The Sword of Damocles has nothing on Dementia. Dementia is not a single sword over our heads, it is a hundred, a thousand, a million precipices on which we balance every day.
It’s having to explain to your 79 year old mother that her parents died 30 and 46 years ago, and that, truly, no-one is trying to hide them from her.
It’s picking up the phone not knowing whether it will be a pleasant chat, hyper-aggression, or tears.
It’s waiting for her to get lost. To fall. To forget to eat.
It’s knowing she needs help, but being unable to persuade her to accept it.
It’s knowing a crisis is coming, but not knowing precisely when or where or how.
It’s knowing that it is tearing your family apart at least as much as it brings it together.
It’s crying when she wants her mum, and dying a little when she doesn’t know my name.
It’s a hundred tiny humiliations when we’re out and her behaviour is bizarre.
But more than anything it’s knowing that it gets worse from here.
It’s knowing that although her days are up and down, the weeks and months are taking her inexorably downwards – down towards what her dad became just before he died: a tall, thin, shrunken, fragile skeleton under a sheet, who didn’t even know we were there.
It’s not knowing how to stop the permanent fight-or-flight state of readiness. The constant fear that the next time the phone rings it will herald the latest crisis. Or that the next thing I say will be what sets her off.
It’s the guilt and shame of being almost as afraid of her, and of her future, as I am for her.
Dementia is a brain wrecker, a home wrecker, a life wrecker. It’s over our heads, under our feet, and heavy on our shoulders. And it gets heavier every day.