I don’t know how you do it, people say.
Nor do I. It is worth thinking about, what you learn from living with someone with dementia, about them about yourself, about how we think about a lot of things in this hypercognitive world.
Anna is saying something. I’ve missed it. I say, Yes, and she looks at me, knowing I haven’t been listening. ‘What did I say?’ I don’t know and she can’t remember. She gets up out of her chair. She walks to the front door. I guide her back into the room, try to offer her a drink, get her to sit down. ‘I’m cold,’ she says. I put her shawl around her. The heating is already on, the gas bil was over £600 last quarter. We are doing our bit for global warming.
‘I want to …’ She can’t complete the sentence and looks at me, begging me to understand. She wants to go to – the toilet? Venice? Or any place in between. She is angry with me for not knowing.
It is a different world, where the wheels turn very very slowly.
It costs me £10 a time to come out of this world – to pay for someone to be with Anna, to mediate, because on her own she cannot understand what is going on around her. I think of this tenner as a kind of toll I pay for living in the ordinary world. I am living with dementia, but so is she – all of the time. No ten pound voucher for her to join the people she used to know.
I would like to think from the inside about living with dementia – what would help people living so far on the inside that you don’t even know they are there – where they are faced all the time with the transience of things, when a thought is forgotten before it can be expressed..
It’s not all bad, that’s the first thing to say. You focus on the essentials. It is not at all like meditation or other spiritual exercises. But you learn how to focus minutely on ine thing at a time. There is no time to do anything else. You remember the poem that John Clare wrote: I Am.
I am: yet what I am none cares or knows,
My friends forsake me like a memory lost:
I am the self-consumer of my woes …
I look at Anna and she looks at me. She smiles. I smile. It is not always so peaceful but for a moment we don’t have to think about anything else. .I try to imagine what it all looks like from her perspective. The blur of movement. The cacophony of sound. Meaning slipping away like a vivid dream you think you will remember but a moment later you don’t.
She says, ‘Can I go with you?’ I shake my head. ‘You don’t want to go there,’ I say. But she would, of course, still, even as she stops on the threshold, paralysed with fear.