Dementia and the Right to Die

A talk with Amy Bloom, author of In Love: A Memoir of Love and Loss.

In January 2020, Amy Bloom flew to Switzerland with her husband of nearly 13 years, Brian Ameche, and held his hand as he took a fatal dose of sodium pentobarbital. Ameche had been diagnosed with early-onset Alzheimer’s months earlier—although symptoms of the disease (forgetfulness, confusion, withdrawal) had been creeping up on him for years—and he made a quick and steadfast decision to end his life. (His exact words, per Bloom: “I’d rather die on my feet than live on my knees.”) The problem was, Ameche couldn’t make the arrangements on his own. He needed his wife’s help. 

In her new(ish) book, In Love: A Memoir of Love and Loss, Bloom writes with scorched-earth honesty about how she provided that help. 

The job wasn’t easy: In the U.S., the nine states that have right-to-die laws make it nearly impossible for anyone, let alone a person with dementia, to exercise their right. Prerequisites include a prognosis of no more than six months (as confirmed by two doctors), mental competence, and proof of residency in the state. These laws are “intentionally eye-of-the-needle,” Bloom writes. “Practically speaking, you have to be damn close to death’s door to get a doctor to swear you’ll be dead in six months.” 

Outside the U.S., Bloom landed on Dignitas, a nonprofit organization in Zurich that provides assisted death to anyone with a terminal illness (or old age or unbearable pain), so long as that person can consent to the choice up until the day of their death. Applying to Dignitas came with its own hurdles—doctors who weren’t cooperative, certificates that were hard to track down, and an administrative pace that didn’t always match the urgency of the situation, which was this: Ameche had a progressive disease that would diminish his cognitive abilities over time, and he needed those cognitive abilities to prove that he was of sound mind to consent. The clock was ticking.

Bloom, a celebrated novelist and short-story writer, and a former clinical social worker, wrote In Love at her husband’s request. “Brian had been very clear to me that he wanted me to write the book, so I felt some obligation to write it,” she told me over Zoom on Tuesday. “I had not longed to write a memoir. If God is good, I will not write a memoir in the future.”

Below, we discuss how dementia can affect a marriage (Bloom and Ameche wed in midlife), what she’s learned from her experience, and why she believes in a person’s right to choose death. The conversation is by no means comprehensive—there’s loads of literature around the ethics of assisted death, and this talk barely scratches the surface—but perhaps it will get you thinking. That’s the effect In Love had on me. (It also made me sad, angry, and occasionally uncomfortable. I recommend it.) 

One reason I was compelled to read the book is that it’s a love story. I’ve experienced having a parent with dementia, but not a husband—and I wanted to understand how those experiences might differ. How do you think they do?

Well, you have your own experience with a parent, and that is certainly a very powerful experience, but you are responding to the need to care for somebody who has cared for you for many years, who you have known your entire life. When it’s a marriage, most of the time you’ve known each other as adults.

Not always, but often, dementia for the parental generation is something that might start in their late seventies or early eighties. For early-onset in a spouse, you’re looking at it starting in your fifties, in your early sixties, which is very different. You’re sort of in the middle of your life together. And it’s your life together. [That’s not the case] with a parent, unless you have lived with your parent your whole adult life. 

So what does that do to a marriage?

The person wakes up in the morning and is puzzled about something that wasn’t puzzling to them the day before. They get lost in the grocery store. They forget somebody’s name. They get really irritable. Which doesn't always happen—some people are their sweetest and kindest selves. But, you know, your marriage is being altered from the inside out. This is your partner. This is the person that you are counting on to fill up the car before it goes on empty, or to run an errand, or to take care of their own life in some ways. 

You recall a time, pre-diagnosis, when Brian brushed you off when you asked him to read a script you wrote, despite him ordinarily being your biggest cheerleader. In hindsight, you understand why things like that happened. But at the time, how did you experience those moments?

I experienced them as peculiar, because Brian and I knew each other quite well. I don’t think I had a lot of illusions or fantasies about who he was. I knew his strengths and his less strong areas, and he knew mine. And so, with the script, I was like, “I don’t understand.” He said the formatting was very confusing, and for somebody who had read a lot of scripts, I just found myself really puzzled by that. 

Did getting a diagnosis provide some relief, like at least then you had an explanation?

I wouldn’t say so, although I really encourage people to [get a diagnosis]. If you’ve had a year thinking about your spouse, “What is going on?”—go to the doctor is what I would always say. And the reason I would say that is not because there’s any useful treatment, because there isn’t. And not because there’s necessarily any useful medication, because there isn’t¹. But because if you want to have meaningful conversations with your spouse about their end-of-life wishes and their wishes as their illness progresses, this is your window. You don’t want to wait five years. 

You were lucky in a way—although I hesitate to use the word “lucky” to describe any part of this experience—that Brian wasn’t resistant to getting a diagnosis and that he had enough insight to accept it. Because that isn’t always the case. 

Some people wait a lot longer. We had already waited, I’m sure, at least three years. But if Brian had not been the kinda guy he was, I would have been doing what lots of spouses do, which is bring your spouse to your primary-care physician and try through a bunch of winks and nods to get the primary-care physician to give them a Mini-Mental State Exam and bring up the issue, that kind of thing. But people will put that off for a long time, which I understand.

When Brian said to you, “I’d rather die on my feet than live on my knees,” did you accept it right away?

No, I mean, I couldn’t accept it right away. Because even though I knew him, and I knew that this was very much his style—he was a very “lead, follow, or get out of the way” kind of guy—I wanted him to know that I would take care of him. We had been through a couple of things where I’d had to take care of him before. He’d had two hips replaced, he’d had a hernia. And I wanted him to know that if he decided that he wanted to run the course of the illness, I would take care of him, I would keep him at home as long as I could, I would get us the help we needed, and that we would be alright. But he was just not at all interested in that. 

What advice do you have for people who want to help a friend in a position of caregiving? What helped you?

I would say if you wish to be genuinely supportive to a friend who is a caregiver under any circumstances, you want to do things that are specifically useful. To say to a friend who’s under extreme duress, “Anything I can do, let me know”—don’t bother. I realize it’s going to make you feel better, but it’s completely useless. It would be better to send them fifty bucks. Not that I think you should send them fifty bucks. But it’s better to say, “How about if I come walk Fido on Tuesdays and Thursdays at 3? Would that be convenient?” Or, “How about if I arrange for a delivery of whatever your favorite food is every Monday night? Would that be helpful?” As opposed to, “Oh, anything you need.” 

At one point in the book, you recognized your own shortcomings as a friend. You saw your editor at Brian’s memorial service, and you realized that her husband also died, and you’d maybe asked her twice about how she was doing. I thought that was a relatable moment. Have you had any more epiphanies like that since Brian’s death? 

I guess my epiphany, which is probably both from everything Brian and I went through and also just getting older, is that we’re all assholes. It’s just a question of whether you’re going to make an effort to fight it or not. Every single person in this world is going to say the wrong thing at the wrong time, make the wrong gesture, imply the wrong thing, stick their foot in it. So the only solution to that is either to never go out and never communicate, or learn to say you're sorry in a big way, and be a little more forgiving. Because you’re going to do it. Just like they said the wrong thing to you, you’re going to say the wrong thing to someone else. 

Well, now that you’ve said that, I’m going to ask a question that I was worried might come off as insensitive. In instances where you were describing other people with dementia or people in memory care units—I felt almost compelled to defend the value of their lives. Not against you, but I guess against society in general. Because we have such little regard for people with dementia. We don’t treat them with dignity. And not everyone who gets dementia can or will make Brian’s choice. It feels important to defend them, not just avoid their fate. Is that something you think about? 

I give this a lot of thought. The real answer is we need a different healthcare system. It’s not a person-by-person problem. It’s like, of course we could take better care of people with dementia. And of course they could live with some dignity until the very end. The reality is at the very end, there’s not much there to be preserved. However, it’s certainly the case that the person could be comfortable. Could be in a pretty room. Could have a breeze and some sunlight on their face. Could not be tied to their bed because nobody has the time to take care of them. Could not be force-fed, for example, or not have a feeding tube put in them because the nurses do not have the time to sit there with a pudding snack. 

This is not about “did you do a good job” or “did Suzie Q do a good job.” This is a healthcare system that basically says, “We really need to respect all forms of life, which is why we’re not going to give people any choices about their life or their death. Also, no dignity and no financial support. Good luck to you. We hope you do a great job as a human being, and particularly as a female human being, because that’s really what you’ve been put on earth for—never mind the fact that you’re not going to be able to hold your job, that you yourself are going to incur major health damage in that ten years of caregiving.” Nobody gives a shit. There are no healthcare policies that take into account the depth of difficulty that exists for people with dementia, the length of time that they live with it, or the phenomenal cost borne by the family. 

I believe in choice. That means I support Brian’s choice. I also absolutely support the other choices that people make. But I would like to see, in the United States of America, some kind of healthcare that takes into account people’s realities, and not just the private, profit-making care system. 

Do you consider the book a piece of activism? 

I don’t mind if people take it that way. But I don’t see myself as an activist in this arena. I’m very happy for the book to be used by the people who think it makes a good argument. I’m delighted. But I was also delighted when I had a geriatric physician write to me and say, “I bought ten copies of the book. I’m just leaving them in the waiting room.”

Did writing the book heal you in any way?

It probably did, but I’m a writer, so it’s kind of my job. Maybe the healing part was that, in addition to being grief-stricken, I was also blisteringly angry at certain people, at certain medical help that we did not get. Not that I took it personally. Nobody gets medical help that they can use in these circumstances, by and large, and I understand that. But still, it’s not a good system. And writing that was a little bit healing to me, because I was so angry. 

I could feel that at times reading the book, like when you wrote about how you didn’t want to hear another word about the benefits of blueberries and exercise. Which I very much understood.

It’s like, listen, I’m an old lady, I’m a huge fan of moisturizer. But I am not under the impression that it will reverse the aging process, prevent death, or prevent a serious disease. It will just mean that my skin will be a fraction more hydrated when the terrible thing happens to me. And I’m okay with that. I still use moisturizer. 

How is life today?

One of the things I really learned [from this experience] was you never know what’s going to come your way. If it’s a sunny day, I’m gonna eat lunch outside. If it’s a beautiful day, I’m gonna sit at the picnic table, I’m gonna look at the garden, I’m gonna be present in that moment. And I felt like that was a lesson that has stuck with me. Do not put it off. I don’t mean just “don’t put off the trip to Hawaii,” but don’t put off forgiving the old friend who said something shitty to you eight years ago. You know what? Forgive them.

This interview has been lightly edited and condensed for length and clarity.

1. Some medications do exist. To Bloom’s point, they aren’t great—they only work to possibly delay symptoms in some people, and there is no cure. But you or your loved one should talk to your doctor about options.