Dementia: A mystery story in reverse

Head Rambles Posted on by

I work as a care assistant in people’s houses, a job which earns me a lot of insight into various ailments that folk acquire in their latter years. The more frequent of these ailments, being dementia. No two clients display the same patterns of memory loss, but each client who experiences dementia does so in their own particular consistent way. If you’ve ever experienced caring for someone who has dementia, you’ll know all about the ‘back stage’ work that needs to be done… preparing memory aids, constant repetition, tidying away of triggering things, and endless patience.

I have one client in particular who is tough going. She has an extremely transient memory of about ten to fifteen seconds, so her mind constantly resets. She also has ‘anosognosia’ which means that she has no awareness of, and vehemently denies the existence of her own dementia. She ironically uses the phrase ‘completely compos mentis!’ roughly 40 times during my daily two hour visit. My work is to cook lunch for her, provide company and conversation, and complete some light housework that she’d find challenging.

It’s worth noting that all but three carers are completely refusing to do this house-call due to its intensity from a mental health point of view. This lady doesn’t believe that she needs carers, therefore assumes that we must be cleaners. She’s in her ninety-fourth year in age and is entirely nimble, so loves to follow us around ordering us to scrub on our hands and knees while she micro-manages our cleaning abilities and tells us how many spots we’ve missed.

I wonder if it wouldn’t be cathartic for me to understand her world by working through it from her point of view.

***

What time is it?

12.45pm. It’s lunchtime. I don’t feel hungry. I’d better go and see if staff are around.

There’s a woman in a uniform. And an empty bowl on a tray. I recognise her, she tells me I’ve just eaten and that I have fruit salad on the way. Jolly good.

The garden is looking well, I must go out and prune the roses. Am I hungry? I must see if anyone is here.

A full lap of the house, nobody is here! Was there someone here? There must have been, the kitchen is tidy. My diary has writing on it that isn’t mine. It says “Lunch @ 12.20pm: Soup and bread roll, fruit salad and yoghurt, green tea and ginger biscuit”. I don’t remember eating that. I’ll look in the fridge to see if I left anything there.

What time is it?

12.30pm

This floor needs to be swept. Where are my staff? It’s lunchtime and I’m hungry. What am I paying these people for?

There’s a woman in a uniform, she’s familiar but I’ve no idea what her name is. She’s drying dishes. Or is she just pretending to? I inform her that the table needs to be cleaned, she smiles and reminds me that there’s food on my table. It’s half-eaten. It must be mine, how embarrassing! Why am I in this room instead of that one? Why did I get up? I’m so hungry, where is that girl and why is she idle? I find her in my bedroom changing my sheets. I inform her that I require my lunch and she tells me that it’s already on the table, my ice-cream is melting. How rude of her! I already knew this, I think! What a very condescending tone she uses. She pleads with me not to use the oven hob in my own kitchen! How else am I going to heat up my soup?

The washing machine is running, and I didn’t put it on. I must stop it before any more electricity is wasted. I do wish people would consult me before running machinery. What time is it?

12.50pm

She’s out in the garden now, that woman with the uniform. I must go out and inform her that I require my lunch. She’s emptying the bin, at least she’s doing something useful. I fear she’s idle here with nothing to do, I’ve done all of the housework already myself. She walks indoors with me and shows me what she’s written down, food that I’ve eaten already for lunch. I see no evidence, I fear she’s lying, taking advantage of me. She’s boiling the kettle now. I inform her that I require lunch.

What time is it?

11.15am

Am I alone in the house? I find a woman in the living room, she’s using the vacuum cleaner on a floor that’s already clean. What a pointless waste of electricity! I inform her that the floor doesn’t require cleaning, that she should move the furniture back to their original positions and switch it off. I must find some work for her to do, she’s clearly wasting time looking busy. There’s a cup of tea in my hand, it must be mine but it’s cold! Why am I drinking cold tea? The woman in the uniform is carrying the vacuum cleaner away, I must tell her to do this room before she finishes. She tells me she will, once the washing machine is loaded and put on. She seems to be working hard today, that’s something.

What time is it?

12.35pm

The woman in the uniform is missing again. Idle, presumably. I find her by the washing machine, watching it empty. She says she’s waiting for it to reset, staff these days have a poor idea of how kitchen equipment works. She hasn’t made my lunch yet and I inform her of this. She tells me I’ve already eaten! How strange, I don’t remember. But true enough, I don’t feel hungry. I must have made lunch myself. I go to the fridge and find a carton of soup, I must go and put the hob on to heat it up.

What time is it?

1.35pm

I’m alone. Someone was here, what does my diary say? I’ve had lunch it seems, jolly good. Washing is drying on my line, I must have done that earlier after I made lunch. Do I have tea? Tea would be lovely, I must boil the kettle. The garden looks well, I’ll go and prune the roses in a moment. There are two cups of tea on the table, both hot! Is there someone else here? I must enlist the help of some staff to help me to keep track of this house. There are notes everywhere, none of them pertinent. Reading them might be helpful I suppose, but there should be staff here to do that. Have I eaten?

***

Maybe not so cathartic after all. I still don’t understand her world from her point of view, but I have a greater appreciation of my own mind. Except that I wonder sometimes, how would I know if I had dementia? People would tell me but then I’d forget, so I wouldn’t know. Is my world as I know it imagined, is it a memory that I’m just assuming is the present? Time appears to be linear for me, but then again it would if I had a short term memory.

Have I had lunch, even?

 

Sticky little explanatory post

Head Rambles Posted on by

Here is a small sticky post for new visitors, or visitors who haven’t visited in a while. You might notice that the writing style here has changed and that deserves explanation.

This site is now a legacy site left by the legendary Grandad who died on the 7th May 2025. His spirit lingers, and you might catch a faint waft of pipe smoke every now and then for no reason, but this is the new normal. I wouldn’t even be at all surprised if he leaves an occasional comment in some form or another.

Rather than let Headrambles stagnate, it’s now being occupied by his daughter. My name is Kate, and I’m pleased you’re here whether you’re a long time lingerer or a first time reader.

Go raibh an ghaoth go brách ag do chúl.

 

Be gentle, kiddo.

Head Rambles Posted on by

I’d cleaned the floor, a proper clean this time. Dust bunnies had been swept away and that sticky plastic residue formed by dried fluid from the feeding pump along with its sickly sweet smell had been scraped away and disinfected. Old dusty syringes used to administer liquid epilepsy medication through feeding tubes were scooped from underneath the bed and boxes of nappies and wheelchair padding were pushed back, away from curious little fingers and kicking feet. A large, brightly coloured foam wedge was plopped onto the newly cleaned floor in front of a pink toddler with little hairy explosions for pig tails. This was new. She watched and waited.

Usually, her big brother was out of sight, up high on the bed. Sometimes he was in his wheelchair which was too complicated to climb and explore. Today however, he was being lifted down and placed beside her into her world, tummy side down on the foam wedge and finally accessible. His head, neck, arms and shoulders draped over the higher end of the wedge, his nine year old feet at the lower end where his stubby little toes flexed and un-flexed randomly. The idea of this wedge was to encourage neck strengthening, and his incentive to lift his big scruffy head today was a toddler armed with brightly coloured musical instruments and percussive toys. We were about to become a loud little room.

I engaged the little girl with play, encouraged her to rattle and bash her toys and made a raucous music with her to the amusement of her big brother who lifted his head and grinned and laughed, his lips produced long strings of drool which stretched to the floor and got smeared around by his chubby sweeping fingers. He made happy nine year old sounds, but had no capacity to use words or ask for more of one thing and less of another. He was happy just to exist in that moment, his head reaching up and flopping down depending on his strength reserves. We had roughly twenty minutes of this activity before his neck muscles would run out of power causing his head to flop permanently downwards in exhaustion.

Soon, the noise making capacity of the loud little toys lost their power and the toddler’s curiosity turned to her brother, whom she watched with a tilted head. She babbled sing song words to him and waited for him to reply. When she paused, his nonsense babbling stopped too and they remained frozen together, both waiting for interaction. The toddler tried again, tried leading him into conversation and became more visibly confused that these normal methods of interaction weren’t working. She took his slobbery hand in hers and opened out his fingers and placed a rattle in his hand which he held loosely, unable to grasp with his lack of motor control. She took another rattle and bashed it off the floor loudly, showing him how to operate it. He squealed loudly with delight at this sound and waved his arms about, the rattle he loosely held went skittering across the floor.

The toddler grew concerned at this point. She got up, and poked her brother in the ear. Then she stuck her finger up his nose. Her brother winced, and sneezed, and flopped his head down to rest for a moment. He felt the weight of the toddler as she climbed onto his squishy bottom padded with a moderately soaked nappy and began to drum on his back, soft at first, then harder and harder.

“No no, be gentle, kiddo.”

She climbed down and resumed her place in front of her brother and poked him again, becoming cross with him now. She shouted in indignation and lined toys up in front of him. She showed them to him one by one, and told him it was his turn. He stretched and flopped, stretched and flopped, but didn’t interact with her and didn’t reply. A tantrum started to build and I watched, unsure as to how to handle the incoming emotional storm. Instead of a tempest though, the storm subsided and the toddler relaxed into a pose of frustrated acceptance. On her face grew an expression that I’d never seen on a child’s face before. She was learning that it wasn’t that her brother didn’t want to play with her, but that he couldn’t. She was finding acceptance in the fact that she had a useless brother. She cried the saddest tears I’d ever seen and my heart broke for her.

But then she learned over time.

She learned about charitable love, love that wouldn’t be returned, love just for the sake of love. And it wasn’t useless at all. She’d sit beside him as she grew and sing the new songs she’d practiced at school and read stories to him from her books. She blew bubbles for him to gaze and shout at and pushed teddy bears underneath his limp arms to cuddle. She’d hop up on his lap on his wheelchair when he’d come home off the school bus and ride into the house and help me take off his shoes and ask him about his day even though she knew he’d never reply.

That’s the gift that a disabled kid brings into a family. I’ve seen it in other families, the capacity for the more able-bodied neuro-typical siblings to show an otherworldly level of empathy to other members of humankind, and a sage understanding of how the world works and the happiness that can be found in the littlest of things. It can’t be found in a Disney Movie or taught in a classroom, it’s a beautiful understanding that grows from the ashes of burnt expectations.

 

The blank slate

Head Rambles Posted on by

I used to have my own blog, years ago. Dad used to give it props and send readers my way and it gained momentum and became fun for a while. I even won an award, once. I think that was my downfall, I began to feel pressure to write content for other people’s approval instead of for the sake of my own joy. The blog became an empty space, rarely updated, all motivation lost.

Then, after a journey into sobriety after decades of mistreating myself, creativity came back and I felt the craving to write again so I began a new blog, this time not hosted by dad and not shared to anybody I knew at first. This gave me freedom to write whatever I wanted, but funnily enough the content was dull and not up to potential. I shared the site’s address with dad after a while and he’d call me up, shocked at what I’d written or telling me he was worried about me. It wasn’t worth it, so I shut that blog down too.

Now here I am again, with an opportunity to write. I wonder if anything will happen, or if it becomes another neglected pet like a fairground goldfish which loses its shine once the weeks wear away. Dad used to tell me to write about the clients I work with. I’m a care assistant so the material is certainly there, like the lady with dementia who keeps giving out to me for repeating myself or the girl with cerebral palsy who curses like a sailor or the gentleman who lives in the 17th century house whom I’m pretty sure is a ghost.

I’d love to write a book, a horror story which incorporates some Irish folklore and dark humour with inappropriate exaggerations as is the storytelling way in Ireland. I want to write it about the Hellfire Club. This is an old ruin at the top of Montpelier Hill in the Dublin mountains, built by a chap named William ‘Speaker’ Connolly in the 1700s and taken over by an extremely amoral man named Richard Parsons who was known for his shady love for the dark arts and hedonism. A faery fort which originally existed on the site was used to build parts of this building, thus cursing it for eternity. People would go there to gorge on booze and sex and murderous black magic, servants and animals were sacrificed in horrific rituals and stories tell of visits from the devil himself to join the craic. It’s a real place, with a real history and is right up there on the list of Ireland’s most haunted places.

It’s always fascinated me, the Hellfire Club. My dog hates it. She won’t go into certain parts of that ruin and likes to sit and stare at a blank part of the wall in one of the upstairs rooms and bark at it nervously. It’s a nice place to bring children for picnics, but I’d love to visit it at night time, alone. I’m sure I could make a story out of it, involving a love-triangle, a few restless spirits and an upturned sod.

But life is busy and there aren’t enough hours in the day for now, the restless souls I deal with now are very much alive and in need of feeding and the bills won’t pay themselves and I have a lot of repeating to do.