Amy Bloom: “Helping my husband die was my way of loving him”

IN Love and loss. memory (Folch & Folch), writer Amy Bloom (New York, age 69) talks about her experience as a suicide assistant in a Swiss clinic for her husband Brian Ameche. The member of an Italian and Catholic family, an architect and former football player at Yale University, it was clear that he did not want the life he had to live after being diagnosed with Alzheimer’s disease.

— Did your husband ask you for help to end his life?

— When he told me that he would rather die on his feet than live on his knees, I insisted: “I can take care of you, keep you at home as long as you want, as long as possible. You don’t have to do that.” And he would tell me, “You’re not listening to me. I don’t want that kind of life.” He was so clear and so firm in his decision that loving him also means doing what is so important to him. Brian was a very determined and persuasive person. He cares about the right to choose, both philosophically and personally. He knew what he wanted and he also knew he needed help to achieve it. And I think that was what he expected from me, what he understood as part of the marriage, as a couple. He didn’t want to be a passive, diminished object, to stop being himself. He wanted to be the first to hit the table: to be able to arrange his peaceful death.

What obstacles did you face to achieve this?

—In the United States, as in many other countries, if you suffer from dementia it is very difficult to find a legal end-of-life system. I think it would be good if families talked more about how to deal with the end of life. It seems very wrong to me that those who are clear about how they want to end their life, or are faced with a terrible illness that seems unbearable, cannot act on their wishes.

— In the book, he manages to make the quest they undertake have comical moments.

– In my life experience, there was dark humor in difficult moments, as in this case. Maybe it’s my temperament.

— Emphasizes that assisted suicide requires bureaucratic procedures that usually arrive after the death of the applicant.

“It happens to most people. You are going through a moment of grief and you have to do things that seem absurd and meaningless, but become necessary. We lived in a different universe during that period.

— One of these procedures is to show the absence of other people’s interest in death.

—Technology is what enables the work of Dignitas (a Swiss organization that helps the terminally ill to die). If you show that you have no financial interest in the person’s death, they can help you. In our case it was true, but sometimes it’s hard to prove. I understand the fear that someone will pressure a family member to end their life because it is very expensive and very difficult to support them. I understand the desire to protect people in these circumstances. But not everything you have to prove can be easily verified on many occasions.

— Reducing the interests of the family to the economy seems debatable.

— These situations are complicated and tense. Generally, governments don’t want to interfere and deal with it by making strict rules; You can’t do it… or you can do it with these conditions. It is very difficult for families to provide care and they receive very little support to do so. Often they have to take that person to a care center they don’t like and everyone suffers. But I don’t criticize anyone who says they wouldn’t do such a thing, that they would always keep their partner at home.

— The requirement not to suffer from depression also seems ambiguous.

“I was ready to accept any outcome. Being diagnosed with Alzheimer’s disease is not the same as struggling with clinical depression. The neurologist who analyzed Brian admitted to me at first that she did not rely on an in-depth interview or his history of clinical depression, which he did not have. It was easy to assume that he must be depressed, since he was undergoing psychotherapy and had been diagnosed with Alzheimer’s disease. But it wasn’t like that. The great gift of Wayne, his psychiatrist, was to sit and listen to Brian to understand his emotions, his history, and his cognitive function, which was still pretty good.

— What influence did writing and the success of the book have on you?

“Bryan wanted me to write it down, so people would know and think about these issues more. I didn’t feel inclined to, I’ve never been interested in writing a memoir and I’m a person who is quite jealous of my privacy. Writing was a complicated experience; Turns out you can type while crying. I didn’t know how the readers would receive it, but after its publication I received hundreds of emails from people who wanted to tell me what happened to their father, mother, partner… It was an important book for my husband and it was the same for me .other. And I’m glad it is.

– Has your life changed?

—The lesson I learned is to attach great importance to small things. The sunset, the first steps of a child, the light projected on the water. I no longer consider such things trivial. I think they are important.