The word ‘dementia’ is not enough to name an illness that has been likened to a slow death

A handful of friends understand this journey. Some are ahead. Others a few paces behind. I hold aloft the crude torch I am trying to fashion from the little I have learned. I sweep the dark as I grope my way through. I can just see my mother: she is small, receding. A shadow of her brilliant self. Sometimes my light is bright enough that the once sharp outline of her is briefly illuminated.

Mostly, though, I battle to see her at all.

My friend Lesley is one of those who understands something of where I am. I watch her, tall and blond, with my mother now. Mum looks tiny. Lesley has to stoop to hear her. Mum is telling her the same story for the fourth time in less than 30 minutes. Lesley doesn’t betray a hint of boredom. I see how she supports my mother when she walks, unobtrusively, by her elbow. I am struck by her kindness, and the camaraderie of understanding where I am lends courage.

Years ago, as she clawed her way out of another of the depressions that plagued her for decades, I asked Mum, “What do you think of the word: Depression”. “It’s not big enough,” she said simply

We talk about this illness often: Lesley and I.

Like me, she hates the word: Dementia. It speaks too bluntly to madness.

“We need a gentler name for this horrific, shrivelling disease,” she says, of the illness that began to steal her mother from her even before she died.

Years ago, as she clawed her way out of another of the Depressions that plagued her for decades, I asked Mum, “What do you think of the word: Depression?”

“It’s not big enough,” she said simply.

Not big enough to capture the magnitude of the sickness it names: Depression.

[ What should we be aware of when dementia becomes part of our family health history? ]

Almost every other word the Thesaurus offers better describes the collapsing of the spirit more concisely, more sensitively, than the one we have chosen: despair, hopelessness, dejection. They’d all do a better job. And none bear the dangerous everyday connotation of flippant, exhausted use.

I’m so depressed.

Lewis Wolpert in Malignant Sadness suggested that the illness deserved some special word of its own, “one to encapsulate both the pain and the conviction that no remedy will ever come. We could do,” he wrote, “with a better word for this illness than one with the mere common connotation of being ‘down’.”

William Styron, in his memoir, Darkness Visible, felt obliged to “register a strong protest against the word depression”. He believed “melancholia” was a better one, and regretted it had been “usurped by a noun with a bland tonality and lacking any magisterial presence, used indifferently to describe a rut in the ground or economic decline”, a word that, he said, “has slithered innocuously through language like a slug, leaving little trace of its intrinsic malevolence and preventing, by its very insipidity, a general awareness of the horrible intensity of the disease when out of control. A true wimp of a word for such a major illness,” he concluded.

I could never come up with anything other than Depression (with a capital D). Not only because the capital letter elevates a word to superior noun (proper noun, proper illness), but because Depression, despite the fact it saps the human spirit to the point of non-existence, always has a presence. Like a person. It is impossible not to be influenced by it. And it helped me to recognise it as something separate from my mother: she was not her herself when ill.

“I went to get that thing with words in it.” She means a book; a book she mostly cannot read and certainly cannot understand

My mother has already registered her distress at the word Dementia.

That means I am demented, DEMENTED! Am I going mad?

The Merriam Webster dictionary throws out these cruel words as a selection of synonyms for dementia: insanity; derangement; aberration; lunacy – and yes, madness. But how will we treat this devastating condition with respect, with compassion, if it is pasted with such frightening labels?

We won’t if we attach monstrous descriptors to it.

I ask Lesley: What do you think of the word Dementia? It conjures an image of old age, she said, “when it’s so much more than that”. It needs to make it sound more serious, not inevitable or acceptable “because a person has reached a certain stage in life”.

What word to summon the image of a giant eraser being swept carelessly and cruelly across the blackboard of a life, rubbing it all out so there is nothing left?

What word then, what compelling word, could we substitute? What would gather all the facets of this illness in a single phrase, one that describes the fraying of edges, then the stealing of whole histories? A word that speaks to a robber of language so that my mother must say, “I went to get that thing with words in it”. She means a book; a book she mostly cannot read and certainly cannot understand. A word that would describe the manipulator of moods and minds so that my gracious mother turns on me in uncharacteristic fury or treats me with the disinterest of a stranger. Something that chronicles the loss of inhibition, of continence, of initiative and direction – not just in what to do or where to go, but how to get there. An expression that captures whatever peculiar sensation seizes mum so that she believes she is aboard a ship, a sensation so powerful she is afraid to step into the garden and walk to the car: “Will we be safe?” Will we be safe where, I ask, confused. She nervously puts a foot towards the door: “Safe getting across the sea to the car?”

We are hundreds of miles from the ocean.

What word – one, as Lesley says, with gravitas – to summon the image of a giant eraser being swept carelessly and cruelly across the blackboard of a life, rubbing it all out so there is nothing left?

Years ago, DL Trachtenberg, the caregiver of a patient with progressive cognitive impairment, and JQ Trojanowski, director of the Center for Neurodegenerative Disease Research at Penn University School of Medicine, posed an argument for the “elimination of the pejorative and harmful word dementia”. They offered a “more meaningful and non-stigmatising terminology”: frontotemporal disease.

It’s a better phrase, certainly.

But it’s still not big enough.

Not nearly big enough to name an illness that has been likened to a slow death.

Keeping Mum: A dementia diary

Instagram: @anthea_rowan

The word ‘dementia’ is not enough to name an illness that has been likened to a slow death

Dementia Diary: How will we treat this devastating condition with respect, with compassion, if it is pasted with such frightening labels?

Keeping Mum: A dementia diary

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