Losing Her Husband Twice to Alzheimer's Disease
Author Amy Bloom's new memoir, 'In Love,' tells the story she and her husband wanted to share about his end-of-life decision
In her heartrending new memoir "In Love," author Amy Bloom lovingly and poignantly renders her husband's debilitation from Alzheimer's; his determination to end his life "while I am still myself, rather than become less and less of a person;" and her painful battle to honor his request.
Her effort takes the couple from their home in Connecticut to Dignitas, a nonprofit organization in Switzerland, which she discovers is "the only place in the world for painless, peaceful, and legal suicide."
Next Avenue spoke with Bloom, 68, about the difficult choices and obstacles she faced along the way.
Next Avenue: You literally lost your husband on January 30, 2020. But you were losing Brian for almost three years to the debilitating indignities of Alzheimer's. Was there a particular moment during Brian's decline when you knew this was no longer the man you'd married?
"I think for most people living with someone with a dementing disease, it's lived forward, understood backwards."
Amy Bloom: I think for most people living with someone with a dementing disease, it's lived forward, understood backwards. There were a series of things that piled up when he was having trouble at his architecture work, like operating the printer and following up on an email, that were so noticeable that he retired early. That was one big moment for us.
What about him did you find yourself missing most?
I missed his energy. He was always game, like if I said let's drive to Newport (Rhode Island), he'd grab his hat. He liked anything that represented change or planning. All of those things became stressful for him. For me, it was hard watching this, seeing someone who was always able to do x now struggling to do x. You feel like you're both wandering in the woods.
Was the actual diagnosis of Alzheimer's a relief at some level, a feeling of vindication that your perceptions weren't off-base?
No. I was pretty sure my perceptions weren't off-base. The diagnosis was a painful blow, not a surprise, but really painful. If you see the auto heading toward you, it's not a surprise when it hits you, but it's still painful.
In the book, you repeatedly berate yourself for not detecting the onset of Alzheimer's sooner. In hindsight is there a different approach that would have served you better?
I don't feel like I'm hard on myself, but I recognize there are moments where I could have perceived more accurately. But, of course, I didn't want to perceive more accurately. Also, there's no treatment for Alzheimer's.
You found the standard advice about how to speak with a loved about the evidence of accelerating dementia unrealistic. Can you suggest a better approach?
There's a wide range of approaches; none of them are bad. I think mostly the person who is providing the care and support needs to remind themselves that this is a hard job and you're not always going to be perfect. Forgiveness and grace are also a part of the process.
Accepting your spouse or parent wherever they are is the most important part, to have a sense what they can and can't do, so your expectations are realistic, so it's not frustrating for the person with the dementing disease. You can be one step at a time in your directions; make decisions about transportation; be flexible, but also knowing your limits.
You made the difficult decision to support your husband's conviction that he'd rather "die on my feet than live on my knees." Did your growing sense of losing him help strengthen your ability to support his desire not to lose more of himself?
I could see some cognitive function he was losing, especially in his memory. His determination and understanding of the path ahead of him was clear, his discernment unimpaired. I felt he was making the right decision for him, and I understood and supported it.
Part of the story with Alzheimer's is that you don't know how long that cognitive function will last. It was a gift, Brian's clarity. He knew what he wanted, what he liked, what he went after. He was largely fearless. Alzheimer's didn't rob him of that.
At times, friends offered unsolicited advice about Brian's choice. What sorts of comments did you find particularly unhelpful?
"He was largely fearless. Alzheimer's didn't rob him of that."
We told a circle of close friends. Brian told friends 'we're here for support, if you have issues, please keep them to yourself.' Things that pissed him off clarified his thinking. Really on the whole, we were very lucky.
But sometimes somebody would email saying, Hey, I Googled Alzheimer's and there are plenty of good years. And I'd think, really, you Googled it? If you want to help, you listen, you offer sympathy and if you really want to be helpful you do something helpful, not say you'd be happy to do something. You make the casserole; you walk the dog; and you don't cry first.
What was the most helpful thing someone did for you?
My mother-in-law was unwavering in her support of Brian and his decision, and her appreciation of my supporting him. Though it was excruciating for her, it is something I'll always admire in her and appreciate. We also had a friend. He and Brian would go to lunch every couple of weeks and that was lovely.
What do you say to those who sit in harsh judgment of your decision to support Brian's choice to end his life?
I don't say anything at all. People are entitled to their judgments, harsh or benign. I don't see this memoir as an argument. It illuminates what it takes in America to end a life painlessly and peacefully. Brian wanted the story told so people would begin talking about these things.
You think about how much energy goes into parenting and career choices. It seems to me we should think about end-of-life issues, too, and talk about it with loved ones. Brian and I talked about it before Alzheimer's. Agency in one's own life was something he always felt strongly about. The reason he was able to make a decision so quickly after the diagnosis was because he already knew exactly how he felt about it.
What did this experience teach you about what you want for yourself when your own time comes?
For myself, I want what I imagine everyone wants: an ending that is peaceful and painless and marks the end of a life that has joy and purpose in it.