My husband chose to die…and I helped - The Jewish Chronicle

As the acclaimed writer and psychotherapist Amy Bloom first began to notice changes in her husband, Brian Ameche, she really wanted it to be a middle-aged, mid-life crisis of some kind. A passionate architect, Brian retired early from a new job he had been excited about. He stopped reading, began forgetting things and started carrying a paper calendar around the house. He became less engaged with the present and, instead, dwelled on the past. Slowly but progressively, their marriage was disrupted by his confusion and memory loss. Then, in 2019, a series of cognitive tests and an MRI confirmed that Brian, aged 66, had Alzheimer’s disease.

Two days later, he decided that the “long goodbye” of Alzheimer’s was not for him, writes Bloom in her deeply affecting memoir, In Love. He told her he wanted to die on his feet, not live on his knees and, “because you love me, you’re going to help me,” explains Bloom from her Connecticut office. Less than a week later, she found Dignitas, a Swiss non-profit organisation offering assisted suicide. And in January 2020, they travelled to Zurich where, at Dignitas’s clinic, Brian drank a lethal dose of sodium pentobarbital, dying calmly and peacefully, holding Bloom’s hand.

Ameche was clearly thinking deeply about his wish to control his death, says Bloom. He had seen the devastating effects of Alzheimer’s close up with a family friend, whom he had known and admired all his life. After receiving Ameche’s diagnosis, the couple spent a long weekend crying together, and at the end of it, Brian knew exactly how he felt and what he wanted to do, she says. “And I would say that being Brian, he probably knew even before the end of the weekend, just that I wasn’t ready to hear it.”

Bloom tried to dissuade him. “I said, ‘We don’t have to do it that way, I will take care of you, I will protect you.’ And he replied, ‘I know you can do it but that is not my choice. I don’t want to be in a memory care unit having faint connections to the world and to people.’” Before locating Dignitas, they investigated other methods, all of them risky: carbon monoxide poisoning, suffocation and acquiring fentanyl from a drug dealer, but, she writes, despite Ameche’s enthusiasm that as a resourceful person she would “do great in jail”, Bloom insisted she would not commit a crime for him.

As well as chronicling the impact of Ameche’s illness and the process they went through to arrange his death, the book is a love story. They were always “stickily close,” she notes, a couple who enjoyed food shopping with one another, even trips to the dry cleaners. They met in 2005, both in unhappy relationships, and suddenly their walks and talks at their local Democratic breakfast club shifted to talking in private. Eventually they decided to “blow up” their lives and be together, marrying in 2007. Bloom had three children from a previous marriage and four granddaughters, and Ameche, who did not have children, relished being a grandfather, telling her: “Never had kids and went straight to grandchildren. How lucky am I?”

What was Brian like? Bloom pauses for a moment. “He was just the big dog. He was a physically big guy. He had a big laugh and a big smile and a lot of warmth and a lot of enthusiasm. I think the thing that drew me most to him was that he was game. If I said to him, ‘Oh honey, there’s a drag queen parade in Coney Island and if we leave now, we’ll be there in time for the talent show,’ he’d be, ‘Let me get my hat.’ And I just loved that,” says Bloom, with a smile. “His motto was if there’s going to be a fight, throw the first punch. And I think that was actually very true about his Alzheimer’s too. This was not something where he was going to wait for it to bring him to a conclusion that he found unbearable. He was going to bring the fight to Alzheimer’s.”

For much of their marriage, there was great communication between them, which is part of what made the illness so painful, says Bloom. In some ways, it helped her see the symptoms, without understanding them. “This excellent communicator just disappeared.” His ability for nuance and insight vanished. At times, Bloom writes, it felt as if there was a glass wall between them.

It was important to Brian that she write about what they did. “First of all, I think because he was quite distressed and startled to realise how limited his options were, in terms of making decisions about his end of life here in America. And also, these had always been issues that concerned him.” Ameche had been a volunteer for Planned Parenthood since he was an undergraduate in college, because he believed in self-determination and people being allowed to act with agency and autonomy. “It was an issue that mattered a great deal to him before it was personal.”

Bloom is polite but our conversation is slightly stilted, which is hardly surprising given the subject matter. It must be difficult to publicise the book, I say, only two years after Ameche’s death. “It’s kind of wearing,” admits Bloom, with a short laugh. “But nobody put a gun to my head and made me. I could have written it for the therapeutic value or for my own memories or for my immediate family, but I did make the decision to publish because I thought it had value. And I should say that when Brian said please write about this, I know he didn’t mean please write about it and put it in your desk drawer. I know that he meant, share it.”

Bloom writes with heartbreaking candour, but without self-pity. She comes across as dependable, the organiser who exudes capability. I suggest there must have been times when the pressure felt too much. “Oh, I thought I don’t want to be doing this, all the time. I didn’t want it to be real.” How did she cope? With “a lot of crying”, and the invaluable support and help of close family, friends and her therapist, whom she refers to in the book as, “Great Wayne”.

Did her own therapeutic background help her support Ameche? “Probably a little bit, in terms of some of the training. You don’t put words in people’s mouths. You wait and see where it’s going.” But there were times when she could not understand the meaning of what he was saying. “And that was frustrating for both of us. It was one of the hardest things. Brian didn’t understand why I didn’t know, and I didn’t know how to help him make it any clearer.”

After several months of paperwork and interviews, Dignitas finally gave their application the conditional green light but no appointment date. The period of waiting was a mix of dread, sadness and relief. Ameche’s attitude was, “It’s not tomorrow, we can still go to the movies, go out for sushi,” Bloom says. “And I really did my best to stay with that. I don’t think of myself as riddled with anxiety, but it was pretty hard to keep it at bay and also just the grief. Part of the Alzheimer’s was that he felt it differently than he would have, had he not had the disease.”

Bloom was brought up in a “very Jewish, but not religious, family”. Religion itself was not a comfort to Bloom, she says, nor for Ameche, a lapsed Catholic, although her mourning process echoed Jewish tradition. “I didn’t formally sit shiva, but I literally followed all of the norms of shiva, without calling it that. Certainly, the forms of mourning that were meaningful to me were shaped by Judaism.”

Within weeks of Ameche’s death, the world was struck with Covid, and during the pandemic, Bloom’s daughter, her wife and their three-year-old daughter came from Brooklyn to live with her for six months. “My daughter said to me, ‘I know you had in mind a more Chekhovian period of grief in which you’d sit by the pond, staring into the distance,’ but actually their arrival was a great gift.” They quickly established a routine: Bloom babysat in the mornings and then she wrote In Love until dinner time, when they would all eat together. “Even now, when I think about it, I’m so moved and grateful. They made a difference to how I experienced the grieving process because I was in the presence of so much life.”

Inevitably, writing the book presented challenges. Besides grief, she says, other feelings repeatedly emerged. “One was anger. I was never angry with Brian, but I did sometimes find myself angry with football. [Ameche had played for Yale University.] He loved it.” She also learned to cry and type at the same time. “It’s not as hard as you might think. I suggest keeping a little washcloth with you at the keyboard.”

Does she believe that the ultimate act of love is enabling a partner to achieve the death they want? “I guess. I do feel if you love somebody and you’re committed to them, part of what you want to do is help each other live the life they wish to live. In this case, it was also the death Brian wished to have.

“I suppose if I found that to be a morally repugnant choice, it would have been harder for me, but I didn’t. I understood.”

In Love: A Memoir of Love and Loss (Granta Books) by Amy Bloom is published today

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