One step forward, two steps back

It seems like my dad is walking again, with someone beside him for support. Yet another example of how dementia constantly shifts. It seems to be one way – and then it’s another. In a few weeks, it’ll probably change again. Nobody really knows.

But you can’t let yourself believe there’s real progress, or that he’s getting better. Dementia is degenerative. It’s one step forward, two steps back – and eventually, no steps forward at all. Still, I’m glad he’s mobile again, even just for now.

What he really needs is a walker, but the staff say it’s too advanced a stage to teach him something new like that. That’s one of the hardest things to accept with dementia: you may try to help with mobility or memory and make small improvements for a while, but it’s an uphill battle. There’s always a sense of too lateness.

When he first started showing signs, I had this overwhelming urge to make him better – to teach him, the way I would with my kids. “Here’s what you should say in this situation.” “Here’s the word you’re looking for.” But sometimes it felt like pouring water into a bucket with a hole in the bottom.

One afternoon, after getting a big piece of work off my desk, I find a rare couple of free hours to visit him during the week. I’m used to coming to the care home on Sundays, when someone can take the kids and I don’t have to juggle work.

When I walk into the lounge area, he sees me – and says my name. It feels like a miracle. I didn’t expect it at all. He may not even be saying it to me or using it for me – but just hearing my name in his mouth is astounding, heartening. I haven’t heard him say it for so long. The name he and my mother gave me. The name he must have called out thousands of times over the last 40 years. The name I never ask him to say now – I’d hate to test him and make him feel bad for forgetting.

The care home residents are watching a TV quiz that seems like a rip-off of Wordle. I love word games and can’t help blurting out the answers – the fully grown, swotty girl in me still eager to be right. Maybe I want praise, especially from my dad, who sits beside me smiling quietly.

He would’ve been so good at this game. He’s where I got my love of words. He was a journalist. He did cryptic crosswords.

I remember beating him at Scrabble for the first time as a teenager – what a moment that was. Me realizing I could win against a parent, him realizing I was growing up. He used to get annoyed at how long I took with my turns – once, he got so bored he started reading the newspaper mid-game, which we all found hilarious.

In this moment, I want to turn to him and say, “You would have been so good at this game.” But I don’t know how he’d take it. I feel his body next to me, but his mind is somewhere else. And I realize: dementia feels almost like a haunting. He’s like a ghost of my father sitting beside me – I can feel him, but I can’t truly reach him.

Suddenly, I feel absurd sitting in a care home in the middle of my working day, surrounded by residents dozing on the sofas, the summer sun beating down outside the windows. Outside, people are going about their lives – working, collecting kids, doing chores. And I’m here, showing off that I can guess the words faster than the contestants on the screen.

But this is one of the rare times – maybe even the first – that I leave the care home without crying in the car. Am I getting used to this? He seemed content. He said my name. He didn’t try to get up and leave with me, which always makes me anxious and guilty. I feel lucky that I have a flexible job that lets me spend time with him.

But the next time I come – back on a Sunday – I find it upsetting again. He seems like he wants to tell me something, keeps starting sentences, but can’t finish them. I can only ask leading questions: “Is everything okay?” “Are you happy?” He always says yes, but I wonder if it’s just an automatic response. An ingrained politeness.

He seems to want me to leave. Maybe I’ve disrupted the rhythm of his day. Then he suddenly produces a fluent phrase: “Shall I escort you…” I tell him I need to go and give him a hug. I’ve only been there ten minutes.

Yet he tries to leave with me – he pulls himself up, unsteady, as I walk away. I rush back, afraid he’ll topple over and hurt himself. There’s a particular kind of fear and potential humiliation in watching your father so frail, wobbling on his feet. I remember this feeling from our walks back when he lived at home. It’s all backwards – he was the one who was supposed to catch me when I fell.

A kind nurse sits with him while I take the long walk down the corridor to the lift. I don’t cry again, but in the car I feel anxious and off-kilter, my heart racing. I don’t know what he wants. I don’t know if I did the right thing.

One step forward. Two steps back. And back.