Written by Justine Brooks


Living with dementia

Five years ago, Justine Brooks’ mum was diagnosed with vascular dementia. As Justine has discovered, it’s a disease that moves the goalposts.

elderly woman
I’ve walked past the corridor beds on ward 8 at St James’s Hospital in Leeds. Through the doors to the high risk falls ward where the much-reduced figure of my mum sits on a bed. There are six old ladies in here. Six in the next room, and the next, and the next. There’s a nurse sitting in the doorway. She’s here all the time to make sure no one falls over.

“Hi Mum,” I say.

She stares at me and looks puzzled and then says, “Sorry, who are you? I don’t recognise you.”

Today she doesn’t recognise me but at least remembers when I explain. I know to keep calm when I’m explaining and I’m careful not to touch her unless she reaches for me. She’s wary of physical contact. Sometimes she’ll take my hand. Other times she tells me to fuck off.

And even though she has been here a week with those horrific infected ulcers on her leg, I still need to explain to her that she’s in a hospital. And why. She seems vaguely aware of the pain in her legs.

She goes quiet, as she often does, and I wonder what her thoughts are. I’m thinking: how much time can I spend here before I do the school run? What shall I make for dinner? When will I get time to walk the dog? Mum clearly doesn’t think in this way any more.

“Recently, a friend who has been there said to me, ‘The thing with dementia is, you have to do your grieving when they’re still alive.'”

I try not to ask questions; they usually cause her anxiety, even if they’re about something obvious like whether she likes custard. She used to love custard. I remember her scolding me for taking a photo of her drinking it straight from the jug. Now she doesn’t even know what makes her happy.

There’s a menu sheet on her bedside table. Now that Mum has been in hospital a few times, I know that I need to fill it in because she won’t. And if she doesn’t, she gets whatever no one else wants – and often she can’t chew that properly so she doesn’t eat. She has dropped 10 dress sizes in the last two years. I tick custard and hope that when it comes she’ll like it.

Mum went to live in a nursing home last summer after a fall prompted my long-suffering dad to finally admit that he could no longer cope with her behaviour: refusal to eat, drink or take meds; her rearranging of the house, hiding things in unlikely places (keys in a sock inside her pillowcase); insomniac nights; paranoia, delusions, hallucinations, mood swings, verbal abuse, agitation and aggression.

The effects of vascular dementia on the brain.

The effects of vascular dementia on the brain.

She was diagnosed with vascular dementia nearly five years ago. Vascular dementia is different to Alzheimer’s. It’s caused when blood supply to a part of the brain is cut off during a stroke and has different symptoms.

Like Alzheimer’s, it’s degenerative and, as I’ve discovered now I’ve met a wider community of dementia sufferers at the home where Mum lives, it manifests itself in all sorts of ways. Some people stop being able to speak. For some, words come out, but they’re not the right words.

I’ve recently noticed my mum searching for words the way a couple of years ago she’d search for memories, or names. She often finds it difficult to connect objects or concepts to words. Sometimes words she hears have no meaning for her.

Recently, a friend who has been there said to me, “The thing with dementia is, you have to do your grieving when they’re still alive.”

It’s true. You watch helplessly as the woman who brought you into the world – held your hand, wiped away your tears, was your friend and confidante – slips away, slowly, one week at a time. What you’re left with is a person who both is and isn’t your mother.

I remember (always be thankful for your memories, don’t take them for granted) my mother’s fabulous dressing table, laden with expensive creams and potions that my father must have spent thousands of pounds on over the years (at 86 she still looks beautiful and has wonderful skin so perhaps it was worth it, I don’t know).

After she went into the home I went through her stuff and realised that she had been mixing up the contents of those jars and bottles with each other, creating strange concoctions the way children make mud pies.

In the home her dressing table has a hairbrush on it, but she has no interest in these creams that she used to love so much. Possessions no longer mean anything. Her watch, her wedding and engagement rings, her earrings. She has one necklace that she sometimes plays with. That’s all.

“‘Your dad’s dead, love,’ he says, his voice filled with care. She’s upset. She’d forgotten. ‘He died in 1966. That’s 50 years ago now. You don’t need to be upset, love.'”

We spend so much of our lives chasing after these gaudy things and yet in the end they are meaningless. And in the end we have and need very little. Food, shelter, water, air to breathe.

I sometimes meet other people who’ve experienced this cruel disease. They inevitably say, “Does she still know who you are?”

That’s the benchmark, the point when they haven’t got a fucking clue who you are. And when you’re made aware of that benchmark by these people with haunted eyes who have spent week after week visiting loved ones who no longer know them, that’s what you realise you’re waiting for.

So when the day came and my Mum stood there in the hallway of the home where she now lives and said, “You’re not Justine. You’re not my daughter, you’re someone impersonating her, you’re an actress pretending to be her,” I was devastated. This is it, I thought. This is where she starts to forget me. I went home and cried.

And yet today, when she really doesn’t know who I am, I’m calm, I’m accepting, I’m not upset. That’s what happens with this disease: it moves the goalposts. Or perhaps that’s about human nature’s ability to adjust to any kind of situation. In either direction. Most of life hangs on a thread, doesn’t it?

elderly man in old persons' home
In the next bed to my mum’s there’s a lady called Sarah*. Her husband is filling out the menu sheet too.

“Shepherd’s Pie?”

“That sounds gorgeous,” says Sarah.

They rattle through the menu together, until they’ve made all the choices for tomorrow’s meals.

And then she says, “Where’s Dad?”

“Your dad’s dead, love,” he says, his voice filled with care. She’s upset. She’d forgotten. “He died in 1966. That’s 50 years ago now. You don’t need to be upset, love.”

“It’s just that it’s difficult when you hear something like that,” says Sarah.

“And where’s Mike?” she asks.

“I’m Mike. You and I have been married 63 years and I love you. And as long as we’re together, everything will be alright. We don’t need to think about the past, or the future, just about what’s happening right now. And right now I’m here with you. You’re in hospital because you had a fall and the people here are going to help you get better. And then you’ll come home.”

She thinks for a moment, and then, “I’m sorry love. It’s just my mind. I’m going round the bend.”

“No love,” he says, “We’re going round the bend together.”

I glance over at the nurse sitting in the doorway. She has heard it too, and her eyes are also full of tears. I suddenly think that in every bed in every room of this hospital ward filled with old ladies there is a story of heartbreak, of loss, of people mourning before their loved ones have died and of people stripped of their precious memories.

*Names have been changed.


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Written by Justine Brooks

Justine lives in beautiful north Leeds with her 12-year-old daughter and a lurcher called Lionel. She runs a PR and marketing agency and is writing a novel.