Do you remember those signs that used to crop up on office walls? “You Don't Have to be Mad to Work Here / But it Helps.” I always suspected that they were the hallmarks of a rather aggressive sanity. There's a type of person too – happy to announce “Oh we're all quite mad, you know!” – when one knows quite well that they're not; they're just a bit loud and attention-seeking and probably SMUG. I almost lost my sense of humour when I noticed members of a writer's group cheerfully claiming to be “mad”. Mental illness is so un-funny and I've usually assumed that most of us write to remain sane, to make some sense of our experience of life – to try to keep the madness at bay. Dementia is (currently) an incurable mental illness which gradually takes away the ability to read, write and speak. Last year I read Naoki Higashida's autobiographical The Reason I Jump: One Boy's Voice from the Silence of Autism and found unexpected insight into aspects of my mother's Alzheimer's. Recently, reading a book about Alzheimer's has shed a surprising new light onto story-making.
The book is Where Memories Go, Sally Magnusson's account of her mother's dementia. It's a fine book and deserves all the praise it has received. I avoided it initially as I struggle to retain my emotional balance through the challenges of my own mother's illness and I'm still not certain that I'd urge it on anyone else who is currently directly responsible for the care of a dementia sufferer. Sally Magnusson, her sisters, wider family and carers were heroic and extraordinary in their efforts to see their mother through the last grim stages of Alzheimer's and safely into the good night. Yet her suffering was profound and the later sections of this book struck a chill into my heart.
Usually I like to know what I'm letting myself in for. Magnusson offers a particularly clear explanation of the invisible sequence of neural devastation that begins by laying waste to the brain's frontal lobe (responsible for insight, planning, organisation, personality, initiative), then the two temporal lobes (processing and interpretation of sound, formation and understanding of speech), followed by the parietal lobes (integrating input from vision, touch and hearing) and the occipital lobe at the back of the skull (responsible for the processes of vision). This helped me, for instance, understand why dementia doesn't content itself with stripping away the capacity to recognise things, places and people. Its cruelty goes further as it offers delusions and hallucinations as the disease progresses from the front to the back of the skull.
A few years ago Mum was well enough to laugh with me when she heard herself asserting that the rather solidly-built local curate had “flown in through the window” to visit her. Recently I listened to a friend describe how a woman with early-onset Alzheimer's became terrified by her perception of the stairs of her house dissolving to goo – and it wasn't funny at all. I play “what-if” with primary school children when we're constructing adventure stories and I'm interested to notice how frequently the ground beneath their feet fails and they fall, like Alice in Wonderland, to somewhere else. Primary school children are immensely resourceful at finding their way back to safety in their stories. Or they simply declare that “it was all a dream”. Dementia sufferers can't do this. This mental illness is the most intense experience of alienation. “Ich habe mich sozusagen veloren” said Auguste Deter, the first named sufferer, to Dr Karl Alzheimer in 1901. “I have so to speak, lost my self.”
The brain struggles as it dies. In one of the most moving passages in her book Sally Magnussen describes her mother constructing a completely illogical explanation for the appearance of a marquee in a neighbouring farmer's field. Her own reactions to the story are conflicted: she admires the bizarre ingeniousness of her mother's narrative: she wants to laugh: she is tempted to “bash”her mother with superior logic: she is uneasy at whether she is doing right to go along with her mother's mistaken interpretation. “As if I have given up the compliment of arguing you into sense.”
I understood and agreed with all of this, having only that morning been struggling to persuade my mother that a distressing scene when she alleged to have have taken place between herself and me was almost entirely fictional. Mum had supplied setting, actions, dialogue for an argument between us that HAD NEVER HAPPENED. There was the smallest germ of a cause: one morning in the previous week I had reminded her it was communion, she had said she wanted to stay in bed and have a cup of tea. I had agreed. End of story? Oh no. Her secret unease at this footling piece of self-indulgence had blossomed over the intervening days into an epic of misunderstanding and recrimination that was upsetting and destabilising. I had fallen back (as so often) on the tactic of assuring her that “it was all a dream” when I read this illuminating piece of brain geography in Where Memories Go:
Neuro-imaging has begun to show that similar neural systems underpin both remembering and story telling, so it is not really surprising that when memory, mutable enough at the best of times, goes wrong, stories are prone to take over. There is even a name for this – confabulation. When key memory functions are damaged, imagining a possible explanation for an unsettling experience is a perfectly understandable response. Since the monitoring systems in the brain that would normally reject an explanation as implausible are also playing up, the explanatory story is likely to be experienced as the genuine memory..
We've all heard of False Memory Syndrome and probably most of us shy away from this troubling concept. “You mean I'm lying?” says Mum. “No, Mum, not lying ... misremembering.” It's a tricky distinction to grasp even when one's at one's most mentally robust and confident. I think it's also a little like the fact / fiction distinction when one's imaginary world seems more “real” than actual daily life. "Similar neuro-systems underpin both remembering and story-telling." My heroine Margery Allingham, growing up in a writing household, claimed to remember an outraged housemaid snatching a childish story from her hand, exclaiming. “Master, Missus and the visitors from London all sitting in their rooms writing LIES – and now you starting!” There's nothing quite as organised in a brain that is being shredded by Alzheimer's but the elaborate narratives that are spun by my mother, Sally Magnusson's mother and countless other dementia sufferers deserve a better descriptor that “false memories”. I like "confabulations" even better than fictions. For better or worse they sound Fabulous.