My Mother has Dementia

My mother was diagnosed with dementia almost two years ago. My father found her spooning marmalade into a wine glass. That, along with her slurred words, her frustrated struggle to form coherent sentences, and her propensity to sleep most of the day were early clues. After a puzzling few months during which none of us were sure what was happening or what she needed, she was admitted to a dementia ward. My father sold the family home and moved into a unit at the same retirement village to be close to her. He visited her twice a day, most days taking her out for a drive. He played piano in the village reception foyer, for everyone, but mostly for her. We put photographs and paintings on the beige walls of her functional room. We watched and listened as moving became impossible without a walker and the power of speech dodged and slipped from her grasp.

She lived there until a serious fall a few months ago, which meant it wasn’t possible for her to return to her familiar room and surroundings. She is now in the hospital wing, strapped down during the day to stop her falling over and wandering. She cannot eat or go to the toilet on her own. I don’t know if she will know me next time I visit.

I have found it difficult to write about. But it is important to try, because writing helps me to process, to make sense, and to offer something of myself to others who may be in the same or a similar situation. So I tried.

My mother has dementia.

She is losing her mind.

Not as I lose a pen, or my way, or a train of thought,

But as a victim bleeds out. They fight at first. They yell and hit and cry and struggle.

But as the red river slows, so do they, and they smile, and they give over to the grey.

It’s beautiful gentle ghastly.

The first time I visited, the smell hit me as soon as the lift doors opened. Disinfecting. Into a secure foyer with the Chinese side table (You had at least four of these at home, by the beach, when you lived there. Do you remember? One of them lives with me now, by my television), through one keypadded door into a tiny lounge (who the hell would want to lounge here?), a limbo between one world and another.

Another keypad, The combination is the date Genghis Khan invaded Beijing, says my father, and we’re inside.

It’s open-plan and warm and light. The carpet is practical, tiled. There is another smell now, underneath the bleach. A funky assault. They’ve tried to hide it.

My heart is thumping. I’m scared, shaking, blinking back tears. My father doesn’t notice.

In the lounge area, people sit in a U-shape, a large TV with silent footage of New Zealand birds the background for a smiling nurse. She’s talking loudly and pointing to something. My eyes pick their way around the semi-circle, from face to face. One or two stare back, mouths open. The nurse claps and smiles. Someone groans. It sounds vaguely pornographic.

By the window, on the far side. She’s in loose trousers and an old vest and thick socks with old shoes. One sock has a trouser leg tucked into it, clumsily. She’s wearing lipstick and earrings and she’s listening to the nurse, but the way her face is set, I don’t know if it’s with interest or confusion.

I move into her line of sight, and we’re looking at each other. It takes a moment, and then her face lights up. I walk straight across the semi-circle, in front of the nurse, apologising for the interruption, to my mother. I bend down to hug her. Then I help her up, desperate to get her out of here, and she grasps my hand and I guide her out of the group to a quieter sitting area.

She doesn’t take her eyes off my face.

A thin man pushes past us, a tendril of drool connecting his mouth to the tray of his walker. Someone has soiled their pants. A white-haired woman in a blue cardigan stands before us to sing “I’m forever blowing bubbles” before another nurse shuffles her away, her little red hands gracefully waving, drowsy poppies in a foul breeze.

My mother has dementia, and it’s not whispering anymore. It’s screaming.

The smell of piss and shit and sweaty cabbage is the calling card of the dementia ward

And I have to escape the clutches of dreamy women and drooling men

As I step outside the ward to lay my forehead on the wall

And cry and cry and cry.

Now I know what the tiny lounge is for.

When I was 28 and living in France, my mother came to visit me. Even though she was born in Scotland and lived in Ireland, where I was born, she had never been to Paris. I picked her up from the airport, and after dropping her bags at the hotel we caught the metro to a strategically chosen stop. We rose on crowded escalators towards the light, and as we reached the top the Eiffel Tower slammed into view. I will never forget the look on her face.

For three days we walked and walked and drank at cafes (in one of them a waiter complimented her on her legs, bloody French men), and spent a whole day at Versailles. After two hours of trailing after her around the impossible gardens, I had to rest on a bench as she strode off to tour the palace herself, indefatigable, determined. “I’ll never be here again, darling. I have to do this.”

When she was first diagnosed, she slept and slept, waking only to be gently guided to the kitchen for tea and any food I could get into her mouth, to keep her strong, to build her up, to not let her fade away. I would turn from buttering bread to find her gone, and I would discover her in bed again, covered over, dreaming, shutting out a world of sustenance.

My mother has dementia.

I kiss her forehead as she sleeps

and as she breathes in, breathes out, her face free from pain in loose and dreamy folds

I straighten her books

iron her clothes

touch the tiny silver bird around my neck

(your father gave me that, she said, her eyes bright with exquisite memory, pressing it into my hand)

stack her shoes

and welcome the faintness of her scent

on her collars and scarves, and on her pillowcase.

My mother was a big talker. She was funny and clever and she was a beautiful singer. When my daughter was little she looked just like her, with her halo of curls. I often think, when I look back on my mother’s life, that she could have been more, so much more. I think this about many women who reach the end of their lives, who have married young, had children, followed their husbands around the house or perhaps halfway across the world, from Motherwell to Armagh to Katikati. “Och but sure I’ve had a good life,” she might say. “Look at my children. And, I stayed married. If I feel a little like there should have been more, sure that’s how we all feel. Don’t we?”

My mother cannot say these things. She can no longer talk. It doesn’t appear to bother her now.

Sometimes my heart hurts as I think of her little life, and how it is ending. Should I live my life bigger, as a tribute to her? I already am, but it doesn’t make me feel better.

As I sit by her hospital bed I recall the dementia ward patients: the drooling, shitting man, the woman who would stand so close you could feel her cobwebbed breath on her neck, the one you had to watch every time you left because she’d try to escape, the one who yelled at my father when he wouldn’t let her inside my mother’s room. But the worst ones of all were the “group activity groupies” – the ones who joined in with the nurse during activity hour, grinning and clapping and trying to sing. Sometimes grunting. My mother was present enough to know this was excruciating. She and I would look at each other with wide, wicked eyes, and I knew what she wanted to say, and then I would laugh, slowly, at her pace, careful to let her laughter be the loudest. She knew she never wanted to go there.

My mother has dementia.

I visit again, the Genghis Khan combo a family joke now.

As soon as the smell hits me I feel the tears and I bite down hard and follow my father,

My small, brave, infuriating father,

As he enters the ward for maybe the hundredth or the thousandth time,

And I think: I cannot do this but I must, because he does.

And this time my mother isn’t sitting to the side, observing, drifting.

This time she is clapping along to the music, and smiling,

and this is possibly

The very worst moment of all.

There is a strange beauty to sitting with your elderly, ill mother, particularly if your relationship has been complicated. She is broken, diminished, and I am now the one with all the power, and it turns out that all I want to do with that power is…love her.

“I’m here, Mum,” I whisper, as she drifts again in that strange ether-world that is dementia. Sometimes I tell her I love her, but sometimes that is too hard to say, because it was always hard to say. Her hand rests in mine. Eventually she pulls it away, and we are worlds apart. When the nurse calls by with afternoon tea I place a cup of tea by the bed and I blow on it so it will be cool enough for my mother to drink, when she wakes up.

My mother has dementia, but it’s quieter now.

It sleeps by her pillow. She hugs it for comfort.

She falls over and nurses find her bleeding, pliable, serene.

They strap her into her chair like a mad woman.

I leave the room when they lift her, smiling and nodding, onto the commode.

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