It’s 2014. Dad was first diagnosed with dementia some three years before. His first symptoms are merely an annoyance to Mum – forgetting simple things, getting confused. Things become more serious when he starts asking when they might go home.
‘But you’re already home!’ Mum says.
‘But this isn’t Liversedge, is it?’ he asks.
This man in his eighties thinks he still lives in his childhood home, a place he hasn’t seen in over seventy-five years. And there’s no reasoning with people who’ve got dementia, there’s no longer a rational base level to appeal to. He’s still making understandable contributions to the conversation but they’re based on shifting sands and can quickly become scatological or completely unintelligible – sometimes hilarious, sometimes distressing.
There’s a steady decline: he drives away in the car and doesn’t know where he’s going, returning hours later not knowing where he’s been, everyone’s frightened; he becomes a liability around the house, fiddling with the electrics, forgetting where the bathroom is; he becomes a danger to himself and Mum. She’s also in her eighties and can’t look after him any more, she can’t physically manhandle him, and eventually she makes the painful decision to move him into a home.
The first time I visit him in the home I take along the latest copy of National Geographic, his favourite magazine.
‘I got you this,’ I say.
He looks at it without taking it from my hand and I see a look of deep sorrow flash across his face.
‘It’s no use, Adrian,’ he says. ‘I can’t . . . understand it any more. I can’t . . . read any more.’
And that’s when I know he’s a goner.
He starts in the more open part of the home but imagines he’s being held captive and keeps setting off the fire alarm and trying to escape. They move him to the more secure part of the building.
I live in London; the nursing home is between Selby and York. Each time I go I notice the scale of the decline in a way my mum’s daily visits probably don’t. There’s a terrible period when he’s almost completely unresponsive but as I talk to him – a one-sided conversation – some sliver of what I’m saying connects and I see a panic in his eyes, as if for that brief second he understands the full horror of his situation.
The last time I see this flicker of comprehension he’s lying in his bed like one of the twisted bodies on display in Pompeii – his mouth hangs open, he’s wearing a nappy, I don’t know if he can even hear me, let alone understand anything I say. He looks to be in abject misery. I’m alone in the room with him and it crosses my mind that I could gently take the spare pillow and press it against his mouth and nose. He’s barely breathing anyway, and he wouldn’t have the strength to resist. I wouldn’t have to apply much pressure. How long would it take for his weak lungs to stop altogether?
I don’t do it, but I often wish I had. He hangs on for another month or so of torment.
I’d want people to do it for me. In fact, if this book could count as a living will I’d like it to be known that at the first sign of terminal distress I would like to leave this world on a cloud of morphine. At the National Geographic stage.
Given our uncertain relationship I feel strangely relieved in the week leading up to the funeral. Relieved for both of us. I can’t believe he didn’t find it difficult either. We will have no more ponderous pauses. No more of those shuffling handshakes that threaten to turn into a hug in later life but that wither on the vine in an awkward dance of arm movements. I will never know if he loved me or not, but now he can’t tell me either way, and that’s a kind of closure.
Yet inside the church I become aware that I’m bawling my eyes out and that my face is stuck into the shape of a howler monkey’s. Mum has put ‘Abide with Me’ into the service. Even at FA Cup finals I can never get through the first verse without weeping.
‘It always gets me, that song,’ I say, as I walk Mum to the graveside to throw clods of earth onto the coffin.
‘I know,’ says Mum.