When Amy Bloom’s husband Brian grew increasingly confused — struggling to read books, forgetting names, getting lost in the supermarket — they saw a doctor, and an MRI confirmed that he had Alzheimer’s disease. He realized that his life as he knew it was ending; and spending years without cognition, he said, was “not for me.” A few days later, standing in the kitchen, Brian told Amy that, when the time was right, he wanted to die by assisted suicide. It became her mission to accept and honor his request.
Two years after Brian’s death, Amy has come out with a book, In Love: A Memoir of Love and Loss. And while it tackles death, the memoir reads as a love story, full of humor and tenderness. Here, I spoke to Amy about their profound experience…
Photo by Elena Seibert
I’m so sorry for your loss. What did you love about Brian?
As a friend of mine once said, he was a big dog. He had a lot of personality and a big laugh, and he was physically a large guy. One of my favorite qualities was that he was just game. If you said, ‘Oh my gosh, there’s a costume parade in Bridgeport, plus there will be food trucks,’ he’d grab his hat.
How did you first notice that he was becoming more scattered?
When you’re middle aged, you sometimes walk into a room and think, I can’t remember why I walked in here. But when people become ill with dementia, it no longer becomes an incident, it becomes a pattern. I began to notice Brian’s pattern — the change in the way he dressed and the way he spoke and difficulties with balance, which, because he had always been an athlete, had never been an issue.
When Brian was diagnosed with Alzheimer’s, you described his immediate clarity: “Before we fall asleep, Brian muses about about his wish to control his death and how I will arrange that for him. He’d made up his mind after 48 hours and never wavered. We cried and I agreed and he said to me, You go research it. You’re so good at that stuff.” What did you think about his decision when he told you?
We had both sat in the neurologist’s office, so there wasn’t anything we didn’t both share in hearing and understanding. When he said, I know what I’m going to do and you’re going to help me, I thought, oh no, and then I thought, of course he’s going to do this, this is 100% who he is.
What do you mean by that?
Well, Brian played football from the time he was seven until he was 22. He was a defensive lineman; he would knock you down and take the ball away. He was a strong, fearless person, and he always took things into his own hands, and behaved as if he had the right to do so.
You then began the difficult process of figuring out how Brian could die on his own terms. Some U.S. states have “right to die” laws, but Brian didn’t meet their qualifications (for example, having a medical professional declare that you have only six months to live). Finally, you found Dignitas, a nonprofit in Switzerland that helps people end their lives painlessly. If you had a magic wand, what would you change about the overall process?
My wish would be that it would be more possible to arrange your own painless, legal death in the face of a terminal illness, even if the termination point of the illness is many years out.
In his memoir When Breath Becomes Air, my brother-in-law Paul talked about the importance of finding meaning in your life, however you define that. You don’t want to extend your life only for the sake of your body continuing.
Yes, a friend told me about hearing a doctor explain how in med school, they were taught that death was the enemy, always. I understand that, but there also has to be a point with death when it’s not a fight, it’s about making peace.
It makes me think about how illnesses are often described as a ‘battle,’ but the problem with that metaphor is that dying is then considered ‘losing.’
I agree. If the model is a prize fight, sooner or later, death will win. That’s the way the system works. Why are we making this some sort of American gladiator nonsense? Maybe it protects people a little from reality. But there are more important ways to win.
What are the more important ways to win?
Being able to think about your own life and be at peace with your decisions and your regrets and your hopes and things you didn’t get to do and things you did get to do, and being engaged in your relationships as long as you can be, and being as much yourself as you can be for as long as you can, is, to me, a more meaningful aspect of life.
You wrote about how, on January 30th, 2020, you and Brian traveled to a Dignitas apartment in Switzerland. You listened as he told stories about his old football days. Then he told you he was ready, and he drank a lethal dose of sodium pentobarbital. You wrote about his death: “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.” When you think back on that day, how do you feel?
I still remember it as agonizing. I don’t think that time will ever change that feeling.
When you returned home, what did friends do or say that was helpful?
When you’re grieving or taking care of someone who is ill, being asked a lot of questions is not what you need. I really appreciated people who didn’t say, ‘Tell me how I can help,’ but instead said, ‘I left a casserole on the porch,’ or ‘I mowed your lawn.’ You need kindness, acceptance and affirmation, in whatever form that takes.
Before he died, Brian said, “Please write about this.” Why do you think that was important to him?
Well, he was a fan of my work, which was nice. And also he felt strongly about these issues, even before they shone in his life. He was a tremendous supporter of women’s rights and a woman’s right to choose, and that extended to the idea that people should have the ability to shape their lives and make decisions that affect them, without a lot of interference.
Are you nervous about how some people might receive the book?
So far, the emails that I’ve gotten have been so positive and appreciative, I am truly touched. I have gotten messages from people who took care of spouses in similar situations; and medical professionals; and of course there will be people who would not make the choice that we made and I certainly respect that.
If readers take away one message, what do you hope that is?
I hope people get to live a life with purpose and joy. Part of that purpose and even part of that joy is to allow yourself to contemplate the end of your life. I hope people use this book as an opportunity to talk about their worries and hopes and decisions for their end of life and not just feel that this is so terrible to contemplate that the best solution is to not talk about it at all.
It reminds me of the Carl Jung quote, “Loneliness does not come from being alone, but from being unable to communicate the things that seem important.”
Facing the end of life together is hard, and nobody does it perfectly; elegance and ease is not required. Being honest is what’s needed.
What do you miss about Brian?
I miss the noise and the energy and the fun. And the love. He was a very loving person. This was not a cold character; this was a very warm, engaged person. I still feel his presence, but I miss his being in the world.
What do you think he would have thought of the book?
I got an email from his oldest and best friend, who said, ‘I hope you know how much Brian would have loved every minute of his book.’ It was very kind of him, and I think he was right. Brian did not hate the spotlight. And I hope he would have felt I had done a good job.
Thank you so much, Amy.
P.S. More on grief, including how to write a condolence note, talking to kids about death, and how do you think about death?
(Top photo by Liam Grant/Stocksy. Photo of Amy Bloom by Elena Seibert.)