Chatper Four: Phantasm
On my next care shift, mum kept me up 40 hours straight.
Not maliciously – she was in pain, she needed moving around, she needed me to call the district nurse for injections since she couldn’t hold her phone herself. The terminal restlessness drove her mad.
D and my aunt came over on the third morning, knowing I was getting into a bit of a state. I’d started hallucinating my mother calling my name and my deadname, I couldn’t nod off even when they went to tend to her. In the end, I collapsed on the landing, my blanket around me like a cape.
The anger. The anger was overwhelming. The anger at him, The Man Who Is Not My Father. That moment he started doing weird things to a little girl, a gourd-y root penetrated my brain, plunged into soft pink earth only to thrive still thirty years later.
Every relationship, every interaction with an older male; every opportunity wasted by my severe depression; every promising career move cancelled by panic attacks or catatonia; every instance of revictimisation and times men took my body as if it were theirs; I blamed it all on him, a man who wasn’t suffering like my mother. He was safely in a nursing home, brain a fried egg, cheerfully sipping soup.
It wasn’t fair.
Horrible noises were coming from somewhere. They sounded like the roars of a dying animal. It was only when my brother bundled up the stairs and tried to coax me out of earshot of the newly-arrived carers, I realised the noises were coming from me.
I started hitting myself on the forehead. I started slamming my skull into the wall behind me. I started crying out for my Dad.
Wordlessly, D bundled me into his car and drove twenty minutes to our Dad’s home. He was somewhat surprised to see his daughter, shoeless, wearing only tights and vest under a draped blanket, being hustled into the living room by his son.
‘Oh,’ he said, shrugging his oily work jacket off and exhaling heavily, ‘right.’
I had to get a lift home that night. I was in no state to drive. I felt like my heart was split in two. I watched the motorway go by through tears, and mused how I’d rather have physical pain than this kind.
As I fell asleep in my own, unmade bed, I thought I heard her voice. The Mum from my childhood, with the laugh like ice cubes in a glass. I smelled her perfume; I felt her cold hands on my face.
After two nights at home, I came back to give my aunt a rest and take over care. When I arrived, my mother was too weak to talk. She did smile when I stroked her hair though.
‘Hi Mum. It’s Sarah. Or Louis.’
Normally, only my Dad is allowed to call me my deadname. I’ve extended that privilege to mum because she gets confused easily.
I oversaw the delivery of a special mattress. Two burly men piled it out of a van full of them and into the house’s hallway. Afternoon sun washed into the room when I pulled open the curtains.
‘Where is this going?’ The younger one asked. He looked like he had just wandered in from a darts tournament at the local.
‘Er, the bed’s in there but…’
He pushed open the living room door and was greeted by the view of my dying mother in her incontinence pants and baggy black shirt, kicking the duvet from her skeletal legs in a half-stupor.
‘Oof,’ he recoiled, pulling the door to.
‘…but I’m waiting for the carers to come and help me move her from the old mattress.’ I finished.
The hospice nurses arrived a minute or so later, bustled into the living room and got my mother under her duvet.
‘We’ve got your new mattress here Kay,’ the same ethereally pretty carer whom I had sobbed about the molestation to, said as she unzipped her fleece jacket. The room was boiling. ‘It’s to help you with your sore skin.’
‘I’m tired,’ my mother muttered from under the thick duvet. I watched helplessly as the two blokes unfurled the floppy skin of the new mattress; an air bed attached to a big white computer-controlled pump via thick umbilical.
The younger bloke hooked the computer on to the end of the occupied bed frame and pressed a couple of buttons, pointedly keeping his eyes at a low angle.
‘It will fully inflate in about half an hour,’ he mumbled, before he and his colleague hustled out of the house and into the fresh sunlight, heads bowed.
Did it bollocks inflate in about half an hour.
The carers started changing mum’s pants and freshening her up. She was making grumpy, tired noises. Thus far I’d done a good job of avoiding seeing my mother’s naked arse, but I got more than enough of a picture in my peripheral vision when I handed the carers a bottle of shower gel.
‘Ooo, this gel smells nice Kay,’ the younger carer said. She turned it in her plastic-gloved hand to read the label. ‘Summer rose and raspberry!’
‘Oh, lovely,’ the older carer, a woman perhaps a little younger than my mother, said while she gently dabbed mum’s hip with a flannel. ‘Is it an M and S one?’
Mum’s tumour was so big it was pushing out of her backside hole. Her coccyx was sore and enflamed, the points of her back where skin meets mattress were red and mottled.
I prodded despondently at the deflated puddle on the carpet, swallowing back the bile that had risen in my throat.
‘I don’t think it’s going up, is it.’
‘It is taking a long while,’ the older carer replied, glancing up from wiping mum’s face with a warm cloth. ‘We might have to wait till we come back later. Only they’re allowed to set it up, though,’ she added, meaning the two blokes who had brought it over, ‘So if it’s not sorted in about an hour can you give them a ring?’
They got mum comfy on the old mattress and left. While she wheezed quietly in her sleep, I thought fuck it and googled troubleshooting. It turned out whichever bloke connected the new mattress up hadn’t turned a plastic valve the lock position, causing a pressure leak.
I’ve got to say, I felt pretty damn smug as I watched the purple vinyl firm up.
With another few hours before the carers would return and mum sleeping soundly, I had a cheeky go on the new mattress myself.
Made to prevent bed sores for bedbound patients, it’s made of a load of little air cushions that inflate or deflate at intervals. The white computer pump unit offered a few modes which yes I had a go on. Ones offering a firmer feel, a more frequent rearranging of pressure, a softer feel.
I was lying there staring at the ceiling, listening to the sound of the pump whirring when I realised how utterly macabre this was. Here I was in a stuffy room that smelled of gas and Charlie body spray, my dying mother sleeping nearby, and I was getting excited about a gadget that would stop her bed sores from getting worse.
Years and years ago, I would walk into this room any time after 10pm and see my mother and The Man Who Is Not My Father, one sat on the sofa and one in an armchair, watching TV under dim light. The room would stink of alcohol. Special Brew for her, Skol Super for him.
A room that was once filled with my mother’s cackling, tipsy laughter and the bright buzz of TV shows was silent but for the whirr of a mattress pump. I could hear birds twittering outside, cars in the distance, a neighbour calling for her kids.
Hot sunshine pressed through the curtains. I watched it creep over the dusty carpet for a moment, then went back to my sofa in the dining room to chase a nap.
She was awfully grumpy when the carers came back in the evening to move her onto the new mattress.
‘Leave me alone,’ she muttered from a foetal position. ‘I’m too tired.’
‘It won’t take a minute, Kay,’ the older carer said. She had the brightest blue eyes I’ve ever seen, and kind wrinkles at her temples.
‘Leave me alone.’
‘Mum,’ I say carefully, ‘this will make your back stop hurting so much, and you’ll be able to sleep a lot better. And then I’ll be able to sleep better,’ I added wistfully. ‘With all three of us helping you we’ll get it sorted out before you know it.’
She was still grumpy but she conceded.
I rolled the commode in from the foyer, clipped the plastic flat over the bowl. The nurses got her sat up through a combo of pressing bed controls and wincing through mum’s calls of pain. She wasn’t able to move her limbs much as we shifted her gently on to the commode seat.
Good God, her legs were so thin. The skin was hanging off her thighs, her knees looked comically big in comparison. They were like the legs of a cartoon character, some short-wearing schoolkid in Beano or Dandy.
We pulled the old mattress from the metal bedframe, and all three of us struggled to get the new one on. The umbilical connecting the computerised pump to the airbed wrapped around the bed leg.
‘Do you want a freshen up while you’re here, Kay?’ The carer with the bright eyes asked while I wrapped a sheet onto the new mattress. Mum was so exhausted she could barely even nod.
As the night drew into early hours, mum started to suffer. She rolled on her back, knees up, pushing the thick duvet down over her pants. Her long nails plucked and pinched at the soft edge where the stoma bag was tucked, and where they were a little too tight around the thigh.
‘I’m in so much pain,’ she moaned.
‘I can’t give you any more of your medicine right now, it’s not been enough time.’
A syringe of oxycodone. I was allowed to give it to her by mouth every four hours, providing she hadn’t had her lorazepam sedative within the hour.
She moaned at me.
‘I don’t care.’
‘Do you want me to call the district nurse?’
We’d already talked about this; another late-night visit for pain and the district nurse was bound to prescribe her a syringe driver. That’s a type of canular that constantly administers pain relief.
‘Whatever,’ she snipped.
I recognised that tone. She did want me to call the district nurse, she didn’t want to admit to it.
I didn’t tell her that once the syringe driver goes in, it’s not going to come out until she passes. She still thought she was going to get better. With aching eyes, I grimly pressed the number into my phone.
Half an hour later a nurse rifled through boxes of medicines on the kitchen table, pulled a vial of something into a syringe and woke my mother from her fitful sleep.
‘Shall we inject this in your leg or arm?’ the nurse asked clinically.
‘Don’t care, whatever,’ my mother moaned.
Afterwards, I sat beside the bed with my hand on her bony shoulder. She wheezed, barely heard over the hum of the fan heater and the bed pump.
In that moment, I just wanted Mum. I just wanted my Mum.
I wanted that woman with the laugh like ice cubes in a glass, the crimped hair, the makeup so thick you could smell it.
I wanted that woman who strode into town in a leather jacket and stiletto heels, gripping the hand of my little brother’s pushchair while four-year-old me toddled beside. I remember the men turning as she passed, staring at her face, her breasts, the sway of her hips.
She was an icon of independent, feminine motherhood; strong and serene and smiling. She was a Madonna. An oil painting. An icon with big breasts, big brain and even bigger heart. She was painted in vibrant swipes and swirls, sounds and smells.
Now, she lay crumpled on cold-framed bed. Dry, forgotten. She was sun-bleached, faded, drained of almost everything but the bones.
I suppose The Man Who Is Not My Father did that. I don’t suppose he meant to.
But surely, a woman who had already been through the trauma of an abusive older man at such a young age, finding out the one she left her second husband for had cheated with her little daughter?
How can anyone be a holy Madonna after that? Unless Jesus is pain. Unless Jesus is coffee splattered up walls and cup fragments in carpets, or angry looks across the dinner table, or a frantic search for my pants when she woke me to wee and saw I was fully naked.
‘Where are your pants?’ She demanded, grabbing my eight-year-old shoulder and shaking it roughly. I’d been in a deep sleep and didn’t know what she was on about. She smelled of Bacardi and coke and makeup and perfume, and looked like she was about to cry.
I’d kicked my pants off during the night. They were a little too tight around the thigh.
When I pulled them from the slip between the camp bed and the wall, she stopped talking, looked abashed, yanked them up over my spindly legs and pulled me over on to the plastic potty.
She got dark towards me after the whole incident. She got snippy. She never seemed impressed with my grades or my stories. She was angry at me. She resented me for being the ‘other woman’ – an eight-year-old girl.
The day-shift district nurse appeared at about 8am. She was a kind, motherly woman who looked on me with real concern.
She brought a medium storage box from her car. Numbly, I watched her pull out some contraption, about the size of an original Game Boy, press some buttons, and clip it into a transparent plastic case. A red sticker on the side read “LOANED TO ST LEONARD’S HOSPICE.”
After the nurse left, I put the newly-installed syringe driver box on the bedside table and made sure the long canular tube wasn’t caught under the pillow. Mum started to sleep soundly.
I stood at the end of the bed as the sunlight creeped from the closed curtains, across the dusty carpet again. I must have been there ten minutes, watching her chest rise and fall, emotions and memories whirring through my body.
Then back into the dining room I went to pass out on the sofa.
11/04/2026