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Speaker 1: He said to me, I have seen the Alzheimer's long goodbye close up. We had a very close family friend who went through it for a number of years. He said, that is not for me. I would rather die on my feet than live on my knees. And you're going to help me because you love me, And he was right. In the writer, Amy Bloom traveled to Switzerland to help her husband Brian die with dignity. Brian wanted to face death on his own terms before he was plunged into the long suffering of living with a dementing disease. Amy writes beautifully about their latent life romance and how she helped Brian to end his life in her gorgeous memoir in Love. This story hits close to home for any of us who have ever watched a loved one suffer and felt helpless to alleviate their pain. My own dad was bedridden with muscular dystrophy for eight years before he finally passed in and I know that if I could have, I would have done anything to help him do what he wanted to do to have a more dignified death. That's exactly what Amy did manage to do. It is completely physically painless. It is very peaceful. The atmosphere is very tranquil and supportive. Aside from the fact that you have to fly thousands of miles away from home, it is quite comfortable and do you feel safe? And I don't think that one could ask for more in that sense. I'm Joe Piazza and this is committed. Amy and Brian were in their fifties when they met in a small town where they both lived in two thousand and five. There were a lot of Northern Europeans and old Yankees and we were neither one. And he was active in conservation and public space, and I was active with the library, and our past kept crossing, and eventually, you know, something sparked and clicked and we fell in love. And sometimes people act on that in middle age, and sometimes they don't, but we did. I think you know when you are old enough, you know when you know. On the other hand, when you were old enough, you don't always leap. The two of them had lived very full lives. They've had other partners and children and careers. They knew who they were and what they wanted out of life. I think often when you're younger, there's a lot of fantasizing about who the other person is and how they will love you and how they will make you feel. Oh, which is great but entirely dependent on another person, as opposed to knowing who you are and the ways in which you can be a good partner or the ways in which you are still a work in progress. They got married in two thousand seven, and for the next ten years they lived a great life, filled with job that they loved, delicious food and playing with their grandkids. And you know, we traveled a little bit and worked hard and made dinner and watched Peaky Blinders, and you know, puttered in the garden and took walks and do the kinds of things that middle aged people do if they're lucky. H And when did you, guys, when did you find out about his Alzheimer's diagnosis. Well, the diagnosis came in ten, but I would say his symptoms began in twenty six. Okay, what were the early symptoms. The early symptoms was sort of a marked loss of short term memory. He began to struggle with directions and how to get to someplace that he had been before. He was having some difficulty at work that seemed to be. He was an architect entirely about sort of office protocol and abbits like using the printer, rather than about design, and that got to a point that was so difficult that he retired early. And that was certainly a very strong indicator. One of the things that is often the most difficult for partners with dementing diseases is finally getting that diagnosis, even though the diagnosis doesn't change much since there's no treatment. It was hard for Amy, and of course it was hard for Brian, because Brian knew as soon as he officially got that diagnosis that he didn't want to let this go on forever. We spent a long weekend crying and doing very little else, and then Brian made it clear that he had given this a lot of thought. He had also thought about these issues beforehand, only because he was somebody who was very interested in right to life and right to die and general sort of issue is of human agency and autonomy. And he said to me, I have seen the Alzheimer's long goodbye close up. We had a very close family friend who went through it for a number of years. He said, that is not for me. I would rather die on my feet than live on my knees and you're going to help me because you love me, And he was right. What was your first reaction to that? Though? My first reaction was to cry some more and tell him that if he thought at all that he did not want to end his life earlier than when Alzheimer's would take him, which would be quite a long time, I would take care of him. I would protect him, I would look after him. And he was very very clear he wasn't that adamant, and that never changed. That never changed for a second. And so he was adamant. But and you said, yes, I love you. I will do what you need me to do. I did. Time for a quick break. We live in a country that often values life at any and all costs over a good, peaceful, and dignified death. Brian wanted to end his life on his own terms before the real suffering said in not just for him, but for his entire family. He had no way to do that here in this country. He had no way to avoid what he called the law goodbye. It was impossible to do here. There is there is no option in the United States for somebody with a dementing disease period that's that's the end of that story. If you can demonstrate with the physician's help that you have no more than six months to live, and you can get the doctors to verify that you have no more than six months to live, which is a pretty narrow window, then you can apply in those nine states. And by apply, I mean usually have two in person interviews and one written statement that you would like to end your life while you have the capacity to do that, and if you have the capacity to do that, and you can make arrangements. Having become a resident of that new state and found doctors who will help you in that new state, it seemed to me to be an impossible window for us to get through. And also because Alzheimer's, although terminal, is not terminal you know, in the next few months after a diagnosis, it's terminal. Over the course of five, six, seven, eight years, Since ending his life would be impossible in the United States, Amy started looking abroad. I did a lot of reading. I asked as many useful questions of Google that I could come up with, and eventually that directed me towards Dignitas, whose motto is life with dignity, Death with dignity. And that seemed promising. In contrast with the United States, Dignitas in Switzerland does not make you jump through dozens of hopes. There's not a lot that is required. You apply first for membership, which is just to support the organization, which is a nonprofit organization. And then if you make the application to go through the process, there's a gathering of medical records, and Brian was required required to write an autobiographical statement, and you know, this is quite a bit of gathering of records. And then at some point you begin to have some telephone intervi use and then you receive a provisional green light, at which point you begin to make plans to go to Zurich, at which point there will be two separate interviews to check on your state of mind and your decision making capacity, and also to offer you the opportunity repeatedly to change your mind. And Brian didn't waver at any point, right, No, he knew exactly what he wanted. I mean this is also pabably characteristic of him as a human being. You write about that a lot that he just he like, he made very clear, cound decisions. He always sew what he wanted. He was a hard man to stop and largely fearless. So you make the plans and you go over there. What what was his condition like in his state of mind as you're going into this. How badly had the disease progressed at this point? Well, it was certainly problematic for him, and you know, his independent life. He got lost in the grocery store one time. He was having some trouble with the names of all the grandchildren. But his state of being as the person that he was and his capacity to make decisions had not altered. I mean, for example, he got lost in the grocery store, he made a decision, he put his grocery cart to one side, and he drove home and said to me, I got lost in the grocery store. I left the cart there, So that was an accurate description of what had happened. And I said, well, what should we do next, which I think is probably not normally what people say to somebody with Alzheimer's. And he said, well, let's let's forget about the groceries. But it turns out I also left my key, my house keys there, so let's go back and get that. So we went back and got that. So you know, he was still very much Brian, but there was certainly a lot of fraying of sort of his cognitive abilities. But he was still him. He was still the person that you fell in love with, this dey in terms of his judgment and his discernment. Absolutely what did he want a good death to look like? And I think that's something that we don't talk about nearly enough in our culture, like what should a good death look like? I think that depends entirely on the person experiencing it. For him, he wanted it to be peaceful and painless, and he wanted me by his side. Amy and Brian went shopping for stationary to write goodbye notes. They found some with snoopy on it for Brian to write to the grandkids who had nicknamed him Babu wrote notes to everybody else in the extended family. And we had a lot of visits from the extended family during the last two months of his life, you know, lots of dinners, lots of get togethers, lots of business, lots of walks. From January, Amy and Brian flew to Zurich. They treated themselves to business class, had a glass of champagne and made a toast. When they landed in Zurich, they traveled to a small and comfortable apartment that Dignatos keeps for patients. Brian lay down, Amy held his hand. It is completely physically painless. It is very peaceful. The atmosphere is very tranquil and supportive. Aside from the fact that you have to fly thousands of miles away from home, it is quite comfortable. And do you feel safe? And I don't think the one could ask for more in that sense. Amy writes in her book that she wrapped her arms around him and kissed his forehead like he was a baby, her brave boy gone on a long journey. Thankfully, Amy wasn't alone that day. A friend of Amy's had flown to Zurich so that Amy would have some to travel back with her to the United States. As a kind of friend you want to be and the kind of friend you want to have, absolutely feel it just feels like such the definition of friendship. And so what was what was that plane ride like for the two of you? What did you did you talk about? Brian? We mostly held hands and cried. That feels like the threat with that feels like what I would do it feels, but still I want that person there. I want that person to hold my hand and cry with me. Her job, as I understood it, was not so much to cry with me on the way back, although that is a percent what we did. But her job is really to make sure I didn't miss the plane. I don't think I was, you know, functioning at my peak, and I thought I could use all the help I could get. Time for a quick break m When Amy got home from Zurich, she thought she might just retreat into herself, carl into or bad, shut out the world, but instead she got to work. See, when Brian made his decision to end his life, he asked two things of his wife. He asked her to help him figure out how to do it, and he also asked her to write about it. Well, Brian wasn't telling me to write it because he knew that's how I processed things. He was telling me to write it because he thought it was important and that people should be encouraged to have conversations that had some meaning and content about the end of their lives. And he thought that my writing about it and publishing about it might be helpful. I was making notes as we were going along, because if you are taking care of somebody with a chronic or acute or fatal illness, you've got a lot of doctor's appointments, You've got a lot of medication, you've got a lot of supplements, you've got a lot of things that you have to a lot of boxes you have to tick off. So I was making notes all the time. They were not necessarily they were not at all for the purposes of writing a book. They were just to keep track of what was happening in our life. Afterwards, I began to organize my writing a little bit more and began to look at events and write more about them in a more storagelling way. Did you feel close to him while you were writing it? Oh? Yeah, it turns out you can type and cry at the same time. So I felt very close to him. And I think he would have been very pleased. His mother tells me that he would be very pleased, and his best friend tells me that he would be very pleased with the book and the reception to the book, And I'm delighted to hear it. And do you think that you've been You've been able to start these kinds of conversations about what a dignified and a good God looks like. Well, I hope so. The emails that I get from strangers indicate to me that this is a topic of enormous interest to people, and that far more people grapple with this than I would have thought when the number of emails I've gotten from people saying my wife had to go to Dignitas by herself. She had a ls but we had small children and I had to take care of them. Things like that, that they're just extraordinary letters of great pain and great suffering and an enormous wish that things should be different for people, and also a real conviction that it's important that people talk about the end of life. Yeah, I don't. I think that it is just such a tremendous act of love to be with someone and give them the kind of death that they that they want. That's one of your lines that really got me was grief is the price that you pay for love alas, Yeah, I think so. And that's not just true if somebody has a terminal illness. No, no, it's true. It's true across the board. I really want to share this book with as many people as possible because I think it is something that all of us need to be talking about more. And beyond that, it's also a beautiful love story and I think that we could we can use a lot more of those right now. So thank you so much for writing it. It felt important to me and it was important to him. So I'm glad that we were able to do it, and I'm glad I was able to write about it. And it really touches me this so many people seem to respond to it. This episode was hosted reported by Joe Piazza, Very special thanks to Amy Bloom. Committed as produced by Ramsey Event. The executive producers are Joe Piazza and Tyler Klang. Theme song by Tristan McNeil. For comments, suggestions, or to be part of the show, give us a call at four zero four that's four zero four seven three or send us an email at Joe at Committed podcast dot com. That's j O at Committed podcast dot com. Committed as a production of iHeart Radio and produced in our studios located in Atlanta, Georgia. For more podcasts for my Heart Radio, visit the iHeart Radio app, Apple Podcasts, or wherever you listen to your favorite shows.
Speaker 1: He said to me, I have seen the Alzheimer's long goodbye close up. We had a very close family friend who went through it for a number of years. He said, that is not for me. I would rather die on my feet than live on my knees. And you're going to help me because you love me, And he was right. In the writer, Amy Bloom traveled to Switzerland to help her husband Brian die with dignity. Brian wanted to face death on his own terms before he was plunged into the long suffering of living with a dementing disease. Amy writes beautifully about their latent life romance and how she helped Brian to end his life in her gorgeous memoir in Love. This story hits close to home for any of us who have ever watched a loved one suffer and felt helpless to alleviate their pain. My own dad was bedridden with muscular dystrophy for eight years before he finally passed in and I know that if I could have, I would have done anything to help him do what he wanted to do to have a more dignified death. That's exactly what Amy did manage to do. It is completely physically painless. It is very peaceful. The atmosphere is very tranquil and supportive. Aside from the fact that you have to fly thousands of miles away from home, it is quite comfortable and do you feel safe? And I don't think that one could ask for more in that sense. I'm Joe Piazza and this is committed. Amy and Brian were in their fifties when they met in a small town where they both lived in two thousand and five. There were a lot of Northern Europeans and old Yankees and we were neither one. And he was active in conservation and public space, and I was active with the library, and our past kept crossing, and eventually, you know, something sparked and clicked and we fell in love. And sometimes people act on that in middle age, and sometimes they don't, but we did. I think you know when you are old enough, you know when you know. On the other hand, when you were old enough, you don't always leap. The two of them had lived very full lives. They've had other partners and children and careers. They knew who they were and what they wanted out of life. I think often when you're younger, there's a lot of fantasizing about who the other person is and how they will love you and how they will make you feel. Oh, which is great but entirely dependent on another person, as opposed to knowing who you are and the ways in which you can be a good partner or the ways in which you are still a work in progress. They got married in two thousand seven, and for the next ten years they lived a great life, filled with job that they loved, delicious food and playing with their grandkids. And you know, we traveled a little bit and worked hard and made dinner and watched Peaky Blinders, and you know, puttered in the garden and took walks and do the kinds of things that middle aged people do if they're lucky. H And when did you, guys, when did you find out about his Alzheimer's diagnosis. Well, the diagnosis came in ten, but I would say his symptoms began in twenty six. Okay, what were the early symptoms. The early symptoms was sort of a marked loss of short term memory. He began to struggle with directions and how to get to someplace that he had been before. He was having some difficulty at work that seemed to be. He was an architect entirely about sort of office protocol and abbits like using the printer, rather than about design, and that got to a point that was so difficult that he retired early. And that was certainly a very strong indicator. One of the things that is often the most difficult for partners with dementing diseases is finally getting that diagnosis, even though the diagnosis doesn't change much since there's no treatment. It was hard for Amy, and of course it was hard for Brian, because Brian knew as soon as he officially got that diagnosis that he didn't want to let this go on forever. We spent a long weekend crying and doing very little else, and then Brian made it clear that he had given this a lot of thought. He had also thought about these issues beforehand, only because he was somebody who was very interested in right to life and right to die and general sort of issue is of human agency and autonomy. And he said to me, I have seen the Alzheimer's long goodbye close up. We had a very close family friend who went through it for a number of years. He said, that is not for me. I would rather die on my feet than live on my knees and you're going to help me because you love me, And he was right. What was your first reaction to that? Though? My first reaction was to cry some more and tell him that if he thought at all that he did not want to end his life earlier than when Alzheimer's would take him, which would be quite a long time, I would take care of him. I would protect him, I would look after him. And he was very very clear he wasn't that adamant, and that never changed. That never changed for a second. And so he was adamant. But and you said, yes, I love you. I will do what you need me to do. I did. Time for a quick break. We live in a country that often values life at any and all costs over a good, peaceful, and dignified death. Brian wanted to end his life on his own terms before the real suffering said in not just for him, but for his entire family. He had no way to do that here in this country. He had no way to avoid what he called the law goodbye. It was impossible to do here. There is there is no option in the United States for somebody with a dementing disease period that's that's the end of that story. If you can demonstrate with the physician's help that you have no more than six months to live, and you can get the doctors to verify that you have no more than six months to live, which is a pretty narrow window, then you can apply in those nine states. And by apply, I mean usually have two in person interviews and one written statement that you would like to end your life while you have the capacity to do that, and if you have the capacity to do that, and you can make arrangements. Having become a resident of that new state and found doctors who will help you in that new state, it seemed to me to be an impossible window for us to get through. And also because Alzheimer's, although terminal, is not terminal you know, in the next few months after a diagnosis, it's terminal. Over the course of five, six, seven, eight years, Since ending his life would be impossible in the United States, Amy started looking abroad. I did a lot of reading. I asked as many useful questions of Google that I could come up with, and eventually that directed me towards Dignitas, whose motto is life with dignity, Death with dignity. And that seemed promising. In contrast with the United States, Dignitas in Switzerland does not make you jump through dozens of hopes. There's not a lot that is required. You apply first for membership, which is just to support the organization, which is a nonprofit organization. And then if you make the application to go through the process, there's a gathering of medical records, and Brian was required required to write an autobiographical statement, and you know, this is quite a bit of gathering of records. And then at some point you begin to have some telephone intervi use and then you receive a provisional green light, at which point you begin to make plans to go to Zurich, at which point there will be two separate interviews to check on your state of mind and your decision making capacity, and also to offer you the opportunity repeatedly to change your mind. And Brian didn't waver at any point, right, No, he knew exactly what he wanted. I mean this is also pabably characteristic of him as a human being. You write about that a lot that he just he like, he made very clear, cound decisions. He always sew what he wanted. He was a hard man to stop and largely fearless. So you make the plans and you go over there. What what was his condition like in his state of mind as you're going into this. How badly had the disease progressed at this point? Well, it was certainly problematic for him, and you know, his independent life. He got lost in the grocery store one time. He was having some trouble with the names of all the grandchildren. But his state of being as the person that he was and his capacity to make decisions had not altered. I mean, for example, he got lost in the grocery store, he made a decision, he put his grocery cart to one side, and he drove home and said to me, I got lost in the grocery store. I left the cart there, So that was an accurate description of what had happened. And I said, well, what should we do next, which I think is probably not normally what people say to somebody with Alzheimer's. And he said, well, let's let's forget about the groceries. But it turns out I also left my key, my house keys there, so let's go back and get that. So we went back and got that. So you know, he was still very much Brian, but there was certainly a lot of fraying of sort of his cognitive abilities. But he was still him. He was still the person that you fell in love with, this dey in terms of his judgment and his discernment. Absolutely what did he want a good death to look like? And I think that's something that we don't talk about nearly enough in our culture, like what should a good death look like? I think that depends entirely on the person experiencing it. For him, he wanted it to be peaceful and painless, and he wanted me by his side. Amy and Brian went shopping for stationary to write goodbye notes. They found some with snoopy on it for Brian to write to the grandkids who had nicknamed him Babu wrote notes to everybody else in the extended family. And we had a lot of visits from the extended family during the last two months of his life, you know, lots of dinners, lots of get togethers, lots of business, lots of walks. From January, Amy and Brian flew to Zurich. They treated themselves to business class, had a glass of champagne and made a toast. When they landed in Zurich, they traveled to a small and comfortable apartment that Dignatos keeps for patients. Brian lay down, Amy held his hand. It is completely physically painless. It is very peaceful. The atmosphere is very tranquil and supportive. Aside from the fact that you have to fly thousands of miles away from home, it is quite comfortable. And do you feel safe? And I don't think the one could ask for more in that sense. Amy writes in her book that she wrapped her arms around him and kissed his forehead like he was a baby, her brave boy gone on a long journey. Thankfully, Amy wasn't alone that day. A friend of Amy's had flown to Zurich so that Amy would have some to travel back with her to the United States. As a kind of friend you want to be and the kind of friend you want to have, absolutely feel it just feels like such the definition of friendship. And so what was what was that plane ride like for the two of you? What did you did you talk about? Brian? We mostly held hands and cried. That feels like the threat with that feels like what I would do it feels, but still I want that person there. I want that person to hold my hand and cry with me. Her job, as I understood it, was not so much to cry with me on the way back, although that is a percent what we did. But her job is really to make sure I didn't miss the plane. I don't think I was, you know, functioning at my peak, and I thought I could use all the help I could get. Time for a quick break m When Amy got home from Zurich, she thought she might just retreat into herself, carl into or bad, shut out the world, but instead she got to work. See, when Brian made his decision to end his life, he asked two things of his wife. He asked her to help him figure out how to do it, and he also asked her to write about it. Well, Brian wasn't telling me to write it because he knew that's how I processed things. He was telling me to write it because he thought it was important and that people should be encouraged to have conversations that had some meaning and content about the end of their lives. And he thought that my writing about it and publishing about it might be helpful. I was making notes as we were going along, because if you are taking care of somebody with a chronic or acute or fatal illness, you've got a lot of doctor's appointments, You've got a lot of medication, you've got a lot of supplements, you've got a lot of things that you have to a lot of boxes you have to tick off. So I was making notes all the time. They were not necessarily they were not at all for the purposes of writing a book. They were just to keep track of what was happening in our life. Afterwards, I began to organize my writing a little bit more and began to look at events and write more about them in a more storagelling way. Did you feel close to him while you were writing it? Oh? Yeah, it turns out you can type and cry at the same time. So I felt very close to him. And I think he would have been very pleased. His mother tells me that he would be very pleased, and his best friend tells me that he would be very pleased with the book and the reception to the book, And I'm delighted to hear it. And do you think that you've been You've been able to start these kinds of conversations about what a dignified and a good God looks like. Well, I hope so. The emails that I get from strangers indicate to me that this is a topic of enormous interest to people, and that far more people grapple with this than I would have thought when the number of emails I've gotten from people saying my wife had to go to Dignitas by herself. She had a ls but we had small children and I had to take care of them. Things like that, that they're just extraordinary letters of great pain and great suffering and an enormous wish that things should be different for people, and also a real conviction that it's important that people talk about the end of life. Yeah, I don't. I think that it is just such a tremendous act of love to be with someone and give them the kind of death that they that they want. That's one of your lines that really got me was grief is the price that you pay for love alas, Yeah, I think so. And that's not just true if somebody has a terminal illness. No, no, it's true. It's true across the board. I really want to share this book with as many people as possible because I think it is something that all of us need to be talking about more. And beyond that, it's also a beautiful love story and I think that we could we can use a lot more of those right now. So thank you so much for writing it. It felt important to me and it was important to him. So I'm glad that we were able to do it, and I'm glad I was able to write about it. And it really touches me this so many people seem to respond to it. This episode was hosted reported by Joe Piazza, Very special thanks to Amy Bloom. Committed as produced by Ramsey Event. The executive producers are Joe Piazza and Tyler Klang. Theme song by Tristan McNeil. For comments, suggestions, or to be part of the show, give us a call at four zero four that's four zero four seven three or send us an email at Joe at Committed podcast dot com. That's j O at Committed podcast dot com. Committed as a production of iHeart Radio and produced in our studios located in Atlanta, Georgia. For more podcasts for my Heart Radio, visit the iHeart Radio app, Apple Podcasts, or wherever you listen to your favorite shows.
