The novelist Ian McEwan has advocated for the extension of assisted dying to people with dementia, commenting on the deeply distressing experience of his own mother: “By the time my mother was well advanced and could not recognise anyone, she was dead. She was alive and dead all at once. It was a terrible thing. And the burden on those closest is also part of the radioactive damage of it all.”
My mother, Pamela, a journalist, died of vascular dementia 10 years ago. My father, the football journalist and novelist Brian Glanville, died of Parkinson’s last year after living with the illness for five years. He also had a milder form of dementia. “Radioactive damage” is certainly a vivid description of the impact of caring for someone living with a degenerative illness, but the perception that someone in the last stages of dementia may be “dead” feels wrong when I think of my parents. How are you to know what is happening in someone else’s brain?
A great revelation for me in caring for my parents was a discovery I made through reading to them – that in some respects, their brains were unimpaired.
Both continued to enjoy being read to until the end of their lives. They responded positively to hearing stories, poems and novels throughout their illnesses. They retained their ability to comprehend and follow a story, as well as their knowledge of the meaning of obscure words. On one memorable occasion, when I was reading my father a series of memoirs by Arthur Koestler, one of his favourite writers, he noticed that I wasn’t reading them chronologically. I hadn’t even realised.
However, neither of them were able to communicate that they wanted me to read to them. I only discovered this by accident. My father would spend all day sitting silently in a chair, unable to move without assistance or do anything without the help of his devoted, professional care worker, Molly. To a casual visitor, he would appear to be “dead” to the world, apparently vacant. But he wasn’t – it was simply that, as I observed, Parkinson’s and dementia had robbed him of the ability to initiate a conversation or express a desire. There appears to be some kind of motor in the brain that enables us to connect with the outside world, which his illness had destroyed. It was only when the family and his care worker made the effort to engage with him, asking questions, encouraging him to communicate, that he would begin to be able to connect. And reading to him was one of the key ways that enabled us to do that. It was a bridge to the world that revealed some of his sophisticated cognitive function was entirely unaffected by dementia.
I observed exactly the same process with my mother. There was a moment when she appeared to no longer be able to follow a story towards the end of her life. Then I began reading her Doris Lessing’s delightful memoir about cats and once again my mother, a great lover of cats herself, was fully engaged.
As a result, I have learned that one must never assume that because someone with a degenerative illness is silent or uncommunicative that means they are unable to understand what is going on around them or are incapable of engaging. One has to make the effort to see if there is some way of making a connection.
There is evidence that my experience is not an isolated incident. Case studies from the charity The Reader’s reading groups show that reading aloud can have a dramatic effect on people living with dementia, triggering fluency and communication in response to a story or poem. In an evaluation of The Reader’s work, Philip Davis at the University of Liverpool concluded that reading aloud to people with dementia produced a significant reduction in the severity of their symptoms and contributed to wellbeing.
I am, of course, aware that there may be a point, with the devastating degeneration of Alzheimer’s for example, where this kind of connection becomes impossible. For me, “death”, for certain, only comes when someone physically ceases to function. People with dementia need others to advocate for them – and that includes opposing assisted dying. There are, it seems, still pleasures and connections to be made, even as the world dims all around.
Jo Glanville is a journalist and radio producer. She is editor of Looking for an Enemy: Eight Essays on Antisemitism, and Qissat: Short Stories by Palestinian Women
