Terry Pratchett Writes About the Marginalization of People with Alzheimer’s

It occurred to me that at one point it was like I had two diseases—one was Alzheimer’s and the other was knowing I had Alzheimer’s. There were times when I thought I’d have been much happier not knowing, just accepting that I’d lost brain cells and one day they’d probably grow back or whatever…

It is a strange life when you “come out”. People get embarrassed, lower their voices, get lost for words. Part of the report I’m helping to launch today reveals that 50 per cent of Britons think there is a stigma surrounding dementia. Only 25 per cent think there is still a stigma associated with cancer.

The stories in the report—of people being told they were too young or intelligent to have dementia; of neighbours crossing the street and friends abandoning them—are like something from a horror novel. It seems that when you have cancer you are a brave battler against the disease, but when you have Alzheimer’s you are an old fart. That’s how people see you. It makes you feel quite alone.

The isolation and marginalization of people with Alzheimer’s and other serious illnesses is a terrible problem in our society—caused in part by fear, certainly—but also because we have devolved into a society so steeped in hedonism that when one can’t climb rocks or have sex four times a week, many think, “What’s the point of that bloke even continuing on?” (Yes, that’s hyperbole, but the point is valid.)

I recall my last hospice patient’s rueful statement to me about why he had wanted to commit assisted suicide with Kevorkian for 2 1/2 years after his diagnosis with ALS (until “coming out of the fog” and being glad to be alive). Bob told me that it wasn’t his progressive disability that made him want to die: As difficult as that was, he adjusted with each new “mini death,” (as he put it). Rather, he told me:

First my friends stopped visiting me. Then, my friends stopped calling me. Then they stopped calling my wife and I felt like a token presence in the world.

If it is our human duty to love each other—and I think that is the quintessential human obligation—then nobody should be abandoned or isolated or marginalized because they are ill or disabled. Too often, the excuse of “I don’t want to upset him,” or “I wouldn’t know what to say to her,” is actually (as understandable as this is), “I don’t want to be upset,” or “I don’t want to be reminded of my own mortality and vulnerability to loss of health and vitality.” And this easily morphs into applauding the “choice” of a person in fear of such isolation or perceived burdensome existence, to take the poison pill of assisted suicide.