He killed himself. She helped him. It should have been easier

In her new book “Amorous,Amy Bloom writes about her husband Brian Ameche, a gregarious, life-affirming former college football player turned architect, and how they later fell in love in a small Connecticut town. And she writes about his Alzheimer’s diagnosis, the early days of his decline and finally his death at the age of 66.

But what sets this book apart from other memoirs of its kind is that within 48 hours of his diagnosis, Ameche made a decision: he didn’t want to live on indefinitely while the horrific, brain-consuming disease took control and destroyed him. He would rather die earlier. He wanted to end his life, he said, “while still being myself, instead of becoming less and less human.”

What he didn’t understand at the time was how difficult that is — and that our lives in the United States aren’t entirely up to us about what we want.

The book tells the terribly moving story of how Bloom and her husband fought to allow him to die on his own terms, enforcing it against all odds, even as his memory became scrambled and his decline accelerated. It explains how in Switzerland they searched and searched and found the only possible solution, and recounts the myriad setbacks and obstacles they faced, including those of neurologists and psychiatrists and well-meaning friends and inflexible government laws and reluctant ones pharmacists others.

Stipple style portrait illustration by Nicholas Goldberg

opinion columnist

Nicholas Goldberg

Nicholas Goldberg was the editorial page editor for 11 years and is a former editor of the Op-Ed page and the Sunday Opinion column.

And finally, it describes how he ended up drinking the deadly glass of sodium pentobarbital while holding his wife’s hand in a large, strange, immaculate room with lots of chocolate bowls in an industrial area outside Zurich.

For me, the story was deeply personal. I’m only a few years younger than Ameche when he began to forget things, get lost, have reading difficulties, repeat himself and suffer from mood swings.

And I’ve seen what this vicious disease can do. Both my mother and grandmother died in the late stages of Alzheimer’s disease, having lived much longer than I thought they should have.

My grandmother’s situation was particularly tragic and unnecessary. She had repeatedly told us, both before and after her diagnosis, that when she became incompetent and lost the ability to read books or remember family members or tell the time or find her way home – let alone speak or feeding herself, or dressing, or going to the bathroom—she didn’t want to stay alive. She said it for years; She had no doubts.

But for nearly a decade she lay in a nursing home bed in that exact condition, mostly staring at the wall, and we couldn’t help her until she mercifully died.

Since then, I’ve believed that people with dementia should have the right to die if they choose to.

Over the years I’ve learned what Bloom and Ameche also found: Although the US has “death with dignity” laws that allow for assisted suicide in certain cases, those laws don’t really apply if you have Alzheimer’s.

In California, for example, theEnd of Life Options Act” allows the terminally ill to request medication from a doctor to end their life. But they must have six months or less to live, as determined by a doctor. You must be considered mentally competent and ask twice for the medication; they must administer the medication themselves.

The passage of this law in 2015 was a major step forward for the right-to-die movement. Although hotly disputed, it has been hugely successful if you let it well over a thousand Californians to end their lives the way they wanted, presumably with some degree of dignity and less pain and suffering.

But at the end of the day, it only applies to a small percentage of people.

“The right to die is about as important in America as the right to food or the right to decent housing,” Bloom writes. “You have the right, but that doesn’t mean you get the goods.”

The idea of ​​extending the law – and I believe it should be extended – to include Alzheimer’s patients and severe dementia sufferers and perhaps some other categories of people who do not die within six months of death is fraught with anger and anger opponents, including the Catholic Church. Even the lawmakers who sponsored the original California law were reluctant to expand it. They are understandably concerned about the mental capacity of people with dementia to make life-or-death decisions.

Because of course not all dementia patients want to and should end their lives. Others are very sure, like my grandmother and Brian Ameche.

If the law were to be expanded, there would need to be strong safeguards to ensure vulnerable people are not being manipulated or coerced and that they make their own decisions. But there are certainly ways that people with an Alzheimer’s diagnosis or fear of an Alzheimer’s diagnosis, while they are still mentally able, can record their future care decisions in a living will that makes it clear which one point of their expiry, if anything they would like to be given medication to end their lives.

We believe that prolonging life is always the best option and that death must be averted, distracted and avoided for as long as possible. Any other attitude is considered morally unacceptable.

But I don’t buy that anymore. As Ameche himself stated many years before his diagnosis, there is no life without death. He later decided that the “long goodbye” wasn’t for him. And he has never deviated from that decision.

I admire him for that and am happy for him and his family that he was able to die on his own terms.

@Nick_Goldberg He killed himself. She helped him. It should have been easier

Caroline Bleakley

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