by Amy Bloom
Random House (March 8, 2022)
I am inclined to call this book a “page-turner”. But how can that be? It is a book about the author’s husband, Brian, who, by the time he is diagnosed with Alzheimer’s disease, is also told that the process of sinking into severe dementia will be rapid. This vibrant man in his 50s is determined to end his life while he still recognizes and can interact with his wife and those he loves.
However, he struggles to find an acceptable path to accomplish his goal. Even if Brian were to move to a state like Vermont, or any of the other nine states plus Washington, DC, where Medical Aid in Dying (MAID) is legal, he would not be likely to qualify. All states have specific requirements for a person to use the MAID process. They must be lucid and able to communicate to two doctors their wishes, as well as the rationale for ending their life, and they must be within six months of death. Most likely by the time Brian would be six months away from death, he would not be lucid or able to communicate clearly and dementia is not always recognized as a terminal illness.
At one point, when it seems there is no acceptable way for him to accomplish his goal, he considers using a gun. But that is an anathema to him, largely because of the negative impact such an act would have on the people he loves.
Amy Bloom is a professor of Creative Writing at Wesleyan University who has written several award-winning books on a variety of subjects. The topic of this book is obviously very personal, as she chronicles her husband’s slipping into Alzheimer’s. However, the book also puts this part of their story in the broader context of their marriage. It is a second marriage for both of them and she includes in the story the joys and challenges of blending two families. A real plus in reading the book is enjoying Bloom’s excellence as a writer.
While Amy Bloom and her husband did not live in Vermont, they also knew moving to one of the ten states or Washington, D.C. where MAID is available would not help them. She rightly says: “The right to die in America is about as meaningful as the right to eat or the right to decent housing; you’ve got the right, but that doesn’t mean you’re going to get the goods.” Brian understood this. Soon after he was diagnosed, he expressed interest in going to Switzerland to end his life. As the weeks and months went on, it began to look like the only viable option.
Amy contacted Dignitas in Zürich soon, and learned that this too, was a complicated process. Dignitas is a nonprofit organization offering accompanied suicide. As the author describes, “For the last twenty-two years, Dignitas has been the only place to go if you are an American who wants to die and if you are not certifiably terminally ill with no more than six months to live.” However, Switzerland has no interest in allowing depressed patients to take advantage of its “right to die” process. Doctors there want to be as certain as possible that anyone who uses the process is clear thinking, not depressed, and not being pressured by anyone. Bloom learned that Brian needed to provide various documentation, including a brain scan and a report from a psychiatrist. There were requirements that took weeks to satisfy, and 56-year-old Brian was losing agency quickly. He continued to have lucid periods, but the emotional contact with friends and family, including his wife, began to diminish.
Not surprisingly, the way people deal with the end of their lives, including those who do so on their own terms, is very individual. Brian did not want to discuss their plans with others, including most of their family. Virtually no one knew they were getting on a plane for Switzerland. But they got to Zürich, passed the Dignitas face-to-face exams, and then enjoyed a few days in the city that they had loved in previous visits, and went to some familiar places. Of course, it was different this time, but they both clearly felt these were among the best ways they could spend their last days and hours together. And then Brian ended his life under the supervision of Dignitas.
There are several incredibly sad parts of the book. But the author also conveys many happy and intimate moments as this couple thoughtfully negotiates Brian’s wish to end his life on his terms and in a way that is consistent with who he is. Ultimately, this book about a man’s decision to end his life with the support of his wife is not only sad, but uplifting.
Review by David Otto, PCV Board Member