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Dementia friendly.
I struggle with the phrase. I know what it means, what it’s meant to mean. Accommodating of the illness. Compassionate. Tolerant.
My mother’s bedroom slippers are apparently "dementia friendly." Except they aren’t; they’ve lost their non-slip. “These slippers make my feet go like this,” she says, and—because the language to describe this eludes her—she shows me, from her seated position, how her soles slide when she tries to stand up.
Her footwear has lost its grip. Her feet run away from beneath her. Carers do that too—lose our grip. Long to run away from beneath the weight of all this. We're only human.
I weep when my mother has bad days, when her paranoia invents monsters that I must wrangle with in a world of terrible fiction and make-believe. Some days I cannot keep up with the fabrications her pitted brain conjures to stop up the holes that Alzheimer’s eats into it.
My voice is snagged on a silent scream as I sit and try to patiently persuade my mother to drink the soup I have made her. With parsley—for the iron—and garlic—to prop up her increasingly frail immunity. And love. Always with love.
“I don’t like this.”
"Try it," I beseech, in tones you might use with a recalcitrant toddler as you hold a spoon, animated as an aeroplane, in front of pursed lips.
And briefly, a memory, my memory (of course it's mine): My mother reading Dr. Seuss's Green Eggs and Ham to my picky-eater of a brother, "You do not like them. So you say. Try them! Try them! And you may.”
“I am full,” she says, “I made my own soup earlier. I ate that,” as she pushes her mug away, my mother who has not cooked in years. Who could not stand at a kitchen counter to prepare anything, no matter how "dementia friendly" the lighting, the apparatus, the slippers she stood up in.
I take issue with the word "carer" too. It sounds soft-sided and fluffy. A feather comforter of a companion.
But I am not these things. Carers are not these things; we cannot afford to be these things. You need to have a spine of steel to do this job. Literally, metaphorically, often: I hoist my mother, whose legs buckle frighteningly without warning so that I must grip her about her middle, keep balance for the both of us as I lower her to the loo, as I peel her diaper down simultaneously. Or as I push her bodily to the centre of her mattress at bedtime so she won’t tip out either side.
And you need to be strident: to argue with doctors, to urge pharmacists to explain scripts, to augment drugs, to replace old meds with newer—usually more expensive—ones.
And "carer" speaks to me of acquiescence. But I won’t accept my mother’s illness as an unavoidable fate I must expect to happen to me. Too many people believe this cognitive fraying is an inevitable part of getting older. It’s not. Too many medics believe the same.
Not enough of any group understands it is terminal. But it is. "Carer" suggests to me that I take all of this lying down.
To stand your ground you need to be cast of iron. And we are—we carers. We have to be: to bear witness to the exquisite slow pain of a parent’s death as they stop recognising their own children and then, as if the horror of that were not enough, stop being able to move, eat, drink, swallow, speak.
Breathe.
I will care for her right to the end and I will wrestle against this most unfriendly of diseases as I do.
Call me a fighter. Not a carer.
