This is something — something else — I didn’t know about dementia: I didn’t know that where forgetting of facts happened, there might be the stuffing of gaps with fiction. My mother conjures astonishing stories to prop up her collapsing cognition, to fill the spaces where Alzheimer’s has dug huge holes in her memory.
She leans towards me conspiratorially during a conversation, as if she is about to deliver a secret she doesn’t want anybody else to hear: “My husband left me, you know!” Her tone speaks to outrage and then, presumably because she takes my shocked expression as invitation to elaborate, “Yup, he just upped and left! Just like that,” and she gestures with the sweep of an arm and the click of fingers.
“Mum! He didn’t!”
My reaction is swift and instinctive. I can’t help it. I feel compelled in that instant both to stand up for my dad, who was killed in a road traffic accident before he was 50, and to reassure her that he loved her to the very end.
“Oh,” says Mum.
I can’t be sure what she’s more disappointed about: Dad’s death. Or the fact she’d forgotten about it.
Sometimes the inventive is drawn from whatever she has been listening to on the radio, or watching on the television; she will recount some fantastical adventure as a consequence.
“Oh ma,” I laugh, and swiftly direct her thoughts towards something else: “Tea?”
Distraction underscores much of our day now — distraction from stories spun from the screen or the visual hallucinations she swears are real.
“I saw a family walking across the garden the other day.”
“Did you, Mum?”
“Yes, they looked quite lost. I thought to go and ask if I could help direct them to wherever it was they were going”.
(This from my mother who cannot always navigate her way to the bathroom.)
“I decided they could probably manage without me.”
“Oh right, yes, good idea”.
Or sometimes, and in some distress: “Why do those people keep staring at me? Every time they walk past the window they stop and stare in. I wish they’d just go away.”
“I’m sorry, Mum, they’ll go soon. Tea?”
She settles and the moment passes.
I stop putting the news on the telly for her when she begins to fretfully ask if the bombs will fall anywhere near us: “Are we safe? When will they come? How far away are they?”
It takes a moment to understand what’s generating this particular anxiety. And it won’t help trying to explain the far away geography of Putin’s Russia and beleaguered Ukraine. Place names are long gone. I decide it’s easier to stay away from the news channels altogether.
It is more difficult to know how to respond when she vehemently denies my siblings and I are her children.
“Do you know,” she will tell me with a little twinkle, “she [indicating my sister] has been telling me tall tales again?”
“She says she is my daughter,” and she roars with laughter.
“Well, she’s my sister.”
Her expression says: And? So?
“I’m your daughter. So if she’s my sister, she must be your daughter too”.
Mum is aghast: “No you’re not!”
And then she presents an argument to articulate the reason we absolutely cannot be her daughters:
“I would never have chosen your names for my children.”
I can’t decide whether I’m offended, for there is a small sneer to her tone — “your names” — or amused. Later I will wish I had asked her what names she might have chosen instead.
Sometimes these conversations spin as farce, because she insists on winning the argument (and this is another new facet to my mother’s dementia-distorted character: the determination to win an argument, the will to argue at all): “How come, then, in all the years I’ve been visiting you, you’ve never told me, not once, that you are my daughter?”
There are no answers. I give up.
And that’s probably wise: As David Robinson, consultant geriatrician at St James’s Hospital says, you won’t win an argument with somebody who has dementia: “I learned that years ago. Best just agree with them, and I often do — sometimes it’s Wednesday all day, every day.”
My husband wants to know why I sometimes press this fact of kinship. (His is the easy position of one who has never had a relationship with a parent sheared apart by dementia.)
It isn’t because I am distressed by it, I explain, not any more. “It’s because I want her to know she has family, family who care, who will look after her.”
When I ask her where her children are, she does not know. (Nor does not seem perturbed by this.) All she does know — today — is that I am not one of them.
We decide to agree to disagree — “Let’s leave it, then” — as Robinson advocates when he says, “I think not upsetting the person with dementia is paramount — people with dementia live in the now, their past is being erased and they find it impossible to conceptualise the future. Making sure they remain content in the here and now would be one of my primary goals.”
Instead we contemplate the sunset. Mum likes to watch the light of dusk every evening, pondering where the sun is going — underwater? She is less interested in my scientific delivery on the changing colour of the sky as it sinks, she cares only for the tangerine flare which makes the clouds blush.
“Does it help, Ma?” I ask, “to know that your husband, my dad” — for I hijack every opportunity to reinforce our relationship — “died? Isn’t that better than thinking he abandoned you?”
She considers my question for a brief moment.
“I’m not sure,” she says. “If he had left me, you see, there might be a chance he’d come back.”
And I am sorry then to have usurped a hopeful fiction with the cold hard facts of life.
Keeping Mum: A dementia diary
- ‘I forgot you were my daughter’
- Time for a holiday
- Is depression key?
- ‘Cures’ are too hard to resist
- Mum is aghast when I say we’re her daughters
- Mum remembers nobody
- Mum only has today
- Everything about my mother is shrinking