I was talking on the ‘phone yesterday about dementia yesterday. Nothing unusual in that. I can barely remember a day on which I haven’t talked to someone about dementia at some point. And, when I talk to someone whose life is touched by dementia, there’s a familiar refrain:
“You know what it’s like.”
Yes, I do. We’re members of a club. It’s a club with a hefty joining fee and morale-sapping regular subscription. Ask us to describe it and sometimes we’re stuck for words. All of our experiences, as members of the club, are individual but we all “know what it’s like.”
So, what is it like? What words can we find to describe it? Sometimes, it’s unutterably sad. Recently, Mum has started crying out for her mother. It tends to happen when she’s taken by surprise, such as when Mandy washes her hair. The first time it happened I was with her. The sound of Mum wailing, lost and scared, made me want to do the same. Heartbreaking doesn’t do it justice.
Mum’s failing command of language is another sign that dementia’s grip is ever tighter. Yesterday, as we sat, Mum started talking but none of the words were ones I recognised. It was a collection of random sounds. It’s a language of dementia, a language only known to Mum. Laugh or cry? The choice is yours.
And yet, among the moments of chest-tightening misery, come moments of pure joy. Moments when Mum and I do the actions to The Unicorn or The Windmill in Old Amsterdam. Her chimpanzee is a thing of great beauty. Moments when we look at photos. I took this one of Mum as we sat together yesterday:
When I showed it to her, she threw back her head and laughed.
“What a lovely little bloke.”
My lovely Mum, the lovely little bloke. That’s a language I can share, even if I can’t understand where it comes from. What can you do but smile?