After an Alzheimer's diagnosis, her husband asked for help to die with dignity
Shortly after he was diagnosed with Alzheimer's disease in 2019, architect Brian Ameche, then in his mid-60s, told his wife, novelist Amy Bloom, that he wanted to end life on his own terms, before the disease robbed him of everything.
Other segments from the episode on March 8, 2022
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. My guest, Amy Bloom, has written a new memoir that begins with going with her husband to Zurich to end his life. Why Zurich? Because even the few states with right-to-life laws in the U.S. have such stringent requirements, he didn't qualify. He'd decided, after being diagnosed with Alzheimer's in his mid-60s, that he wanted to end his life while he was still himself. Although by the time he actually did it, his Alzheimer's had progressed to the point where he'd lost a lot of memory and cognition.
Bloom and her husband, Brian Ameche, were middle-aged and in other relationships when they fell in love and then married in 2007. Ameche had been an architect and played football for Yale. His father, Alan Ameche, won the Heisman Trophy in 1954 when he played for the Baltimore Colts. Ameche succeeded in terminating his life in late January 2020, just weeks before COVID shut everything down.
Amy Bloom is a novelist and short story writer who has been a National Book Award finalist, a National Book Critics Circle Award nominee and a recipient of a National Magazine Award. She's the Shapiro-Silverberg professor of Creative Writing at Wesleyan University. Her new memoir, called "In Love," is centered around her husband's diagnosis and her quest to help him end his life in the manner he chose. The book also keeps flashing back to their life together and how it was changed by Alzheimer's.
Amy Bloom, welcome to FRESH AIR. This is a very moving book, beautifully written. I really love it. Thank you very much for coming.
AMY BLOOM: Thank you for having me.
GROSS: And I hope you're well.
BLOOM: I am. (Laughter) It's a complicated time, but I do feel OK.
GROSS: I am glad to hear that. I want to start with a reading that I think will answer a lot of listeners' questions. And it's about the loop that was in your mind about helping your husband end his life.
BLOOM: Yes. (Reading) 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.
GROSS: When did your husband tell you that he wanted to die? How soon was it after getting the diagnosis of Alzheimer's?
BLOOM: I would say it was probably within three days of getting the diagnosis. Partially, I think, because this is an issue that he had thought about himself earlier in his life. He had strong feelings about people's rights to agency and autonomy. It was part of why he was such a strong supporter of Planned Parenthood, his entire life, as an activist. And also, he, I think, knew himself and knew his own personality and his own style and his own needs.
GROSS: What was your initial response when he told you he wanted to terminate his life? Was your initial response to say, I love you, please don't?
BLOOM: I didn't say I love you, please don't, but I did say, we can do this. I will take care of you. I love you. I will protect you. I will be there for you every inch of the way in this process - the gist of which was, I love you, please don't. And he said, I don't want to argue about this. This is what I need to do. And I know I need to do this, and this is what I want to do. I don't want to leave, he said, but since I'm going to leave you either way, I want to do it this way.
GROSS: Did you think that maybe he wanted to end his life to protect you from the responsibility and the emotional trauma and the expense that would be involved if he continued to live?
BLOOM: I'm sure that that was part of his consideration. But I will also say that Brian was somebody who once said to me, in the pyramid of life, I put myself at the top.
GROSS: Over you.
BLOOM: He did say that. He was pretty forthright.
GROSS: (Laughter) So what stage of Alzheimer's was he in when he was diagnosed? You knew something was wrong by then.
BLOOM: I had certainly noticed things being wrong for the last few years. And I am so sympathetic with all the other people who talk about being sort of blindsided by the diagnosis. I don't feel that I was blindsided. But I understood that something was changing very dramatically, sort of dramatically and subtly. And in some sense, I think if you are not intimate with your - with the person who has Alzheimer's, it might be a little harder to see, especially if they are smart, educated or high IQ people, educated or not, because they have learned so many appropriate responses. And it tends to hide the crumbling structure beneath.
GROSS: He said he wanted to end his life while he was still himself.
GROSS: Did you think of him as still himself, or did you see enough decline that you felt like, this isn't really the man I married?
BLOOM: I felt both. I mean, there were many ways in which he was very much the man I married. At one point, I describe his guiding principles of his life as take yes for an answer, better to ask forgiveness than permission and if there's going to be a fight, throw the first punch. And I think all of those things really came together for him. And those things were always present in him until the very end. But other things that were sort of, in some sense, more superficial - you know, short-term memory, the - by the time we went to Zurich, he could not recall the names of the grandchildren, all of whom he adored and who adored him. But also, you know, he would get lost in the supermarket.
And, of course, we stopped going separately. But I remember the last time he was in the grocery store, which is five minutes from our house and which he had gone to a thousand times, he just couldn't maneuver his way around it. So in those things, it was really clear that the disease was taking its toll. In other ways, in terms of his nature as a determined and largely fearless person, it had not taken that from him.
GROSS: Let's talk about why going to Zurich was your only option. There are states where it's legal to terminate your life under certain circumstances. Why did he not qualify in any of those states?
BLOOM: Nobody with dementia would qualify in any of those states because it is - a terminal disease diagnosis is required, and terminal means that you will be dead within the next six months, period. It doesn't mean you have a terminal disease, you might be dead in a couple of years, you might be dead in a year and a half, six months. You have to find a doctor who will say that you will be dead in six months. There are not that many doctors who are prepared to say this is an absolute fact. And you have to be able to take the medication - the lethal dosage - yourself, which, for somebody with Alzheimer's, might or might not be a problem but, for somebody with some other kind of disease, like ALS, would be a genuine obstacle to overcome.
GROSS: And do you have to prove that you're psychologically in your right mind and knowing what you're doing?
BLOOM: Well, yes, you certainly have to be able to display sort of judgment and cognitive functioning and discernment, which I support entirely. But it is the combination of the timing, the terminal diagnosis and the cognitive function that makes this such a thread-the-eye-of-a-needle process for so many people.
GROSS: And there's no option of saying, I know what I'm doing now. Next year or in two years, I probably won't know what I'm doing, so I'm telling you now that when that time comes, here's how I want to end my life.
BLOOM: That is not a thing in the United States.
GROSS: So what did you have to do to qualify in Zurich? - because that wasn't easy, either.
BLOOM: It was not easy. You become a member of the organization of Dignitas as a sort of a supporting member. There's that first application in which there is no - there's not a big screening process. You sort of say, oh, I would like to support this endeavor, and you become a member. And then you begin the process. They require a biography - an autobiography by the person who's making the application. They require medical records and medical support if you are engaged in the medical process, which, of course, most people who would be applying to Dignitas would have a medical professional, if not several, in their lives.
You again have to sort of demonstrate that you are, as we used to say, of sound mind. And then there are some telephone interviews. And then there is a provisional go ahead or a no-go. And if you get the provisional go ahead, when you go to Zurich, you have two more interviews with physicians to continue to check in with the person making the application. That's the process.
GROSS: One of the things you had to prove is that you weren't pushing your husband to terminate his life because you wanted to inherit his money or just wanted to be done with him. So what kind of evaluation did you have to pass?
BLOOM: I think that evaluation is on their part - I mean, they did not quiz me. They didn't say, show me your bank account or demonstrate to me that Brian, like most architects in America, is not making millions. It's really more implicit, actually, which is that Swiss law says you cannot benefit from somebody else's death and have that be legal. So it's - I don't know exactly how to describe it. But it's really sort of more in the absence of that. However, I think that having interviewed me as well, that seemed quite clear to them.
GROSS: Your husband needed to prove that he wasn't depressed. But wouldn't anybody be depressed if they were losing their memory and knew it was going to keep getting worse and worse until they died? And Alzheimer's also eventually leads to your inability to swallow. So in the long run, if something else doesn't get you first, the Alzheimer's will. So, I mean, it seems natural that you would be depressed. Is that clinical depression? I don't know. But why is that question asked? And how do they make the distinction between expected depression and, like, inappropriate depression for this situation?
BLOOM: Well, I think that's a good question. I think it's - it is good that they ask that question. So you're right. It is the distinction between being appropriately and normally and healthily depressed by the diagnosis, which is, of course, that you have a terminal disease, and a long-standing clinical depression which might have affected your decision making all along and led you to a conclusion that if you had had appropriate medication or talk therapy or a combination, you would not have made that decision. And that's their goal. And this is not just with Alzheimer's patients. This is across the board for them. In other words, they are not looking to facilitate suicide in somebody for whom there would be treatment options and they would no longer wish to end their lives.
GROSS: Let me reintroduce you here. If you're just joining us, my guest is novelist Amy Bloom. Her new memoir, "In Love," is about how she helped her husband, at his insistence, legally terminate his life after his cognitive decline from Alzheimer's. We'll talk more after we take a short break. This is FRESH AIR.
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GROSS: This is FRESH AIR. Let's get back to my interview with novelist Amy Bloom. Her new memoir, "In Love," is about her husband's cognitive decline from Alzheimer's, how it affected their marriage and how she helped him at his insistence end his life on his own terms by going to Zurich, Switzerland, where he could do it legally with medical assistance.
There was a point before you started with applying to Zurich that your husband asked you to help him take his life by giving him some kind of poison or overdose. And you had to decide how to respond. Like, what went through your mind when he asked you to do that? And what options went through your mind?
BLOOM: Well, partially what was so difficult is that I didn't know of any options. It wasn't my impression that this was easily available anywhere. I am sure that if you know someone, you could find yourself with an overdose of something lethal and painless in your medicine cabinet, more people would avail themselves of that. But I couldn't think of anything like that. And also, what Brian was asking at the time was that I be the judge of when it was that he should end his life. And that, I felt, would be very hard for me to do, to be the judge of that.
GROSS: That's a terrible responsibility to have.
BLOOM: It seemed like a big responsibility, and I just - I couldn't quite fathom how I would proceed with that as much as I wanted to help him and support him and as much as I respected and supported his decision.
GROSS: And there was also the prospect of jail. I mean, you know, it's not...
BLOOM: There was.
GROSS: It's not legal to do that.
BLOOM: It is not legal to do that. And that really is one of my (laughter) favorite conversations with Brian 'cause it's so Brian. I said to him, honey, I can't do that. I could go to jail. And he had a long pause, and then he said, you'd be great in jail. You're so resourceful. You're such a leader.
GROSS: (Laughter) Was that a joke?
BLOOM: Well, a little bit.
GROSS: Just a little bit?
BLOOM: Just a little bit.
GROSS: (Laughter) Your husband told you, please write about this.
BLOOM: He did.
GROSS: And so I assume you kept a journal throughout. Did you hide the journal? Because I'm sure you had thoughts in there. I mean, there are thoughts in this book that you probably didn't want your husband to read because it was too upsetting. I mean, you were chronicling his decline and also chronicling your frustrations with him during that decline, especially when you didn't understand what was going on.
BLOOM: I didn't exactly keep a journal. I'm embarrassed to say I have tons of notebooks lying around the way I'd like to think other writers do, but maybe they don't. But I have a mess of them, a nest of them. And sort of whatever was handy, I would make a note. But often I didn't - I wasn't writing at the kitchen table.
But also, I will say he didn't ever ask to see what I was writing about or let me know what you think of this because some of my notes were about Brian and my concerns. But other notes were things like, this is what the doctor said in the appointment, or here's the doctor that we're going to go to for the next appointment, or this is what it was like sitting with him during the MRI. And I certainly would have concealed it if he had been the kind of guy who was like, tell me what you're writing about. But he was not that kind of guy.
GROSS: Because there were so many qualifications your husband had to meet before ending his life with assistance in Zurich with the help of this nonprofit organization that you went to, in some ways he may have been forced to die before he was truly ready because you have to be - you know, you have to be enough of yourself to be able to answer their questions and to convince them that you're, you know, quote, "in your right mind." Do you think if the qualifications were a little more lenient that he would have wanted to live a little bit longer?
BLOOM: I'm sure that there were a number of circumstances which, had they been different, he would have liked to have stayed longer. That's really what he often said. He said, I hate to leave so early. But he also completely understood that there is a window of cognitive functioning and that he had to make this decision and act on it within that window. And that was very clear to him. And I - as I say, I think that speaks to his fundamental principle, which is if there's going to be a fight, throw the first punch.
GROSS: You're not an activist, but would you like to see some of the right-to-life laws change?
BLOOM: Oh, of course, I would like to see that. I think that there - I think that suffering is a part of life, certainly, but I think that there could be ways to make this aspect of life a little easier for people and there could be a little less suffering.
GROSS: Let me reintroduce you here. If you're just joining us, my guest is novelist Amy Bloom. Her new memoir, "In Love," is about how she helped her husband, at his insistence, legally terminate his life after his cognitive decline from Alzheimer's. We'll be right back after we take a short break. I'm Terry Gross, and this is FRESH AIR.
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GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with novelist Amy Bloom. Her new memoir, "In Love," is about how her husband's cognitive decline from Alzheimer's affected their marriage and how she helped him, at his insistence, end his life on his own terms by going to Zurich, Switzerland, where he could do it legally with medical assistance.
During the time you were traveling to Zurich and while you were there waiting for the final end to begin, did you talk a lot about death? Did you talk a lot about your relationship? Were there long, tearful goodbyes? Or did you just try to live moment by moment?
BLOOM: I think most of the tears were on my part. So for me, the whole trip was a long, tearful goodbye. I think, for him, he had made up his mind. He knew what he was going to do. He was focused on what he needed to do and his own process about that, his own process of departure. We held hands a lot. And we took a lot of naps. And we walked around the city together. We didn't talk much about what was coming. And we didn't talk a lot about our life together and how it had brought us to this and what would be next. He did say, you know, I hate to leave so soon. He also said, I am not afraid.
GROSS: The doctors kept telling him, he could change his mind any time. And that would be fine. They'd be happy for him if he decided to live, and that a lot of people do change their mind after actually getting there. And they asked him that, like, many times. Was it reassuring for you that they were giving him an honorable out, but he was certain of what he wanted to do?
BLOOM: It was reassuring to me. I think it was also - I think that was something that met with Brian's approval. He thought it was the right thing for them to ask repeatedly. He actually said that at one point. He said, I appreciate your asking. I will be giving you the same answer every time. I don't know that there are a lot of people who change their mind once they are in Zurich. Although, I'm sure that there are some. And of course, there are many people who apply to the organization as sort of an insurance policy and never follow through.
GROSS: So the procedure for his death involved taking - first taking a drug that prevents nausea, and then waiting a while, and then taking the poison. And, you know, in this case, the drug was sodium pentobarbital, which might ring a bell because it's a drug that's been used in America for executions of people on death row. During that period, when you were waiting for the end after he took the anti-nausea medication, who did you feel you had to be for him at that point? What did he - what did you want him to read on your face? Or did you have no control over that?
BLOOM: Well, I am cursed with a pretty expressive face, which so far I have been unable to overcome. But I knew what he saw on my face because I knew what I felt. And what he saw was love. And we held hands. And we kissed. And he fell into a light sleep and then a deeper sleep. It was a very, very peaceful process.
GROSS: Did you want to make sure he wasn't seeing fear in your face?
BLOOM: I did not want him to see fear in my face. I also didn't feel fear at that moment. I knew that this is what he wanted. And he was at peace with it. And he was glad to be able to accomplish what he had wanted to accomplish - not happy but glad and relieved. And I think what he saw on my face was that I was there for him.
GROSS: At the end, some of the things he was talking about had to do with memories of when he was playing football at Yale. And, I mean, you didn't even know him then. It was, like, decades before you knew him. Did you feel excluded? I'm sorry to ask that. But I was - I just kind of felt for you when I was reading that.
BLOOM: Well, you know, as one does in marriage, sometimes one feels more than one thing. I felt very much that these were such happy memories for him, was such a wonderful period in his life, without any internal conflict. He loved playing football. He was good at football. He had loved his coach. It was a time in his life when he had a lot of support from his dad. All of those things. And so I was happy to see him in some sense, sort of, you know, running in that meadow again, which is very much how it felt.
I would have liked - not at that moment because for me, at that moment, that was what he needed. And that was what gave him joy and comfort. And I was very glad for that. I feel like, you know, there might have been opportunities for more conversations about our life together, maybe, earlier in the four days in Zurich. But I also felt that in some way, that was fairly selfish of me, you know? There he was about to step off into this extraordinary act of self-determination - probably wasn't the time that I needed to focus on, what about me? So I did my best not to.
GROSS: When you were talking to him during his cognitive decline, did you change your tone of voice?
BLOOM: I'm sure I did. And I made a real effort to unchange (ph) my tone of voice because at one point he said to me, you're talking to me like I'm a patient - because prior to being a novelist, I had been a clinical social worker for many years. And I'm not sure that that was the case. But since that's what he experienced, I made a real effort not to speak to him that way.
But it was often a case of conflicting needs, which is that I needed not just for myself, but for whatever was going on in our life at that time, to be clear and to make sure that he understood and that we were on the same page, and we were going to go approach this the same way. And, you know, that kind of emphatic and also, I hope, empathetic approach can be helpful. But there were also times when he didn't care for - as I would say, he didn't care for my tone.
GROSS: Do you think your experiences of having been a clinical social worker earlier in your life were helpful?
BLOOM: I don't think it hurt. I think that being trained to listen, being trained not to finish somebody's sentence for them, being trained to try to hear what the person wished to express and not argue with them about their narrative, but to understand their narrative was useful to me, for sure.
GROSS: Did you have, like, a community of people, a network of people who helped you when your husband was in decline? And how much did you want to tell them? How much - especially early on, how much did you want to acknowledge to other people what was going on?
BLOOM: Well, I didn't want to acknowledge it, and I didn't want to tell people about it. I think my complaints, I'm sure, must have - I mean to my friends must have sounded much more like middle-aged wife complaints. Oh, he's so stubborn. He's not doing this. He's not doing that. He sits in front of the TV. And so I certainly did make those kinds of complaints. But I think I am very, very lucky in having a circle of very close, very supportive friends, people who loved him, people who loved me and the inner circle of my family. I was really, truly fortunate to have the support and love of the people around me.
GROSS: Let's take a short break here, and then we'll talk some more. If you're just joining us, my guest is novelist Amy Bloom. Her new memoir, "In Love," is about how she helped her husband, at his insistence, legally terminate his life after his cognitive decline from Alzheimer's. We'll talk more after we take a short break. This is FRESH AIR.
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GROSS: This is FRESH AIR. Let's get back to my interview with Amy Bloom. Her new memoir, "In Love," is about how her husband's cognitive decline from Alzheimer's affected their marriage and how she helped him, at his insistence, end his own life on his own terms by going to Zurich, Switzerland, where he could do it legally with medical assistance.
You were under so much stress. When your husband was in cognitive decline and then when he decided to terminate his life, you were under stress. You were under emotional distress. Did you ever start feeling like you weren't functioning up to par and start questioning your own memory and your own cognition?
BLOOM: I didn't question my own cognition or my own memory because it seemed pretty strong, but I certainly found myself losing my grip on certain things that I tended to take for granted. I mean, I was in five car accidents in the last two years of Brian's life. I just couldn't keep it together. And fortunately, I don't live in a big city area, and so none of the accidents were life-threatening. And also, happily, I didn't harm anybody in any way. But I did observe, as did the guy at the collision place, that I was there quite a bit.
GROSS: Do you think that's because you were so distracted by your concerns about your husband?
BLOOM: I think I was endlessly distracted. I mean, I - that's what I thought about. I thought about Brian's illness, I thought about his decision. I thought about the obstacles in front of us. I thought about - not even thought, but felt about how important it was that I be there for him. And also, I was lucky enough to find a great therapist who was enormously helpful, as well as being actually quite instructive and a really good model of what a therapist should be.
GROSS: One of the things I really noticed in your memoir is that when you were dealing with doctors, particularly with people who could help you help your husband terminate his life and you had to, you know, to jump over all these hurdles in order to qualify, you tried to be, like, to present, like, the best version of yourself. You know, to not geschrei, which is a Yiddish word for shouting, shouting with, like, very negative connotation, shouting with, like, you're a real pest, you're really annoying. Can you talk about that a little bit, about who you didn't want to be, the presentation you didn't want to make?
BLOOM: Yes. I'd (laughter) - it's very funny, yeah. I mean, geschrei is also, as my mother would have said, to scream like a fish wife on a bad day. And yeah, I thought it would be a good idea to avoid that, (laughter) but in general, I don't find that people are very responsive to that. So I just - I don't know that it was the best version of myself that I wanted to present, it was the most well-modulated, reasonable, thoughtful version of myself that I wanted to present because I wanted people to respond thoughtfully and generously and helpfully. And my human experience is that they are more likely to do that when you are not screaming at them about their incompetence.
GROSS: Did you have people in your family or neighbors or friends who did scream (laughter) and did make a big fuss and did complain to the person about their incompetence? Did you have those kinds of negative role models that you wanted to avoid?
BLOOM: Oh, I think my avoidance was not about neighbors and friends. My avoidance was about my own inner fish wife and, you know, keeping her at bay because I knew it would not be helpful. But I did plenty of quiet screaming in a room by myself. I didn't feel that screaming had to be avoided because I couldn't bear the experience, I just felt the screaming had to be avoided because it wasn't effective.
GROSS: I know you're Jewish. I don't know if you practice or not. But, you know, in the Jewish tradition, there's something called shiva where there's, like, seven days of grieving where you don't do anything. You can't even look at yourself in the mirror. You can't cook. You can't work. And it's understood that family and friends will come and do everything for you while you grieve. And then there's supposed to be, in more conservative and orthodox versions of the religion, a longer period in which you continue the grieving process. And it's a period of being shut off from things. You talked about bringing grieving into life. Did you want to practice any of those Jewish traditions? Or did you want to follow your own instincts about how you should grieve?
BLOOM: I'm sure it is true that, in the end, I followed my own instincts, although I certainly understood what the Jewish rituals were around it. I would say that I succeeded in sitting shiva without sitting shiva, which was certainly the weeks following Brian's death or weeks of quiet times. And you can be damn sure I didn't cook or make much of an effort to be in the world. I just experienced what I experienced.
And also, there are certain traces of Jewish practice. You know, I have a plaque commemorating him and a beautiful tree. And on the anniversary of his death, instead of lighting a candle, which I did the first year, the second year, I brought a cup of tea and put a bunch of chocolates around the plaque and sat with him and talked with him. And I think the image of the stones on a Jewish gravestone were certainly very present and powerful and comforting for me.
GROSS: Did your husband advise you what he wanted to do with his body after death...
GROSS: ...Since he was arranging his own death?
BLOOM: Yes, he did. He had quite a few thoughts about it and directives. And he picked out the poetry for his memorial service. He picked out the music for his memorial service. It was probably just an oversight that he didn't pick out the food for his memorial service. And although I think he had a lot of ideas about where he wanted his body to be buried in the end, he had a couple of very strong preferences, and that is what we did.
GROSS: What was the music he wanted played?
BLOOM: Bill Evans - big Bill Evans fan as we both - as I am, as he was.
GROSS: I'm very grateful to you, and I wish you good health and all good things.
BLOOM: Thank you so much. And the same to you, Terry. I really appreciate this.
GROSS: Amy Bloom is the author of the new book "In Love: A Memoir Of Love And Loss."
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GROSS: Coming up after we take a short break, Ken Tucker will review a new album by bluegrass musician and bandleader Del McCoury of songs that songwriters sent him demos of years ago. This is FRESH AIR.
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