The right-to-die issue has raised controversy in the SA media recently (See MedicalBrief 0057) when the death of terminally ill Cape Town man occurred just hours before a landmark High Court judgment granted his application for assisted dying. Even more complicated is the issue of what happens when the patient does not have a terminal affliction.
When well-known US university professor Sandy Bem found out she had Alzheimer’s, she resolved that before the disease stole her mind, she would kill herself, writes The New York Times. The question was, when? And how?
Sandy Bem, a Cornell psychology professor one month shy of her 65th birthday, was alone in her bedroom one night in May 2009, watching an HBO documentary called “The Alzheimer’s Project.” For two years, she had been experiencing what she called “cognitive oddities”: forgetting the names of things or confusing words that sounded similar. She once complained about a “blizzard” on her foot, when she meant a blister; she brought home a bag of plums and, standing in her kitchen, pulled one out and said to a friend: “Is this a plum? I can’t quite seem to fully know.”
Sandy was a small woman, just 4-foot-9 and 94 pounds, with an androgynous-pixie look: cropped hair, glasses and a wardrobe that skewed toward jeans and comfortable sweaters she knit herself in the 1990s. As she watched the documentary, her pulse thrumming in her ears, a woman on screen took a memory test. Sandy decided to take it along with her. Listen to three words, the examiner said, write a sentence of your choice and then try to remember the three words. Sandy heard the three words: “apple,” “table,” “penny.” She wrote a brief sentence: “I was born in Pittsburgh.” She said aloud the words she could remember: “apple,” “penny” . . . . The simplest of memory tests, and she had failed.
The next month, Sandy’s husband, Daryl, from whom she had been amicably separated for 15 years, drove her from Ithaca to the University of Rochester Medical Center for cognitive testing by a neuropsychologist named Mark Mapstone. Mapstone showed Sandy a line drawing and asked her to copy it, and then to draw it from memory 10 minutes later. He read her a list of words and had her recall as many as she could. He gave her two numbers and two letters and asked her to rearrange them in a particular order: low letter, high letter, low number, high number. Thank goodness that last one wasn’t timed, she thought to herself, as she focused all her mental energy on the task. She felt as gleeful as a kid who had earned a gold star when Mapstone said, “Yes, that’s right.”
After three hours, Mapstone gave a preliminary diagnosis: amnestic mild cognitive impairment. At first Sandy was relieved — he had said mild, hadn’t he? — but then she caught the look on his face. This is not a good thing, Mapstone told her gently; most cases of amnestic M.C.I. progress to full-blown Alzheimer’s disease within 10 years.
When Sandy went back to the waiting room to meet Daryl, she was weeping uncontrollably. Between sobs, she explained the diagnosis and the inevitable decline on the horizon. She felt terror at the prospect of becoming a hollowed-out person with no memory, mind or sense of identity, as well as fury that she was powerless to do anything but endure it. With Alzheimer’s disease, she would write, it is “extraordinarily difficult for one’s body to die in tandem with the death of one’s self.” That day at Mapstone’s office, she vowed that she would figure out a way to take her own life before the disease took it from her.
[link url="http://www.nytimes.com/2015/05/17/magazine/the-last-day-of-her-life.html?_r=0"]Full The New York Times article[/link]