Basel. "She is much more advanced that we thought."
Dr. Preisig, all thick braids and granny glasses, meets us at our hotel suite, probes my mother's stomach, and seconds my opinion. "It's spread. I can feel nodules," she tells my mother and then turns to me. "I'm glad you rushed this. I don't think your mother would have endured the flight any later." She is reassuringly calm and kind.
My mother takes in this news without concern; by this point she is on autopilot. The next day she tolerates the required visit from a psychiatrist. Her answers are curt. "Are you of sound mind?" "Ja." "Are you aware of what all this is going to mean?" "Ja."
After the psychiatrist leaves, my sister goes to the airport to pick up my mother's only surviving sibling, Annamaria, her husband, and my cousin. While she's gone, Mr. Habegger calls to inform me that the crematorium is backed up and that my mother will not be cremated 48 hours after her death, as planned; it might take up to ten days. Giuliana hears this and goes ballistic. "You're going to leave me in some refrigerator for ten days and when you come back you're not going to know whose ashes they are giving you!" she yells. "It could be a cow's!"
My fuse, already short, is now lit. "Do you really think that I came all this way, did all this bullshit for you, and would not see it through?" I shoot back.
Our family walks in on the screaming match and my uncle calms her down: "Giuliana, why are you wasting your last night worrying about this? Your children will take care of it. Let's enjoy each other."
My mother concedes the point. But she still won't let it go; in her mind, everybody is a fraud. "I have this part of a bridge in my mouth, and this is a gold implant," she says, opening her mouth to point them out, making sure we all see. "Look for them in the ashes to know it's me."
We laugh, a rare moment of levity. We order room service, of which Giuliana eats little. If there is still an inkling of the woman who always savours each bite of every meal, I can't find it. She has already begun to disappear.
Giuliana rises at 7:30AM. on the last day of her life. As we pack to go to the house in a residential neighbourhood of Basel where the procedure will take place, she is slow, deliberate. Her blond hair, as usual, is perfectly arranged. But the woman who could stop conversation simply by entering a room today chooses a simple cotton wrap and black leggings. She stuffs her identification papers into her Hermès bag. She gathers Junior in her arms and we depart.
My mother wants only my sister and me to be in the room for her last moments. She says she is worried that seeing the others will cause her to lose the courage to release the medication. But she is clearly afraid of the final moment. I convince her that the rest of our family should join.
Thus we are six, plus Junior, who enter the dimly lit room at 8:30 a.m., where we are greeted by Mr. Habegger and an EMT nurse. (Dr. Preisig's duties have taken her elsewhere.) A medication bottle sitting on the counter reads, "Pentobarbital—Dosis Letalis—Giuliana Schlempp, Miami Beach, USA." My mother lies on the bed while the nurse inserts into her arm a needle attached to an IV bag of saline.
Giuliana will be the one to roll the button that releases the pentobarbital into the line leading to her vein. But first, in accordance with Swiss law, she has to be videotaped answering a series of questions. Mr. Habegger aims the camera at her as the nurse asks her in German.
"Wissen Sie was diese Medizin ist?" Do you know what this medicine is?
Do you know what will happen?
"I will die."
"Do you want to change your mind?"
This is the question that has hovered for the seven months since Giuliana first broached the subject. Will she back out and join the statistics in a brochure?
Her answer comes quickly. Firm. Unwavering.
The pentobarbital is added to the saline, and without hesitation Giuliana rolls the button to activate the drip.
We stand around the bed—mute, in awe—holding her hand, Junior nestled between her legs.
She looks at me. "I'm not feeling anything."
A momentary panic sets in my mind, like a stage manager witnessing a missed cue. I can see it in her eyes: Alex, do something! That is our contract: The woman who gave me the gift of life is now, in that final moment, asking me to give her the gift of death.
And then she smiles and says, "Ecco sta arrivando."
Ah, here it comes.
With one last breath, surrounded by those who love her unto death, my mother, Giuliana Tela Schlempp, becomes enchanted.
From: Esquire US.