The sandwich generation: between young children and a father with dementia

I wrote this about a year ago, when my father was still living at home and my son hadn’t started school yet.

My father has dementia. It happened gradually and then suddenly.

At first, I thought lockdown had made him temporarily lose the art of conversation. When I saw him again after those dark months in our separate homes only five miles away from each other in London, he always seemed to be searching for words, a vagueness had descended.

But then there were suddenly days when he stopped making any sense at all. Words were coming out of his mouth completely uncoupled from their meaning. He’d smile hopefully at me as he spoke, willing me to understand.

I wonder how long his mind has actually been impaired. In the years leading up to his retirement, he kept saying his memory was getting worse and that’s why he was going to retire. But I brushed off his concerns, encouraged him to keep working at the career he loved – we all did.

Once I realise what’s happening as we embark on the long road to diagnosis, I try to think of questions to ask him about the past, about his childhood in Ireland, his years at university in Cambridge, but by this time we’ve already passed the point of being able to get coherent answers. Our own minds were blocked from accepting his dementia.

It’s profoundly strange to have the person you know and love change so fundamentally and yet look more or less the same. It’s unsettling to see a person you know replaced by a doppelganger. It’s uncanny in the sense of Freud’s unheimlich, a doubling of the familiar and the unfamiliar that arouses dread, a superimposing of the child over the adult. Your older parent acts at times like your young child, unable to open a bottle of juice without your help.

He sits calmly before me turning the salt cellar above his glass of sparkling water, the white powder raining down into the cool bubbles below. He leaves troubling clues around the house – a carton of milk in the cupboard lurking among the glasses, the TV remote nestled in a sock drawer, a set of keys cooling in the fridge.

My young children only know him like this – they just think their grandfather is a bit of an oddball. It’s hard to explain to them, how his brain isn’t well. I try not to think about how nice it would be if my father was his old self, for them to have known him properly.

I seem to be so annoyed at everyone. Now my son is four years old and my daughter seven, we’re out of the difficult baby and toddler years, but I’m so annoyed still. I want my father to be well, I want my kids to listen, I want a moment to think. I feel pulled on all sides for patience, for repeating the same things over and over, for trips to the park.

My father can’t go out on his own anymore as he might not find his way back, so he waits for me to come round to take him out, in cold windy weather, in sunshine. My mother now keeps the front door locked for fear of him ‘wandering’, a benign word for a terrifying part of dementia, the panic that sets in when you realise they’re gone. My mother doesn’t walk much at all, never liked it, but my father loved going out walking, travelling, exploring the world, before this all happened, before he became dependent on visitors like me to take him out for a bit of fresh air.

On a hazy early summer’s day, I put on everyone’s shoes and bring them to the park: my father, my daughter, my son. The kids run off to the swings and I tell my father to sit down, gesturing towards a bench, but he sits on a bouncy horse and I want to laugh and cry.

I’m told I’m the sandwich generation, between the two slices of bread of young children and ageing parents. I don’t feel like the filling, I can’t seem to fill anything at the moment.

You can’t drink from an empty cup, they say.

I’m an empty cup, we’re an empty sandwich.