herbalmoon's review
I'm still reading, so I don't have a grasp on what I want to write about the overarching story. But let me say this about the subject matter:
Some of the other reviewers have described this book as forwarding the author's "sick and twisted agenda". If you think a woman not stopping her husband from seeking out care in order to end his life when he has a terminal illness is "sick", then you must live in a plush little bubble and the world has never hurt you.
I've lost three family members to Alzheimer's (or something like it). The first two (both grandfathers, in fact) had dementia due to a stroke; and while I wasn't there for my paternal grandfather's last few years, I can tell you my maternal grandfather basically died two years before the rest of his body. Sure, he was lucid at times, but since he was legally blind, he was basically bumbling around in the world while trapped in his own mind, waiting for that next stroke (or two, actually) to take him down.
Do you know what happens to an end-stage Alzheimer's patient, as Brian would've been if he hadn't ended his life? They can no longer care for themselves and have to be watched around the clock, often in a facility. At any time during this six month period (estimated), the patient could die from a passing illness (such as pneumonia), choke to death or simply stop eating, as my aunt did. (Unfortunately, I no longer have the link to the UK hospice page that gave me this information in 2018, but the information is out there.)
When you can tell me what's "loving" about allowing someone to be trapped in their own body while waiting to become target practice for a blood clot; when you can tell me what's "compassionate" about the illness/choking/starvation roulette, I might believe your claims that allowing someone to commit suicide is "worse" than letting them live.
=Later=
I had to give up...this played too tightly on my heartstrings.
And the "wonderful person" who said that the author was a narcissist wrote me back and said she could've divorced him. Hmm...if she loved herself so much more than him, why didn't she divorce him? Oh, wait...maybe because that person is full of shit and the author loved her husband?!
Some of the other reviewers have described this book as forwarding the author's "sick and twisted agenda". If you think a woman not stopping her husband from seeking out care in order to end his life when he has a terminal illness is "sick", then you must live in a plush little bubble and the world has never hurt you.
I've lost three family members to Alzheimer's (or something like it). The first two (both grandfathers, in fact) had dementia due to a stroke; and while I wasn't there for my paternal grandfather's last few years, I can tell you my maternal grandfather basically died two years before the rest of his body. Sure, he was lucid at times, but since he was legally blind, he was basically bumbling around in the world while trapped in his own mind, waiting for that next stroke (or two, actually) to take him down.
Do you know what happens to an end-stage Alzheimer's patient, as Brian would've been if he hadn't ended his life? They can no longer care for themselves and have to be watched around the clock, often in a facility. At any time during this six month period (estimated), the patient could die from a passing illness (such as pneumonia), choke to death or simply stop eating, as my aunt did. (Unfortunately, I no longer have the link to the UK hospice page that gave me this information in 2018, but the information is out there.)
When you can tell me what's "loving" about allowing someone to be trapped in their own body while waiting to become target practice for a blood clot; when you can tell me what's "compassionate" about the illness/choking/starvation roulette, I might believe your claims that allowing someone to commit suicide is "worse" than letting them live.
=Later=
I had to give up...this played too tightly on my heartstrings.
And the "wonderful person" who said that the author was a narcissist wrote me back and said she could've divorced him. Hmm...if she loved herself so much more than him, why didn't she divorce him? Oh, wait...maybe because that person is full of shit and the author loved her husband?!
jchel's review
4.0
We lean closer to each other and then we pull back, each of us fussing with our shoes and carry-ons, each of us opening our little gift bags from the airline and pulling out the socks (yes) and the eye masks (never) and the tiny toothpastes and tiny toothbrushes, which we persist in believing will delight the grandchildren, which they never do.
6
I feel shifty and out of place at the hotel’s front desk. Brian wanders around, in and out of the lobby, and when I see him walk through a pair of swinging doors at the end of the hall while I am searching for our passports, my stomach hurts, as it does every time he leaves my sight. When he comes back a few minutes later, I’ve pulled myself together. Every time the concierge asks me a question, I fumble like a suspect. Why are we here? Would we like a map of all the stores on Bahnhofstrasse (Gucci, Fendi, Hublot, Cartier)? May they show me the bar and the library? I want to say to Brian that it reminds me a little of a hotel we loved in Amsterdam, but I am afraid that he won’t remember the trip, the hotel. I am afraid that he won’t but he will pretend that he does and I won’t know if he does or he doesn’t, which is awful, or I will know he doesn’t, which is also awful, and I don’t say anything, which is usually the choice I make now. We are both exhausted by the time we get to our room.
18
By December, when S. told us that we could go forward with the process, that we could come to Zurich in January, the real thing was upon us, the world without Brian in it, the world going on without him, me alone and him in the earth or in the stars but not next to me.
25
They will all miss him terribly and I’m pretty sure that none of them have perceived any malfunction in him. Yet I know that if we were not going to Dignitas now, soon they would be sad and relieved for his life to come to its end, and this way they are just heartbroken. It matters to Brian and to me that they will remember him as their loving, fun, goofy, candy-sharing, soft-touch Babu. I figure that when each of them gets to be old enough, if they want to, they will read this book and his lovely little notes written to each of them, all of which begin: I wish I could stay longer. And when they are teenagers, they may be angry that we lied to them, and that will be okay. This is the best we can do.
44-45
Brian and I were always stickily close; we liked to grocery shop together. We liked to go to the fish market and the bakery and the dry cleaner’s together. He was as familiar with my shoes and shopping preferences as my sister was. I had even driven with him across New England to visit fancy fly-fishing stores.
67
I tell him I’m going to weed and smooth out the gravel we do have. He tells me that we need more stone. I tell him that I agree but that we can’t afford it. I tell him that I’ll take care of it. He tells me we need more stone. I’m sure the look on my face is not a pleasant one. He says, Do you want me to do it? I say no, although I mean yes. I mean, Yes, if you could do it the way you would have a couple of years ago, measuring the number of cubic yards needed and discussing the size of the gravel until I want to scream—yes, that would be great. But not now. Now it would not be great and I would either be trying very hard to discreetly micromanage the entire time or else end up doing it myself, so, no. I go to my office to eat a scone and read a mystery and hope that I will clear my head and do some actual work.
81
Our whole weekend is crying and talking and binge-watching TV at night. We’re not people with conventional moral compasses, but we don’t let ourselves binge-watch during the day.
109
I couldn’t understand why I cried nonstop during these phone calls. I was sure that Brian had Alzheimer’s before the MRI; I’d thought, It’s not a surprise. But it was a surprise the way every bad thing, even as you see the flames in the distance, even as the terrible thing is upon you, breathing in your ear, hammering on your narrow bones, is still a surprise.
151
The good days still have sweetness. If I can’t fall asleep quickly, I ask Brian if I can spoon him and he lies on his right side and I spoon him and sometimes, like the old days (three years ago), I slide my hand under his T-shirt and take in his amazingly smooth skin and his smell, which hasn’t changed: wood and cinnamon. I lie on his shoulder and we watch an incomprehensible Scottish mystery. I fall asleep during a crucial ten minutes and when I wake up Brian tells me why the rocking chair or convertible or chicken coop is covered in blood. We eat a couple of cookies in bed and I point out that there’s been a change (not a bad thing but still…) in Rachel Maddow’s lip gloss and he admires my keen eye and we brush the cookie crumbs onto the floor because no one is watching. I plump my pillow so vigorously, it knocks everything off my nightstand, and he laughs and says that I’m a danger to myself and others. Those moments are all I want. I want a life of this. He sighs and I sigh.
161-162
The only sign of reluctance on Brian’s part is what he warned me about—his making conversation before taking the sodium pentobarbital. He’d said to me that he thought he might be inclined to “just bullshit around for a while” when the time came to take it. “I know I have to go,” he said. “I know I’m going. I’m ready. I’m just not going to hurry.”
He doesn’t hurry. He drinks the anti-emetic and gets comfortable on the couch. I sit next to him, holding his hand, but I have to let it go because he’s gesturing while storytelling. The stories are all about football at Yale and his coach, Carm Cozza, and I could tell them with him: Brian and a friend winding up in jail because of a young, dumb fight in front of the Anchor Bar, and Carm Cozza, stern and forgiving, bailing them out; Brian talking about quitting football because he didn’t get to play enough his first season and Carm telling him that he, Carm, would let Brian play when Brian was good enough and not before and Brian resolving to be good enough; Brian’s father and Carm Cozza playing handball together one time, his two fathers.
I cannot manage to look interested in these stories, because I’m not (Brian says nothing about his life, about our life, about our love, about the children and grandchildren, nothing about the beautiful public housing he designed and cared about so deeply or the work he did for conservation and open spaces or even, and you know I must be reaching here, about fishing), but I do try not to look like I’m in agony, which I am.
The Ladies wait in the back room (a kitchen, I think), and after about forty-five minutes they come out again. They tell us that the anti-emetic has now worn off and if Brian wishes to continue (I do, he says), he will have to take it again. They say, You can take your time, and I roll my eyes because of course he will, he always does, I think, as if we are in some other room, on some other occasion, and then I remember where I am and I’m ashamed of myself. Brian smiles slightly. “What time’s your plane?” he says, and I have never felt so bad about being me in my entire life.
He takes the anti-emetic again and the Ladies put an airplane pillow around his neck. Brian falls silent and now I long for the football stories. I take both of his hands and he lets me. IloveyouIloveyouIloveyou, I say. I love you so much. I love you, too, he says, and he drinks the sodium pentobarbital. I kiss him, all over his handsome, weary face, and he lets me.
It is impossible to think about the next twenty minutes. I keep my eyes and hands on him, as if I’ll forget what it is like to breathe next to him or feel his presence. (I don’t, not for a minute. I hear his breathing when I go to sleep and I feel his body heat when I wake up.) He falls asleep holding my hand and his head falls back a little on the neck pillow (whose purpose I now understand). His breathing changes and it’s the last time I will hear him sleeping, breathing deeply and steadily, the way he has done lying beside me for almost fifteen years. I hold his hand. I can still feel its weight and warmth. His skin color changes, from ruddy to paler pink. I sit there and sit there, as if some other thing will now happen. He is quite pale and I see that he is gone from this world.
I sit, holding his hand, for a long time. I get up and wrap my arms around him and kiss his forehead, as if he is my baby, at last gone to sleep, as if he is my brave boy going on a long journey, miles and miles of Nought.
198-200
John Paul speaks at length about Brian and their happy arguments and political discussions and at length about fishing, and even as part of me thinks, That’s a lot too much about fishing, really—the other part of me feels that my husband and his long, boring stories about fishing have been beautifully brought to life, and I am so grateful.
215
Our minister speaks wisely and warmly and I am delighted, but I barely listen.
Brian takes my hands and I cannot see anything except his face. He says, I prepared some…and then he squeezes my hands tightly and he begins to cry.
“I love you so much,” he says. “That’s all I can say. I love you so, so much and I will love you every day of my life.”
Then he says, quietly, Your turn.
I say, Middle-aged women are supposed to look for the safe harbor, for the port in the storm of life. We are supposed to look for the calm and the comfortable. You are the port in the storm. And you are the storm. And you are the sea. You are the rocks and the beach and the waves. You are the sunrise and the sunset and all of the light in between.
I think I have more to say but I can’t. We are holding hands, pressed against each other, holding each other up.
I whisper to him, Every day of my life, and he whispers to me, Every day of my life.
221-222
6
I feel shifty and out of place at the hotel’s front desk. Brian wanders around, in and out of the lobby, and when I see him walk through a pair of swinging doors at the end of the hall while I am searching for our passports, my stomach hurts, as it does every time he leaves my sight. When he comes back a few minutes later, I’ve pulled myself together. Every time the concierge asks me a question, I fumble like a suspect. Why are we here? Would we like a map of all the stores on Bahnhofstrasse (Gucci, Fendi, Hublot, Cartier)? May they show me the bar and the library? I want to say to Brian that it reminds me a little of a hotel we loved in Amsterdam, but I am afraid that he won’t remember the trip, the hotel. I am afraid that he won’t but he will pretend that he does and I won’t know if he does or he doesn’t, which is awful, or I will know he doesn’t, which is also awful, and I don’t say anything, which is usually the choice I make now. We are both exhausted by the time we get to our room.
18
By December, when S. told us that we could go forward with the process, that we could come to Zurich in January, the real thing was upon us, the world without Brian in it, the world going on without him, me alone and him in the earth or in the stars but not next to me.
25
They will all miss him terribly and I’m pretty sure that none of them have perceived any malfunction in him. Yet I know that if we were not going to Dignitas now, soon they would be sad and relieved for his life to come to its end, and this way they are just heartbroken. It matters to Brian and to me that they will remember him as their loving, fun, goofy, candy-sharing, soft-touch Babu. I figure that when each of them gets to be old enough, if they want to, they will read this book and his lovely little notes written to each of them, all of which begin: I wish I could stay longer. And when they are teenagers, they may be angry that we lied to them, and that will be okay. This is the best we can do.
44-45
Brian and I were always stickily close; we liked to grocery shop together. We liked to go to the fish market and the bakery and the dry cleaner’s together. He was as familiar with my shoes and shopping preferences as my sister was. I had even driven with him across New England to visit fancy fly-fishing stores.
67
I tell him I’m going to weed and smooth out the gravel we do have. He tells me that we need more stone. I tell him that I agree but that we can’t afford it. I tell him that I’ll take care of it. He tells me we need more stone. I’m sure the look on my face is not a pleasant one. He says, Do you want me to do it? I say no, although I mean yes. I mean, Yes, if you could do it the way you would have a couple of years ago, measuring the number of cubic yards needed and discussing the size of the gravel until I want to scream—yes, that would be great. But not now. Now it would not be great and I would either be trying very hard to discreetly micromanage the entire time or else end up doing it myself, so, no. I go to my office to eat a scone and read a mystery and hope that I will clear my head and do some actual work.
81
Our whole weekend is crying and talking and binge-watching TV at night. We’re not people with conventional moral compasses, but we don’t let ourselves binge-watch during the day.
109
I couldn’t understand why I cried nonstop during these phone calls. I was sure that Brian had Alzheimer’s before the MRI; I’d thought, It’s not a surprise. But it was a surprise the way every bad thing, even as you see the flames in the distance, even as the terrible thing is upon you, breathing in your ear, hammering on your narrow bones, is still a surprise.
151
The good days still have sweetness. If I can’t fall asleep quickly, I ask Brian if I can spoon him and he lies on his right side and I spoon him and sometimes, like the old days (three years ago), I slide my hand under his T-shirt and take in his amazingly smooth skin and his smell, which hasn’t changed: wood and cinnamon. I lie on his shoulder and we watch an incomprehensible Scottish mystery. I fall asleep during a crucial ten minutes and when I wake up Brian tells me why the rocking chair or convertible or chicken coop is covered in blood. We eat a couple of cookies in bed and I point out that there’s been a change (not a bad thing but still…) in Rachel Maddow’s lip gloss and he admires my keen eye and we brush the cookie crumbs onto the floor because no one is watching. I plump my pillow so vigorously, it knocks everything off my nightstand, and he laughs and says that I’m a danger to myself and others. Those moments are all I want. I want a life of this. He sighs and I sigh.
161-162
The only sign of reluctance on Brian’s part is what he warned me about—his making conversation before taking the sodium pentobarbital. He’d said to me that he thought he might be inclined to “just bullshit around for a while” when the time came to take it. “I know I have to go,” he said. “I know I’m going. I’m ready. I’m just not going to hurry.”
He doesn’t hurry. He drinks the anti-emetic and gets comfortable on the couch. I sit next to him, holding his hand, but I have to let it go because he’s gesturing while storytelling. The stories are all about football at Yale and his coach, Carm Cozza, and I could tell them with him: Brian and a friend winding up in jail because of a young, dumb fight in front of the Anchor Bar, and Carm Cozza, stern and forgiving, bailing them out; Brian talking about quitting football because he didn’t get to play enough his first season and Carm telling him that he, Carm, would let Brian play when Brian was good enough and not before and Brian resolving to be good enough; Brian’s father and Carm Cozza playing handball together one time, his two fathers.
I cannot manage to look interested in these stories, because I’m not (Brian says nothing about his life, about our life, about our love, about the children and grandchildren, nothing about the beautiful public housing he designed and cared about so deeply or the work he did for conservation and open spaces or even, and you know I must be reaching here, about fishing), but I do try not to look like I’m in agony, which I am.
The Ladies wait in the back room (a kitchen, I think), and after about forty-five minutes they come out again. They tell us that the anti-emetic has now worn off and if Brian wishes to continue (I do, he says), he will have to take it again. They say, You can take your time, and I roll my eyes because of course he will, he always does, I think, as if we are in some other room, on some other occasion, and then I remember where I am and I’m ashamed of myself. Brian smiles slightly. “What time’s your plane?” he says, and I have never felt so bad about being me in my entire life.
He takes the anti-emetic again and the Ladies put an airplane pillow around his neck. Brian falls silent and now I long for the football stories. I take both of his hands and he lets me. IloveyouIloveyouIloveyou, I say. I love you so much. I love you, too, he says, and he drinks the sodium pentobarbital. I kiss him, all over his handsome, weary face, and he lets me.
It is impossible to think about the next twenty minutes. I keep my eyes and hands on him, as if I’ll forget what it is like to breathe next to him or feel his presence. (I don’t, not for a minute. I hear his breathing when I go to sleep and I feel his body heat when I wake up.) He falls asleep holding my hand and his head falls back a little on the neck pillow (whose purpose I now understand). His breathing changes and it’s the last time I will hear him sleeping, breathing deeply and steadily, the way he has done lying beside me for almost fifteen years. I hold his hand. I can still feel its weight and warmth. His skin color changes, from ruddy to paler pink. I sit there and sit there, as if some other thing will now happen. He is quite pale and I see that he is gone from this world.
I sit, holding his hand, for a long time. I get up and wrap my arms around him and kiss his forehead, as if he is my baby, at last gone to sleep, as if he is my brave boy going on a long journey, miles and miles of Nought.
198-200
John Paul speaks at length about Brian and their happy arguments and political discussions and at length about fishing, and even as part of me thinks, That’s a lot too much about fishing, really—the other part of me feels that my husband and his long, boring stories about fishing have been beautifully brought to life, and I am so grateful.
215
Our minister speaks wisely and warmly and I am delighted, but I barely listen.
Brian takes my hands and I cannot see anything except his face. He says, I prepared some…and then he squeezes my hands tightly and he begins to cry.
“I love you so much,” he says. “That’s all I can say. I love you so, so much and I will love you every day of my life.”
Then he says, quietly, Your turn.
I say, Middle-aged women are supposed to look for the safe harbor, for the port in the storm of life. We are supposed to look for the calm and the comfortable. You are the port in the storm. And you are the storm. And you are the sea. You are the rocks and the beach and the waves. You are the sunrise and the sunset and all of the light in between.
I think I have more to say but I can’t. We are holding hands, pressed against each other, holding each other up.
I whisper to him, Every day of my life, and he whispers to me, Every day of my life.
221-222
gigisxm's review
3.0
This is an incredibly moving story of the ultimate decision and one man's journey to go out on his own terms and a wife's gift of love and acceptance. The decision had to be am incredibly difficult one to come to and to come to terms with.
annielewis5's review against another edition
challenging
dark
emotional
funny
sad
fast-paced
4.5
Heartbreaking and beautiful. I had to listen after hearing an excerpt on this American life and it did not disappoint. As someone who has a fiancé it made me very emotional thinking about us growing old together and the challenges that come with it
sheilakay's review
4.0
Beautiful, sad book about author Amy Bloom’s husband, Brian Ameche, being diagnosed with Alzheimer’s and their search for a way he could peacefully end his life before losing his cognitive ability to make that choice. The chapters alternate between the last 4 days of his life in Switzerland, where they go to be helped by Dignitas, which is an organization committed to what they term “accompanied suicide”, and chapters devoted to documenting the time leading up to and following the diagnosis. I felt Bloom’s angst and heartbreak on every page, as she watched her beloved husband’s mind ebb and flow ever gradually away from reality, as well as her frustration at the medical professionals who put roadblocks in their path as time ticked away. The chapter where he ends his life is raw, honest, and exquisitely poignant. I finished the book wondering how we can move forward to a society that respects an individual’s right to end his or her life without the impediments Bloom and Ameche faced, even as I still struggle with the ramifications of allowing people to make that choice.