Why I took my husband to die at Dignitas

On the plane we enjoy the settling in and the attention of the flight attendants; no one loves business class more than people who always fly coach. We are smiling from the moment we board and as soon as we get our beverages (in glasses!) we toast my sister and brother-in-law, who are paying for our flights.

Then we toast each other and we say “Here’s to you” a little hesitantly, instead of what we usually say, “Cent’anni” (“May we have a hundred years” — a very Italian toast). There is no cent’anni for us; we won’t make it to our 13th wedding anniversary.

We are both 66. We fell in love the way some middle-aged people in unhappy partnerships and in small towns do: we kept running into each other. I overlooked his bad haircut and aviator glasses. I’m sure he had to overlook my lack of interest in sports and my impatience (Brian could talk about a plastic gazebo or additional parking at the library for hours). We had been walking together, since our partners were not walkers, and talking together in public, at our local Democrats’ breakfast club, and then, suddenly, talking in private.

He took my hand. He said, “What’s your family like?” I said, “Jews from New York. You?” He said, “Well, we’re a football family. We have three Heisman trophies in my family.” I said, “What’s a Heisman?” and he kissed me. I kissed him back and, sensibly, we avoided each other for the next year.

After a year, and some martinis in New Haven at the end of the day, he asked me to take a walk with him. He said, “I’m not stupid. I know how this will end. You’ll tell me we should not do this to the people we love, or I’ll tell you, and we will go back to our lives, where we should be. And I will never get over this. Or we blow up our lives and be together. I just want to say this, before we walk back to our cars. I know who you could be with. Someone rich, someone fancy. But I know who you should be with. You should be with a guy who doesn’t mind that you’re smarter than he is, who doesn’t mind that most of the time you’ll be the main event. You need to be with a guy who supports how hard you work as a writer and who’ll bring you a cup of coffee late at night. I don’t know if I can be that guy,” he said, tears in his eyes, “but I’d like a shot.” We married.

Two years ago I gave Brian a new script of mine to read and my husband, my cheerleader, TV lover and inveterate script reader, didn’t read it. In the years we were together, Brian read everything I’d ever written, within days of my finishing. After a week I asked about the new TV script. Brian said that he hadn’t got around to it. He sounded a little puzzled. Weeks went by and he didn’t mention it. I steeled myself and asked him about it again and he said, with no chagrin and not much interest, that the format was too difficult to follow.

He grumbles all the time; he grumbles when the emails regarding his men’s book club come in: there are too many schedule changes; he doesn’t know which house the meeting’s at. He goes to a meeting on the wrong night and grumbles some more.

I was lucky — I guess — that in March 2019 Brian got worried about his memory loss after he had hip surgery and was willing to get tested, mostly because he thought and hoped his poor memory might be just a bad reaction to the anaesthesia used. Since he was now worried, I could finally say I was worried too. Still, his memory loss felt sudden: names disappearing, repetition, information turned upside down, appointments and medications scrambled. Suddenly, it seemed, we argued endlessly about everything.

A gregarious man, he didn’t want to see friends, except to fish. He now talked only about the past, his childhood and football. I could not steer him to any other subjects.

One spring morning I’d been weeping because Brian seemed so distant and, in that moment, weeping the harder because, although I could see that he was concerned and truly sorry he had upset me, I could also see that he didn’t really know why I was upset.

It took a neurologist less than an hour to give Brian a mental-status exam and inform us that he almost certainly had Alzheimer’s and had probably had it for several years, judging by his high IQ, his struggles with balance and proprioception, and his poor performance on the exam.

It took Brian less than a week to decide that the “long goodbye” of Alzheimer’s was not for him. He said, “I want to die on my feet, not live on my knees, and you will help me because you love me.” It took me less than a week to find Dignitas, at the end of several long Google paths. Even as a foreigner you can apply for an accompanied suicide, if you meet their criteria: be of sound mind, have medical records supporting this, have $10,000 to commit, and be sufficiently mobile to get to the outskirts of Zurich. They absolutely will not accept anyone who cannot clearly make this choice, with full comprehension and understanding, from beginning to end, I am told.

You fill out the forms, write the essays (a biography and a few paragraphs on why you wish to have “an accompanied suicide”), and send them the money and a pile of documents — in our case, as Brian has been having therapy, they want a report on his mental health from his psychiatrist. You show up in Zurich and they interview you twice, and you bring all sorts of identification including dental records, so it’s not a pain in the ass for the Swiss police to identify the body.

By the time we left for Zurich, Brian was forgetting the names of our grandchildren, mixing up the dates of all kinds of things and he couldn’t find his way through the supermarket.

ELENA SEIBERT

Monday, January 27, 2020

We land in Zurich and the hotel’s car service takes us to the pretty hotel in the cobblestoned Old Town section. I feel shifty and out of place at the hotel’s front desk. Brian wanders around, in and out of the lobby, and when I see him walk through a pair of swinging doors at the end of the hall while I am searching for our passports my stomach hurts, as it does every time he leaves my sight. When he comes back a few minutes later I’ve pulled myself together. Every time the concierge asks me a question, I fumble like a suspect.

Why are we here, business or pleasure? Would we like a map of all the stores on Bahnhofstrasse (Gucci, Fendi, Hublot, Cartier)? May they show me the bar and the library? I want to say to Brian that it reminds me a little of a hotel we loved in Amsterdam, but I am afraid that he won’t remember the trip, the hotel. I am afraid that he won’t but he will pretend he does and I won’t know if he does or he doesn’t, which is awful, or I will know he doesn’t, which is also awful, and I don’t say anything, which is usually the choice I make now.

In our room we stand in front of the big window for a few minutes and I taste it, the metallic tang of almost normal. If it was truly normal we’d unpack and shower. Then we’d get into bed and nap or make love (there’s always a lot of Viagra to use up; the man stocked up on Viagra the way my mother hoarded canned goods — just in case), or we’d bundle ourselves out the door to a restaurant. This time, we stare out the window and we both sigh. We undress and crawl into bed. Brian sleeps for a couple of hours.

I worry, sometimes, that a better wife, certainly a different wife, would have said no, would have insisted on keeping her husband in this world until his body gave out. It seems to me that I’m doing the right thing in supporting Brian in his decision, but it would feel better and easier if he could make all the arrangements himself and I could just be a dutiful duckling, following in his wake. Of course, if he could make all the arrangements himself, he wouldn’t have Alzheimer’s — and if he had wanted to make all the arrangements on his own, he wouldn’t have been Brian. I walk this loop in my mind as I wake up and unpack.

We have a day to fill before our first interview with Dr G, the Swiss doctor from Dignitas who will conduct two interviews with Brian, one tonight and one on Wednesday, before our appointment at the Dignitas apartment on Thursday. We’d been informed, in our last phone call with our Dignitas contact person, Heidi, that we’re “on our way to the provisional green light”; and then we got the more official email, stating that we had now received the provisional green light and a Swiss doctor would write the prescription for the sodium pentobarbital that Brian would drink for his “accompanied suicide”.

Sodium pentobarbital is a common, once very popular, barbiturate and central-nervous-system depressant. An overdose will certainly kill you and it will kill you painlessly; in less than a minute you fall into a light sleep, in ten minutes, a deep sleep. In 20, the heart stops.

If Brian does as well as expected in the interviews, with Dr G checking on his discernment and determination, we’ll get the full green light on Wednesday and go to the Dignitas apartment on Thursday. (As my sister said, “It’s like you do everything you possibly can to get your kid into Harvard and when you do, they kill him.” Ellen was horrified it came out of her mouth and I was horrified to hear it, but she wasn’t wrong.)

Monday evening, January 27, 2020

I hope to be patient, stoic and demure with Dr G when he comes to our hotel. He has phoned me twice and moved our interview twice and we are now, oddly, settled on Monday at 10pm. The late hour makes it seem shadier and more important. I worry that Dr G will stop at the front desk and they will see that he’s here to interview Brian, to give him the medical green light for his appointment on Thursday — and someone, some well-meaning, life-affirming bellhop or night manager, will stop us. No one does.

I want to demonstrate support, of the right kind, whatever that may be. Fortunately I didn’t marry for money, and no matter how hard the Swiss authorities dig it will be clear I do not have “a financial interest or benefit” for marrying Brian or for supporting his ending his life. Do they look for signs of true brokenheartedness and not just mere resignation? This “evidence of financial interest or benefit” is, as it turns out, the loophole on which all of Dignitas’s services depend. Swiss law says, explicitly, that it is illegal to assist or encourage a suicide if you have a clear financial interest; the law says “selfish interests”, which seem to me to cover more than cash in the event of the person’s death. However, if you do not, you can assist someone in ending their life — and that’s how Dignitas has done it for more than 3,000 people so far.

When the doctor knocks on the door I almost scream. Dr G is a small man with large, lovely, mournful eyes. We all shake hands and Brian and Dr G sit across from each other. I ask Dr G if I can stay for the conversation and he looks surprised. He says, gently, that of course I should stay, as this all concerns me as well. I begin crying and both men look at me kindly. I pour myself a glass of water.

Dr G asks about our flight. He opens a folder and says to Brian, “After I read your application I knew I would see you, but I didn’t think it would be this soon.” Brian says, “It’s not a big window. I mean, no one knows how long they have, how much time they have, to make this choice.” Dr G looks like he might argue but instead he says, “You’re absolutely right.”

No one, including the doctors, can predict how quickly or slowly Brian’s particular case will progress. Soon after his diagnosis he said to me, “I’d rather die on my feet than live on my knees.” He wanted to shorten his period of great suffering and loss and he needs to be medically competent to do so. A neurologist told us that the Alzheimer’s trajectory can be 8-12 years and Brian has had symptoms since 2017. I have watched enough Alzheimer’s diary videos that it’s very clear if he doesn’t do this, the end of the body will be long after the end of the self.

Dr G says he began helping Dignitas (he is an ophthalmologist) after his father’s death from Alzheimer’s, which was long and painful, in every way. He says Dignitas uses eight doctors and they are all pretty busy.

He says to Brian, “I will ask you several times, many times, if you are sure this is what you wish to do and I want you to understand that at any time, at any time between now and the final act, you are free to change your mind and not do this. I hope you will not do this,” he says softly, and Brian nods. “So,” Dr G says, “are you sure that you wish to end your life on Thursday?” Brian says that he is sure. I start crying again and, thank God, both men ignore me.

Dr G smiles and nods. “It seems to me,” he says pleasantly, holding up the folder, “you don’t believe in anything, Mr Ameche.” Brian laughs and says, “I believe in a lot of things, but religion and the afterlife are not among them.” “Well,” Dr G says, chuckling, “you’ll find out before I will. Let me know.” Brian smiles.

Dr G’s tone changes. “Let me tell you what will happen: you will arrive at our apartment building in the suburbs of Zurich, in the morning, by 10am. Do not be late. You will be greeted by two people from Dignitas. They will invite you in. You can take your time,” he says. “There will be no rushing.” He looks at me as if he can tell I am the rushing sort, and I want to assure him that every minute of our time in Zurich is me trying to push back the clock.

“There is some paperwork. There are chocolates. They will give you an antiemetic, so you will not vomit. You have up to an hour after that to make your choice about drinking the drink. If you need more time, they will administer the antiemetic again. And again, you will have about an hour after that to drink the drink. After you drink it — it is a little bitter,” he says, and I wonder how he knows. “After you drink it you will fall into a light sleep, then a deep sleep. Then it will be over. Mrs Ameche, you can sit with him for a long time.” (I’m glad he calls me Mrs Ameche. I know Brian always gets a kick out of that.)

Brian nods attentively. Dr G says, “At any time in this process, you may change your mind. Right now or Thursday morning. No one will be surprised or distressed. We will all be glad for you.” (I don’t know why this would be. Perhaps I would be glad too, but only if it meant the spell was broken and my whole husband was returned to me and to himself, and these last years turned out to have been just a terrible test, one poisoned apple after another, to prove that my darling deserves the life he had before.)

Brian shakes his head. “I know what I’m doing,” he says. “This is the right thing for me.” Dr G nods. “I see that,” he says. “But I will keep asking.” Brian and I sit back down after he’s gone. I say that Dr G seemed nice and Brian agrees. Brian says, “It’s going OK,” and I agree. We sleep side by side, fingertips touching.

Brian Ameche in 2016, before he decided to reject the ‘long goodbye’ of Alzheimer’s

COURTESY OF AMY BLOOM

Tuesday, January 28 and Wednesday, January 29, 2020

We shop, we go to dinner, we meet my oldest friend, who has flown in just to fly home with me when I have to travel without Brian. Her only job is to get me on the plane and home to Newark airport without any major f***-ups.

We have two more days to fill. We take walks. We chat listlessly. We sleep after every meal. I would like to have some heartfelt, leaf-shaking conversations, the way I imagine some people get to, at the end of life. (I imagine this despite having sat at multiple deathbeds, at which there definitely were no last-minute confessions, assertions or expressions of deep feeling. The people dying were often in pain and exhausted or heavily medicated. My father patted my hand and thought I was my mother. My mother grabbed my arm and said, “Jesus, honey, do something about the pain.” As my old man used to say, frequently, regarding my expectations: “The triumph of hope over experience.”)

Thursday, January 30, 2020

The night passes and the next morning we have a car take us to Pfaffikon, where Dignitas has its apartment, or house — I couldn’t really tell. It’s a residential structure in an industrial park. Two nice women in nice clothes greet us. They have dressed for the occasion of shepherding us across the river and they take it seriously. I have never been treated with such seamless, attentive tact. They walk us in, up a few steps to the door, and I see a snow-covered garden. They lead us into a large, odd, immaculate room.

There’s seating in every corner — two small armchairs, a large pleather recliner, a pleather sofa and a hospital bed as well. It dawns on me later that it’s important everything that can be sat on or laid down upon be washable.

In the centre of the room there’s a table with several chairs. The ladies bring our paperwork to the table and point out the many bowls of chocolates. They review all the steps, which Brian and I can now both recite. They look at him closely and say, “At any time in this process, including after you drink the antiemetic, you can choose not to do this. We will be very supportive of you changing your mind, rest assured.”

We are assured. The only sign of reluctance on Brian’s part is what he warned me about — his making conversation before taking the sodium pentobarbital. He’d said to me that he thought he might be inclined to “just bullshit around for a while” when the time came to take it. “I know I have to go,” he said. “I know I’m going. I’m ready. I’m just not going to hurry.”

He doesn’t hurry. He drinks the antiemetic and gets comfortable on the couch. I sit next to him, holding his hand, but I have to let it go because he’s gesturing while storytelling. The stories are all about football at Yale and his coach, Carm Cozza, and I could tell them with him: Brian and a friend winding up in jail because of a young, dumb fight in front of the Anchor Bar, and Carm, stern and forgiving, bailing them out; Brian talking about quitting football because he didn’t get to play enough in his first season and Carm telling him that he, Carm, would let Brian play when Brian was good enough and not before, and Brian resolving to be good enough; Brian’s father and Carm playing handball together one time — his two fathers.

I cannot manage to look interested in these stories because I’m not (Brian says nothing about his life, about our life, about our love, about the children and grandchildren, nothing about his career as an architect, the beautiful public housing he designed and cared about so deeply or the work he did for conservation and open spaces or even, and you know I must be reaching here, about fishing), but I do try not to look like I’m in agony, which I am.

The ladies wait in the back room (a kitchen, I think), and after about 45 minutes they come out again. They tell us that the antiemetic has now worn off and if Brian wishes to continue (“I do,” he says), he will have to take it again. They say, “You can take your time,” and I roll my eyes because of course he will, he always does, I think, as if we are in some other room, on some other occasion, and then I remember where I am and I’m ashamed of myself.

Brian smiles slightly. “What time’s your plane?” he says, and I have never felt so bad about being me in my entire life. He takes the antiemetic again and the ladies put an airplane pillow around his neck. Brian falls silent and now I long for the football stories. I take both of his hands and he lets me.

“IloveyouIloveyouIloveyou,” I say. “I love you so much.”

“I love you too,” he says.

He drinks the sodium pentobarbital. I kiss him, all over his handsome, weary face, and he lets me. It is impossible to think about the next 20 minutes. I keep my eyes and hands on him, as if I’ll forget what it is like to breathe next to him or feel his presence. (I don’t, not for a minute. I hear his breathing when I go to sleep and I feel his body heat when I wake up.)

He falls asleep holding my hand and his head falls back a little on the neck pillow (whose purpose I now understand). His breathing changes and it’s the last time I will hear him sleeping, breathing deeply and steadily, the way he has done lying beside me for almost 15 years.

I hold his hand. I can still feel its weight and warmth. His skin colour changes, from ruddy to paler pink. I sit there and sit there, as if some other thing will now happen. He is quite pale and I see he is gone from this world. I sit, holding his hand, for a long time. I get up and wrap my arms around him and kiss his forehead, as if he is my baby, at last gone to sleep, as if he is my brave boy going on a long journey, miles and miles of Nought.

© Amy Bloom 2022. Extracted and abridged from In Love: A Memoir of Love and Loss by Amy Bloom, to be published by Granta on April 7 at £16.99

A legal matter of life and death

What are the rules on assisted dying in the UK?
Although suicide is no longer a crime in itself in England, Wales and Northern Ireland, assisting someone to take their own life is punishable by up to 14 years in prison. The situation is more opaque in Scotland, where no law explicitly bans the practice, but the most senior Scottish judge clarified in 2016 that directly causing someone’s death to relieve suffering, such as by administering a lethal injection, could constitute murder.

Will the rules change?
A 2021 YouGov poll found that almost three quarters of Britons want assisted dying to be legalised, but only 35 per cent of MPs were in favour. Last September the British Medical Association abandoned its longstanding opposition to doctor-assisted suicide and several MPs have also changed their position.

During the first debate on the Assisted Dying Bill, the latest of many attempts to legalise assisted suicide for terminally ill patients, the crossbench peer Frank Field movingly revealed his own terminal illness. “I changed my mind on assisted dying,” he told the House of Lords in October, “when an MP friend was dying of cancer and wanted to die early before the full horror effects set in, but was denied this opportunity.”

In Scotland an MSP has launched a public consultation for a similar bill on assisted dying backed by a cross-party group of MSPs. Advocates hope the bill will be passed when it comes to a vote in Holyrood later this year. A similar bill was rejected in 2015.

However, opponents such as the UK group Care Not Killing claim vulnerable people will be pressured into assisted suicide by factors including a desire to ease hospital burdens and persuasion from inheritance-hungry relatives. Other opposition comes from religious groups.

What are the rules in other countries?
Spain legalised assisted suicide for Spanish nationals and legal residents in 2021, while Austria legalised the practice earlier this year. France is moving towards legalisation.

European countries that allow euthanasia (the act of ending a person’s life to relieve suffering) and assisted suicide (the act of helping a person to end their life) include Belgium, the Netherlands and Luxembourg. While there are no citizenship or residency requirements for these treatments, in practice it is difficult for Britons to access them because they require a longstanding relationship with a local doctor.

The Dignitas option
Switzerland allows assisted suicide but not euthanasia. At Dignitas the clinic provides a lethal cocktail that patients with terminal or severe mental and physical illnesses must drink themselves. Prospective patients must prove they are of sound judgment, submit a formal request including a letter explaining why they want to die, and have their wishes approved by doctors who are not associated with Dignitas. In practice this means patients — particularly those with neurodegenerative diseases — often have to travel earlier than they might have done, while they can still meet these requirements and make the journey.

The retired British GP Anne Turner died at Dignitas in 2006, despite her diagnosis of progressive supranuclear palsy giving her more years of adequate life. “In order to ensure that I am able to swallow the medication that will kill me, I have to go to Switzerland before I am totally incapacitated and unable to travel,” she said. “If I knew that when things got so bad I would be able to request assisted suicide in Britain, then I would not have to die before I am completely ready to do so.”

Since 2002 498 Britons have ended their lives at Dignitas. The process, excluding travel expenses, reportedly costs between £3,600 and £6,400, depending on whether funeral or family arrangements are also handled by the clinic.
Matthew Kayanja