Her husband wanted to die. Amy Bloom listened, and was there to the end

It is a snowy Thursday morning, January 30th, 2020. Amy Bloom is sitting beside her husband, Brian Ameche, on a couch in an apartment in Zurich. Brian is telling Amy football stories from his youth, ones she's heard many times before. The room is immaculate. There are bowls of chocolates on the table. After a little while, they both say I love you and then Amy watches as Brian drinks a lethal dose of sodium phenobarbital. She kisses him all over his handsome face and holds his hands while he drifts into a deep sleep. She listens to his breathing change, watches his skin grow pale, and then he is gone.

In her new memoir, In Love, novelist Amy Bloom describes the events that took place from the time of Ameche's diagnosis with Alzheimer's, until his death by "accompanied suicide" with Dignitas in Zurich. It is a stunningly sad love story, told with honesty and humour – a book about death that is bursting with life.

Bloom (68) is an accomplished New York writer, the author of four novels and three short story collections. She is also a qualified psychotherapist. Speaking with her now on Zoom, it is clear that as a fiction writer, she is unused to being the main character. She has a calm, controlled presence, but the grief is still fresh.

The book was hard to write but it had to be written, she says. Ameche asked her to write it soon after his diagnosis.

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“Brian had big plans for me. He was very emphatic about it.” Bloom had kept notebooks throughout his illness, mainly to keep track of medical appointments. Sometimes reliving the experience was “close to unbearable”.

Bloom met Ameche in 2005. He was an architect who had played college football for Yale. They were both in their 50s, and in other relationships. She writes, “We fell in love the way some middle-aged people in unhappy partnerships and in small towns do.” They decided to blow up their lives to be together, and married in 2007.

He felt about a meal in an Italian restaurant the way people feel about money and good health – always better to have it

In a 2008 magazine article about her unexpected new husband, Bloom wrote, “We are both people who want cutmen and foxhole buddies. We see life as difficult and wonderful, requiring energy and stamina and occasionally guile.”

She didn’t know then how much of a foxhole buddy he would need her to be.

They were an unlikely match, she says. “But what I always used to say about Brian is that he was game. He was undaunted. If it sounded like a good time, he was up for it.

“I think if you’re lucky, the thing that you bring to meeting somebody later in life is that first of all, you should know yourself by then. Also, you understand that people don’t change. It is pretty much what it is.”

Bloom’s portrait of Ameche is of a large gregarious man, who loved Italian food, his grandchildren and his football. “He felt about a meal in an Italian restaurant the way people feel about money and good health – always better to have it,” she writes.

They lived a happy life together for over a decade in New Haven, Connecticut. Then Bloom began to notice small changes in Ameche's behaviour. He was forgetful, his vocabulary shrank, there was trouble with his work. She told herself it was typical male mid-60s, early retirement behaviour. He made a few off-kilter purchases for her: a $500 hoodie with a tulle hem. "There were occasionally these odd gifts," she says now. "But then, you also think to yourself, well, he's a man. He might have misunderstood. I think you always want to normalise it. You want it to be fine. At least I did."

Writing the story of how it all played out was useful to Bloom.

“I just missed so many things. I remember watching these [YouTube Alzheimer video diaries] a lot in 2017. Looking back I’m like, why was I doing that? I didn’t name it to myself at all. Part of what I saw were these things that were small, like his handwriting changing and I was really puzzled by that. When things went awry with his job, I remember being enormously concerned. I just kept thinking, I don’t understand what this means.”

Ameche became distant, withdrawn. “Before you even know what’s going on, you’re just like, why are things different?”

He always felt that people should have agency and autonomy about their lives. These are things that he really cared about

In August 2019, a neurologist confirmed their fears. Ameche, now 66, had Alzheimer’s and probably had had it for several years.

Within 48 hours of diagnosis, Ameche decided against a long goodbye. “I’d rather die on my feet than live on my knees,” he said. Then he asked Bloom to help figure out how.

Speaking about Ameche’s decision now, she says, “He always felt that people should have agency and autonomy about their lives. These are things that he really cared about. He had done a fair amount of end-of-life reading, and moral philosophy was interesting to him. So I think it was a quick decision. He knew how he felt about this. He said to me, ‘I don’t want to leave but I’m going to be leaving either way. I would rather leave the way I want to.’”

But how was that for Bloom?

“I did a certain amount of, I understand, I understand, but also I will take care of you, we will make the best of it. Brian already knew what this illness looked like. He said, ‘I don’t want to be the person who doesn’t know who people are, who is living in isolation being cared for until my body wears out. It’s not a life for you. It’s not a life for me.’”

Bloom talked about other options, said he could rely on her. Ameche said, “I know I can rely on you. I am relying on you now for this.”

“And then we were in it together,” she says.

And so Bloom began to research the options. The US has nine Right to Die states, however you must be medically certified as terminally ill with no more than six months to live. Ameche was ineligible.

She then went down Google search rabbit holes on end of life and euthanasia. She read about the legal ramifications if she were to assist him herself.

“It felt very surreal and the thing that always felt real was the grief. What he wanted was something peaceful and painless, with me with him. It doesn’t seem like it should be beyond the reach of most citizens.”

Then Bloom came across Dignitas, the Swiss non-profit organisation that has provided peaceful, painless, legal suicide to 3,000 people since it was formed in 1998. (Since 2003, 10 Irish people have made the journey there to end their lives.)

In the book, Bloom details Dignitas’ cumbersome procedures – the many forms to be completed, the documents to be gathered. There would be several interviews with Dignitas doctors, and Ameche must always display full comprehension of the process. The doctors will ask Ameche many times if he is sure this is what he wishes to do. Ameche always responds that he is sure.

Seventy per cent of people who get the provisional green light from Dignitas never contact them again.

That was not the case for Ameche. He did not falter in his decision. “There was a lot of how,” Bloom says. “But he was 100 per cent clear about the why. He was certainly very angry sometimes that we had to do this in this way and that it was so difficult where it could have been less difficult.”

Throughout the ordeal, we see Bloom reaching out for the support of the medical profession and is left wanting. “A friend of mine who was a surgeon said, ‘We are trained in med school to regard death as the enemy. We are supposed to fight for life, no matter what the quality,’” she says. “He felt that they were changing the training now, but for somebody like him, his job was to beat back death. I felt that was understandable, but maybe a little limited in its view for how that affects patient care.”

On one occasion when they need a letter from Ameche’s therapist to satisfy Dignitas requirements, she’s reluctant and instead tells them to focus on good times and seek out joy. They leave and Ameche says to Bloom, “She’s not on our team.”

“We had the support of our families,” Bloom says now. “Brian was completely uninterested in the approval of other people around this issue. What mattered to me was that his mother was okay with it, because I just felt for her so much.”

Having seen her own best friend struggle for many years with Alzheimer’s, Ameche’s mother, Yvonne, was relieved he would not go through the same. “She’s a very smart person and a very spiritual person. She felt very much that she wanted to support him in his wish,” Bloom says.

Where Bloom had three children from a previous marriage, Ameche had none, but he was very close to Bloom’s own granddaughters who called him Babu. He left note cards for them, which began, “I wish I could stay longer.”

I think we would both have been very happy for a miracle, but since there wasn't going to be one, I think we were both just committed to doing this really difficult climb together

Even when it was clear that Dignitas was the route Ameche would take, there was still the question of timing. Bloom mentions a phrase sometimes used in end-of-life conversations, especially in relation to dementia diseases, “A quarter to midnight. That’s when you want to leave,” she says. “Early enough, but late enough. The difficulty, of course, is that nobody knows when that’s going to be.

“For Brian, the thought of waiting too long was very distressing. And although we all know people with dementia have good days and bad days, the good days are still part of going downhill. We don’t know when your standard for a good day will become something quite different than it had been six months ago. His feeling was that if it was a choice between leaving a little sooner than maybe he absolutely had to, or being too late, it was not going to be too late.”

Ameche was raised Catholic, and Bloom is Jewish, but they weren’t religious people. Still, Bloom says, “It didn’t stop me from putting out a lot of requests to the universe. You know?

“I think we would both have been very happy for a miracle, but since there wasn’t going to be one, I think we were both just committed to doing this really difficult climb together.”

They were pragmatic when they met strong opposition to their plan from friends. “We did our best to say to people, we 100 per cent respect your right to have your feelings and your opinions, but the kind thing would be not to share that with us. That by and large worked out okay.”

Did it affect her relationships with those people now? “I think at this stage of my life, I lean pretty hard towards forgiveness. People make mistakes, and they don’t always say the right thing. That includes all of us.”

For much of that time, Bloom was immersed in the planning. When she did fall apart, she did so in a “time limited fashion. I saw the sunrise every morning. I never slept past five. I was trying to contain my worry, but it was difficult to contain.”

In the book, Bloom writes about that trip to Zurich that was unlike any other. In the airport before their flight, she still buys a lipstick, and Ameche some sweets. Thrilled at the rare and distracting luxury of flying business class, they still gather up the little freebies to take with them. In the hotel in Zurich, Bloom tastes “the metallic tang of almost normal”.

Soon after Ameche died in January 2020, Covid announced itself to the world. Bloom had expected to be alone in her grief, but her daughter and her family came to live with her in lockdown. They stayed for five months. “One of my kids said, ‘I know you are planning on a long Chekhovian widowhood staring longingly into the distance, watching the leaves fall.’ Apparently not. I never would have arranged it, but it was extraordinary. I had this little three year old running around the house bossing everybody. It was very clear to me that one can move forward with the grief.”

Bloom’s hope for the book is that it might “make it possible for people to think about and talk about this a little bit more than they have been able to. When Ameche said, please write about this, he meant, I want people to think about this. I want them to look at this more. I want them to know.”

Bloom tells me a story about a shoe shop she frequents in New York city, one that caters to "old ladies and bunions". She was sitting between two women, one "unbelievably glamorous, Sophia Loren type, my kind of girl" and another lady with piles of boxes. "The lady with the boxes says, 'I'm so sorry that I'm taking so much time, but I limp, and so it's a problem for me.' The Sophia Loren look-a-like says to her, in this strong Hungarian accent, 'Darling, we all limp.'

“And I thought, that is correct,” Bloom says. “We all limp and you move forward in life with whatever grief you hold and whatever loss you hold, and everybody limps.”

[ online ]

In Love: A Memoir of Love and Loss by Amy Bloom is published by Granta