a perch in the square

The thunderstorms they promised have yet to materialise. Instead, a giant grey lid has drawn low over the city, holding down a pressurised heat that makes you long for clear skies and a clean breeze, the sea, and a rock to dive from.

I’m visiting Andrew, a patient whose history of alcohol abuse and mental health problems means he needs to be a double-up. I’ve arranged to meet Sandy, one of the nurses, at the address. As well as my obs bag and folder I’m carrying a perching stool, because the notes say Andrew injured himself recently and needs something to sit on when he washes. I’m so hot now I’m tempted to stop and sit on it myself, right here in the street, and just wave for people to go round.

Andrew lives on a new estate, somewhere I’ve been before but only to the outer houses. I’ve heard the private parking arrangements can be fraught, so I take the safest option of leaving my car out on the street and walking through. Rookie error. The estate turns out to be the architectural equivalent of a cavity – a small entrance roadside that quickly opens out into a wide, faux village green, red brick Lego houses on four sides and cul-de-sac arms windmilling off at the corners. Whether it’s the heat, my innate stupidity, the evil planners, or all three, but I cannot figure out the way the numbers run. I take the south side of the green; of course, the numbers are completely wrong. I cut across the green, but in the far corner they’re even lower. I have a sudden, terrible image of myself, discovered years later by maintenance staff when they strim around some overgrown bins, my skeleton sprawled on the rusty perching stool, a squawking crow gothically and ironically perched on me. The maintenance staff taking a picture, uploading it. People commenting yeah right how fake.

Eventually, though, more through luck than judgement, I find myself standing outside the entrance to Andrew’s place. There’s an intercom with half a dozen numbers, high numbers at the bottom, low numbers at the top. Andrew’s buzzer is at the bottom, which means, I’d guess, he lives on the top floor. Great. I put my stuff down, sit on the stool, and wait.

Sandy rings. She’s lost. The satnav has taken her somewhere else entirely. I try to give her directions but it’s only then I realise how little I understand the area myself. We spend five minutes trying to establish which way she’s facing, whether we’re talking about the same convenience store, the same school. I can’t remember whether the entrance to the estate is opposite a boarded-up pub or a church. I’ve walked too far into the estate to walk back onto the road and wave as she drives past. She says don’t worry she’ll drive around a bit and see what happens. I say fine, good luck, see you later.

Take a breath. Take stock.

A large white van enters the square from the far corner, drives round the opposite side and stops in the road facing me. It idles there a second, then a guy in a baseball cap and a face as red as his shirt leaps out, fluorescent tabard wings flapping behind him. He strides round the front of the van leaving his door wide open, throws open the side of the van, grabs out a parcel, hurdles a small flower border with his index finger already extended to press the intercom so forcefully he almost puts it through the wall. He stands there, breathing heavily, looking around. He sees me sitting there and seems to straighten. After a second he nods once, sharply, then spins the parcel in his hand like Billy the Kid. The door opens. Even before the woman has said hello the guy has chucked the parcel at her. She drops it and apologises, but he’s already vaulted back over the border, slammed the side door shut, slid arse-first across the bonnet, thrown himself into the driver’s seat and set off, only closing the driver’s door when he’s made ten yards. The woman slowly retreats back inside. The square falls silent again.

A woman further down on the left comes outside, carrying a folded camping chair in her left hand, a glass of drink in her right, a rolled magazine under the same arm. She drops the chair down onto the scrap of grass outside the main door, pulls the magazine from under her arm, sets the magazine and the drink down, then shakes out the chair, kicking the feet out securely with a crocked foot. When she sees me I wave. She nods back, but in a non-committal way, then carries on setting herself up – a little more self-consciously, it seems to me – occasionally glancing my way to try to figure out quite what I’m doing over here, perched on my perching stool. She must realise I’m an official visitor, though? Black trousers, black shoes, a white polo shirt (the hot weather allowance instead of a tunic), an ID badge hanging from my belt. But then – if I’m visiting, why am I sitting outside the house and not going in? There’s no way of miming that I’m waiting for a colleague, and I’m certainly not going over there to explain. Because what if she isn’t wondering what I’m doing? Maybe she’s just happy to see someone else sitting down in the square. You can overthink these things.

My phone rings. Sandy has found the entrance and wants to know whether to drive in or not. I tell her that I didn’t drive in but wished I had. I give her directions to follow once she’s reached the square.
‘This is exciting,’ she says. ‘It’s like in the films when the pilot has a heart attack and the control tower tells a passenger how to fly the plane.’
I agree with her, although when I hang up I try to remember a film where that happened and can’t think of one.

A few minutes pass, more than you’d need to drive round. I wonder whether to ring again.

I look across at the woman again. When she sees me she raises her glass in a cheers way. I smile and nod and mime how hot it is by wiping my forehead and flicking my hand off to the side. But then I wonder if she interprets that as me saying how hard I’m working when I’m patently not.

Sandy pulls up in her enormous car. Watching her drive front first into the parking space is like watching a tanker super-cautiously nudging into dock. After a while she struggles out, desperate to avoid dinking the neighbouring car with her door, which she only manages by using her knuckles as a cushion.

‘I forgot to get the air con gassed-up when it went in last week so basically I am fully cooked now!’ she says. ‘Anyway. Here I am. I made it.’

I fetch the key from the key safe and we struggle up the stairs to Andrew’s flat. We stand in the doorway, puffing and blowing and staring inside.

He’s lying prone on a low sofa, covered in a fleece. The room is unbearably hot, the radiators on, the windows closed. A tropical greenhouse would be several degrees cooler. Sandy looks at me, widening her eyes over the top of her mask, her forehead already glistening with sweat.
‘Andrew?’ she says. ‘Would you mind if we open a window please?’
‘I’d rather you didn’t,’ he says, slowly turning his jaundiced face to the side and giving us both a sad, heavy look. ‘I like it warm.’

hat

It’s so hot my shoes feel tacky, like I’m puddling footprints of molten plastic as I go. I’m visiting a patient in a bunkerish, red-brick block called The Apples. Quite why they called it The Apples is anyone’s guess. Maybe there was an orchard here once. Maybe they tried a lot of other names, nothing fit, so they asked a five year old. Maybe they misunderstood the architect, who actually said ‘Thermopylae’ over the phone. Whatever the reason, the block is just about as far away from apples as it’s possible to be. Unless you count supermarkets.

There’s an elderly woman dragging a wheeled shopping bag up the path ahead of me, her long white hair reflecting the sunlight so powerfully it’s like she’s wearing a bridal veil of spun silver.
‘Where’s your hat?’ I say to her as I gradually overtake her.
She stops, turns and frowns.
‘Don’t believe in ‘em,’ she says. Then carries on.
When we get to the main door I tell her I’ll buzz my patient to let me in, but her frown deepens so much it meets her chin. She swipes her fob in front of the pad.
‘Let me get that for you,’ I say, holding the door.
She drags her shopping bag into the shady hallway.
‘I’m using the lift,’ she says, and nods for me to take the stairs.

Luckily, Mr Felstrom is on the first floor. I wonder if he’ll be confused, me knocking on his flat door without having buzzed the intercom first. There’s no sound from within the flat, so I’m surprised when the door suddenly opens and he’s standing there, looking as if he’s been waiting for me there ever since I rang to arrange the visit a half hour ago. He looks extraordinary – comprehensively buttoned into a tartan shirt, his bristly hair sticking straight up, like he showered, then dried himself by standing over a vent.

Mr Felstrom’s flat is as small and ruthlessly organised as the cabin on a ship, everything aligned with everything else, even the piles of letters on the table in size order, the letter opener parallel, a list of medications surrounded by a display of equidistant pill packets. Even the fridge magnets are all in a grid. I begin to feel as if I’ve been uploaded into a photograph, just like the one on the calendar – a young woman standing next to him under a tree – blu-tacked to the kitchen door. The calendar is covered with carefully written dates and an array of post-its with important messages.

‘My daughter’s coming round later to take me to the park,’ he says, after I’ve finished the examination and I’m writing up the notes.
‘That’s nice! A lovely day for it. If you wear a hat. Which park are you going to?’
‘You know,’ he says.
‘Which?’
‘The long one.’
‘Like one of those stately home kinda parks?’
‘Lots of trees.’
‘Sounds amazing.’
I try naming a local park.
‘No,’ he says.
I try to think of a couple of big parks out of town.
He shakes his head.
‘How are you getting there?’ I say, hoping that might shed some light.
‘On the bus,’ he says.
‘Fantastic! Maybe you could sit on the top deck and get a great view.’
‘My daughter’s taking me.’
‘Lovely.’

He stares at me, blinking rapidly but otherwise completely still. And it’s something about the way he speaks and looks, combined with the stultifying heat in the room, the hectic geometry of the place, the grid of his shirt, that starts to make me feel a little dizzy.
Bus? Park? Daughter?
‘But don’t forget to wear a hat,’ I say.
Hat?

stressful deliveries

Ken has been sent home to die. It says so in the discharge summary, once you get past the medical terminology, acronyms and abbreviations. And if the End of Life description in the narrative isn’t clear enough, they’ve packed him a bag of ‘Just in Case’ medications, or JICs, the medicines the District Nurses will administer to ease the symptoms of Ken’s death. So really there’s no question about it.

It’s worrying that there doesn’t seem to be a ReSPECT form, though. (ReSPECT being yet another acronym, standing for: Recommended Summary Plan for Emergency Care and Treatment). The form clarifies the treatment expectations for a patient, including when they’re approaching end of life. The form gets filled in after a frank conversation with the patient and their family, exploring what they want to happen, what’s important to them, how and where they want to be treated, especially when things deteriorate. Without it, you’re left tiptoeing round the edges of an emotionally fraught subject, to no-one’s benefit, not least the patient. Good End of Life care needs clarity, honesty, stability and forward planning. Without these things it often deteriorates into last-minute fixes, stressful appeals, unnecessary hospital admissions.

In this case, not only is there no ReSPECT form, but neither Ken nor his son Simon seem to have the least clue what’s going on. And if they have been told, the best you could say was that it hadn’t sunk in.

‘What are these?’ says Simon, shuffling through the JIC boxes like a poker player with a bad hand. ‘What are they for, then?’
‘Those? They’re …erm… for a little bit further on. If things change. The District Nurses will talk to you about those. They’re the ones who’ll be giving them, so you don’t have to worry. I’d put them in a cupboard out of the way or something.’
‘Nah. I’ll put them up here,’ he says, stacking them up in the middle of the mantelpiece. A grim talking point. ‘So what d’you need to know? Only I’ve gotta get back…’

You’d know they were father and son without being told. It’s not just they’re both bald, with the same roughly-chiselled head, the same pinched nose and beak-like mouth. It’s something else they share, a startled watchfulness. But if they have the same essential character, Ken is the one you can see is mortally ill. His lips are dry, his eyes sunken, and there’s a dull, liverish pallor to his skin, like someone tried to sculpt a rough copy of the younger man in clay before it dried out.

Encouragingly, the house is roomy and clear, with plenty of space to make the necessary adaptations. There’s a large room immediately adjoining the living room that would be perfect for a hospital bed. All it needs is to clear away the card table and six chairs currently taking up the middle.
‘No. No way,’ says Simon, folding his arms. ‘He won’t want that. He’s got his own bed upstairs.’
‘The thing is, though, Simon, as your Dad’s illness progresses, he’s going to find it harder to use the stair lift. It’ll be much better and safer for him to stay on one level. Also, the hospital bed means he can be cared for more effectively than on his own bed. It goes up and down to the right height, so it’s easier for the carers to do what they need to do. And it’s got a pressure mattress to help stop him getting pressure ulcers.’
‘No,’ says Simon. ‘He won’t have it. He wants to have his friends round to play cards. How’re they going to do that with a bloody great bed in the way?’
‘They’ll think of something.’
‘No. It’s not going to happen. We’ll leave things as they are for the time being, thank you very much.’
He takes me upstairs to look at his Dad’s current bed. It’s a standard divan, standard height. Once Ken lands in it, the risk is he’ll be stuck there and then the carers will struggle to do personal care and change his pads in a safe way.

It’s a common problem. For each patient, of course, their situation is unique, a once in a lifetime event. They can only think about how it affects them; everything else is secondary. For the carers, though, it’s part of their working day. They see a lot of end of life patients. If the carers are to avoid a back injury, they need to be able to adjust the bed to a sensible working height – not to mention the facility to change the patient’s position, to sit them up or lie them flat as required. But it’s awkward to insist on this without making the conversation sound more about the carers than the patient. The trick is to have these discussions before the patient is discharged home.

As a nursing assistant I don’t feel I have the seniority to push the subject with Ken and Simon. Instead I make a mental note to escalate things when I get back to the office.

‘I can’t stay long,’ says Simon, showing me back downstairs. ‘I’ve got to get back to work.’
‘Oh? What do you do?’
‘I’m a delivery driver for a supermarket,’ he says.
‘How’s that going?’
‘Terrible!’ he says. ‘I thought it’d be a breeze but it isn’t.’
‘Why? What’s the problem?’
‘They know everything about you. They know exactly how fast you’re driving, how hard you step on the brakes. They know how fast you go round a roundabout. It’s all monitored by a computer, every second of the day. And if you make the slightest mistake they know about it. If you accelerate just a few miles an hour over the odds, ‘cos maybe someone’s coming up too fast, or maybe you’re overtaking and need to get past, or maybe you’re waiting for a gap to get out and you have to pull away a bit sharpish, because otherwise you’ll be waiting there till Christmas, and you’ve got all these jokers flashing their lights and leaning out of their windows calling you every name under the sun… I don’t know. I don’t think I’ll do it much longer. But the trouble is, there’s not much around. What else am I going to do?’
‘I don’t know. It’s difficult.’
‘Difficult? It’s impossible! The whole day you’re monitored. Like they’re sitting right there in the cab. With a clipboard. Saying Ah-hah!…TICK! …. Yep – Er Hmmm … TICK!… every time you do something they don’t like. And for what? Minimum wage? I don’t think so.’

He stares at me, unblinking, hyperattentive, a holographic version of the onboard computer.
‘Why can’t people just be reasonable?’ he says.
And I tell him I don’t know, but wouldn’t it be great if they were.

*

Later that week Ken deteriorates, and there’s the inevitable scramble to set up all those things it was obvious he needed from the start.
‘Where did they put the bed? I ask the carer.
‘Where the card table was,’ she says. ‘Which is great, ‘cos there’s plenty of room…’

don’t mention the tattoo

Even without the diagnosis from the discharge summary, you’d know Charles was at the end of his life. He’s lying on his side, propped up on pillows, one leg hanging out of the bed, his face mottled and ghastly, his lips puce, his limbs puffy with fluid, a horrible rasping sound shifting deep in his chest. I hardly need put a hand on him to know how bad he is, but I do – not because I’ll be calling an ambulance, but because I might need to get one of the palliative team out, and it’s good to have the leverage.

His wife Maureen watches from behind me, leaning with her arms folded on the bedroom door.
‘Listen to the nurse,’ she says, her arms folded. ‘If you won’t listen to me.’
‘Ah! Woman!’ says Charles.

The District Nurses are case managing. They’ve only referred to us for some bridging care, and to see if we can persuade him to agree to some changes in the set-up at home. There’s a perfectly good hospital bed in the front room, but Charles refuses to use it. He wants to die in his own bed, even though it makes caring for him extremely difficult. There’s no room to move about, the bed’s too low, and Maureen has been struggling. They’ve had the ambulance out twice to get him up when he’s fallen. A patient his size? In this condition? In this tiny room? I can’t imagine how they did it.

‘How about we help you to the bed next door?’ I say. ‘It’ll be much better for you. It’s got a special mattress so you’ll be less likely to get pressure sores, it goes up and down to make it easier on the carers, and you’ll be in with the TV so you can watch the football.’
He snorts.
‘Football!’ he says . ‘There’s not much football where I’m going.’
‘No. The ball’d catch fire,’ says Maureen.
‘Yeah?’ he gasps, struggling to sit up. ‘Well at least I can pass your respects on to your mam.’
‘There now,’ says Maureen. ‘Isn’t that charming?’
‘Ah!’ says Charles.
‘So will you come with us into the front room?’
‘No I will not.’
‘Why not?’
‘I don’t want to.’
‘Take him. I’m done,’ says Maureen, and hurries away.

I lean back against the wall and sigh.
He opens one eye and glares at me.
‘Don’t let me keep you,’ he says.
‘The thing is, Charles…’
‘What’s the thing, now?’
‘The thing is – I respect your decision to stay in your own bed.’
‘Do you? Well that’s big o’you.’
‘But what about Maureen? You’ve got to think about her, too. And the carers. As your condition worsens you’ll need looking after in bed, and this one’s just not up to the job. They’ll hurt themselves trying to change your pads and whatnot. It’s too low, and there’s hardly room to swing a cat.’
‘Don’t be taking to me about no cats.’
‘And anyway, Charles – next door’s so much nicer. You’ve got that lovely big window you can look out. You’ve got the TV.’
‘No,’ he says. ‘I’m staying put.’
‘The other thing is – that hospital bed is so flexible. You can sleep more upright, and that’ll help your breathing. ‘
‘I’m staying where I am, thank you.’

My colleague has been on the phone to the DNs. He comes back in and says they’ll be visiting to review things later in the afternoon.
‘Good!’ I say to Charles. ‘That’s brilliant! How about we get you next door onto the hospital bed, so you’re ready for them.’
‘You don’t give up, do you?’
‘I know. I’m really annoying.’
‘I wouldn’t say annoying. I’d say something far worse.’
‘What d’you think, though, Charles? Shall we give it a shot?’
‘Give what a shot?’
‘Going next door onto the bed.’
‘How’m I going to get there, then?’
‘We’ll use this bottom sheet to slide you over to the other side of the bed. Then we’ll help you sit up, and when you’re strong enough we’ll help you stand and scooch over onto the wheeled commode. Then we’ll wheel you through to the living room, and do it all in reverse.’
‘Just like that.’
‘Just like that.’
‘And if I do it you’ll shut up about it.’
‘Promise.’
He sighs and shakes his head.
‘Give me five minutes,’ he says.
‘No worries.’
Maureen reappears in the doorway.
‘Is he going then?’ she says.
‘He is, yes.’
‘Oh my God,’ she says. ‘It must be the uniform.’

Charles has softened back onto the pillows.
There’s a faint outline of an old tattoo on his forearm. It looks like the number ten.
‘What’s that?’ I say, tapping it. ‘The number ten. Why’d you get that on your arm?’
He raises his arm, blearily stares at it, then plops it back down again.
‘That’s not a number ten,’ he says. ‘That’s a heart with a scroll underneath.’
‘Oh! Yes! I see it now! And what does it say on the scroll?’
Phyllis,’ says Maureen. ‘And no – it’s not his mother.’

peanut takes the fifth

The estate is so perfect it hardly seems real. A collection of the kind of houses you might see on a Monopoly board, except red not green, and made of wood not plastic. I imagine a giant hand reaching down from the sky and carefully setting each one in place, followed by the bushes, the young trees, a cute little twist of driveway. Kids playing in the street.
One of the kids cycles up to me as I park in the drive.
‘Hello’ he says, with a blank expression.
‘Oh – hello! Alright?’
He doesn’t say anything, but leans on the handlebars of his bike and watches as I take my bags out and shut the door.
‘Well… have a nice day!’ he says, satisfied everything seems to be in order. Then jumps up on his pedals and sprints away.
‘You too!’ I call after him.

I’d phoned Maud earlier to say I was coming.
‘The front door’ll be open’ she’d said. ‘Ring the bell, come into the hallway, but don’t open the inner door till I say. Only I’ve got the dog and he’ll run out.’

There are half a dozen wooden steps up to a boxy porch. I ring the bell, then open the door and step inside.
‘Just a minute!’ shouts Maud above the excited barking of a small dog. I close the main door behind me and wait. The moment Maud opens the inner door, the dog hurls itself through the gap, stretches its paws up my leg and stares at me with crazy eyes.
‘Peanut!’ says Maud.

Peanut is about the size of a Jack Russell, but one that’s been cut-and-shut with a Yorkie or a Capybara or something. It has wild, overgrown eyes and a bottom jaw cocked to the side with the tiny teeth showing, giving it a vexed kind of look, the kind of look you might see on the face of an ornery town sheriff who can’t decide whether to shoot you or make you deputy.
‘He’s so cute!’ I say, reaching down to pet his head.
Peanut licks my fingers then jumps back down and hurtles away back into the house. Maud trudges after him, waving for me to follow.

Maud’s front room is as cosy as any I’ve seen, the large patio window overlooking a lush and flowery garden.
‘Take a seat!’ says Maud, throwing herself down into her mission control recliner. ‘I don’t mind where.’
‘That’s the second dog I’ve met called Peanut’ I tell her, putting my bag down.
‘What was the other one like?’ she says. ‘Was that a pest, too?’
‘Actually…’
‘I didn’t name him,’ she says. ‘He was like that when I adopted him. I wanted an older dog. I said to them I said – I’m eighty-six! What do I want with a young dog? But they didn’t have anyone else and he’s only little so I suppose they figured he’d get enough exercise out in the garden. Plus I have a woman come over every other day to take him over the racecourse, and that seems to work.’

I picture Peanut racing alongside the horses. When they jump over the hedges, he dives straight through…

‘…mind you, it’s company,’ she says. ‘I wouldn’t be without a dog. It makes a place, d’you know what I mean?’
‘I do,’ I say. ‘We’ve got two lurchers.’
I show her the pictures I’ve got on my phone.
‘Oh – now!’ she says. ‘Look at that!’
She doesn’t stop long over the pictures, though. She immediately struggles back up again and takes me over to a wall that’s covered in framed pictures of all the dogs she’s ever had, which is quite a number. There’s one she seems to avoid, though – a Bichon Frise in soft focus, reclining on a pink bed, looking as pampered and comfortable as Barbara Cartland. Eventually she comes to it, though.
‘And that’s Billie,’ she says, reaching out to stroke the frame. ‘Billie was just.. I don’t know… Billie!’

Meanwhile, Peanut has taken the opportunity to climb headfirst into my bag, pedaling his back legs furiously in the air to push himself further in. I reach down and gently lift him out again.
‘Tempting as it is to kidnap you,’ I say, setting him upright on the carpet where he stands panting indignantly.
‘You’d be welcome,’ says Maud. ‘Yesterday he ate two marigolds.’
‘The gloves?’
‘No – the flowers!’ she says. ‘He came running in with them sticking out of his mouth, then chewed them down before I could pull ‘em out.’
‘Oh Peanut!’ I say.
He looks up at me, his jaw synched to the left, his bottom teeth poking up, as if he knows exactly what Maud’s talking about but has decided to take the fifth.

wherever there is

The bell activates the dogs. I stand back from the door and listen to what sounds like a bear fighting a pack of wolves. If it is a bear, though, it has learned our city ways, how to curse and swear and slam a gate. A minute later and a paw materialises behind the frosty glass to flip off the latch.

The bear turns out to be Jon, a frazzled middle-aged man in a Motorhead t-shirt, his long, wild hair thinning at the top; the wolves a couple of miniature schnauzers who glare and rage at me from behind a baby gate.

‘Sorry about that!’ he says, pushing the hair back from his face. ‘Come on in! Just ignore them.’

I go past the growls through to a narrow front room where Jon’s wife, June is sitting in an armchair, dozing, her face propped on the flat of her hand. The room is dominated by a hospital bed that must have only landed there recently, everything else pushed to the side to make space, things piled quickly on top of each other.
‘It’s the nurse,’ says Jon, gently touching her shoulder.
She rouses blurrily as he helps her to sit up.

The moment I’ve finished saying hello and explaining why I’ve come, Jon throws himself into a long and frantic description of everything that’s happened recently. It’s a monologue that’s as traumatised as the room, big things mixed in with small, a jumble of information that’s hard to get straight. Jon scarcely seems to breathe as he talks, everything spilling out in a rush. The best I can do is nod and say Yes or Right or I see, letting him vent.

These are the closing hours of a fiercely hot day – the last of a run of hot days. Outside the sky is thickening with storm clouds, the air oppressively close. The windows in the little front room are all open, but nothing moves except the traffic outside and an occasional shout from the street. The net curtains hang straight down.

There’s a cushion on the back of the sofa behind me – a photograph of a schnauzer in close-up, eyes wide, mouth open.

I start to sweat.

I can’t gauge how much Jon is accepting of June’s recent End of Life diagnosis. The job was given to me when I was out and about, an urgent visit to assess the home environment and give guidance to the carers on what’s safe or not. I couldn’t figure out from the attachments exactly how much had been explicitly stated to June and Jon, and it was too late now to ring the other agencies involved for advice. All of the falls and manual handling struggles Jon describes could be put down to June’s declining health. But maybe as a family they’ve opted to do as much as they can to normalise the situation, which would be completely understandable. So I find myself trying to do three things at once: piecing together a timeline of events from everything Jon’s describing; trying to figure out if any of this shows they know and have come to terms with the diagnosis, and worrying how I’m going to talk about safe manual handling for the carers without acknowledging the most significant detail.

June slaps the top of her head and groans.
Jon goes over to her to comfort her.
‘Don’t worry, love,’ he says. ‘Don’t worry. We’ll get there – wherever there is.’

prawn’s gambit

Gerry is on the floor when we arrive to do the assessment. He’d been there all night, and although he hasn’t hurt himself, he’s in pretty poor shape. We clean him up as best we can, then call an ambulance to take him to hospital. There’ll be a two hour wait, the call taker says. Exceptionally high demand. Like it’s ever any different.

In the meantime we try different ways to get Gerry off the floor, positioning chairs, encouraging him to roll over into an all-fours position that he might be able to progress into a kneel then a stand. But although he tries his best he’s just too weak; the chronic pain in his arm from a recent fracture means he’s got limited upper body strength to call on, and his legs won’t support him even if we physically boosted him up. In the end we admit defeat, and decide the best we can do is surround him with cushions and pillows, ply him with water and biscuits, and wait for the paramedics.

My colleague has to go to another call; I settle down on a kitchen chair to wait with Gerry.

Gerry has been smoking forty a day for the best part of thirty years, with the result that the whole flat – from the curtains to the carpets, the doors to the clock on the wall – is coated with a grungy patina of nicotine. It’s a hot day, so I open the windows for some fresh air. Even the flies that blunder in haul on the brakes and head straight back out again.

‘How long have you lived here, Gerry?’ I ask him, sitting back down on the chair.
‘Ooh – a long, long while. When they were built, pretty much.’
And it’s no doubt a consequence of sitting here with him for so long, but I imagine the builders laying the first course of bricks around us, Gerry on the floor, me on my chair, Gerry thoughtfully stroking his enormous Father Christmas beard, me checking my fob watch.

There’s a bookcase just behind him, filled with books on chess.
‘You like chess, then?’ I say, artlessly.
‘Oh yes!’ he says. ‘Yes, yes!’
‘When did you learn?’
‘When I was at Grammar school. I saw some kids playing and I thought hmm – what’s that? So I got a book out of the library. Then another book. Then another one. And I gradually taught myself all there was to know. I played in local leagues, bigger competitions. I was never international, but I got pretty good.’
‘I know how to play,’ I say. ‘Basic stuff. I don’t have any tactics, any strategies. You know? The prawn’s gambit and all that?’
‘Prawn’s gambit?’
‘I just made it up.’
‘Hmm – the prawn’s gambit,’ he says, stroking his beard. ‘You might have something…’
‘My problem is I just throw everything forward and hope for the best.’
‘Hmm,’ he says. ‘Yes.’
‘I don’t know who even invented chess. I know it’s pretty old. I remember seeing the Lewis chess pieces in the British Museum once. They were cute.’
‘There are lots of myths around the invention of it,’ he says. ‘My favourite is the one about the Indian king.’
‘What’s that?’
‘Well you see, a long time ago there was this great king. And he was bored with all the usual games, so he put out a proclamation. Invent a new game and the winner gets as much gold and silver as they desire.’
‘And the losers get killed.’
‘Quite possibly. Anyway, lots of people came forward, but the best was a wise old mathematician who offered the king chess. He told him he’d based it on court life, with soldiers, bishops, knights and so on. The mathematician taught the king how to play, and through playing the King learned his first important lesson, which is that everyone under his command has a role to play, from the most insignificant pawn to the grandest queen. And the king was very struck with this game, and told the mathematician that he’d won, and could help himself to as much gold and silver from the Treasury as he liked. But the mathematician said no thank you – what I’ll have is one grain of wheat on the first square of the chess board, doubled on the second, then again on the third, all the way to the last of the sixty-four squares. And although the king was put out, because he didn’t think a few grains of wheat were a satisfactory prize, he agreed. But of course he soon realised his mistake, because the number of wheat grains grew exponentially, until he owed him more wheat than his kingdom could ever produce. So that was the king’s second lesson – never underestimate the power of mathematics.’
‘Then what happened?’
‘I don’t know. He probably had him killed. Life’s not really like chess, is it?’

canned

There’s a sound like someone managing two sharp turns of a rusty bolt, then a cat walks in – or rather, rocks from side to side, easing its hips.

The cat is ancient, its fur clumpy and all over the place, like someone tossed a tiny black and white throw in the washing machine then slung it over some sticks to dry. The cat’s eyes burn fiercely, fixing it to this life. I imagine if it blinked, the whole thing would simply vanish in one, final, dusty meow, and the little black and white throw would gently settle onto the rug.

‘Twenty three’ says Agnes, pre-empting the obvious question.
‘Wow! Twenty-three! We had a cat that was nineteen and I thought THAT was old. But twenty-three…’
The cat stares at me: Say twenty-three again – I dare you – I double-dare you… I hear in my head.
‘Where did you get him?’
‘The cemetery.’
‘The cemetery?’
‘He was about one they reckon, with his head caught in a can. The fire brigade had to snip it off. It was in the papers. When I read about it I went down to the shelter. He was furious with everyone of course. But I spent some time there, sitting with him, just talking about this and that. And he seemed to come round. And when I asked if I could adopt him they said yes! And here we are!’
‘So what did you call him?’
‘Guess,’ she says.
‘I don’t know. Lucky?’
She shakes her head.
‘Snippy? Beans?’
‘It was a tin of cat food. I don’t suppose he’d have tried so hard if it was an old tin of beans.’
‘No. You’re probably right. I don’t know, then. I give up.’
‘Tintin!’
‘Of course.’
‘Actually I didn’t call him Tintin. The girls at the centre did. But it seemed to stick.’
‘Like the can.’
Agnes doesn’t respond to that; Tintin certainly doesn’t.
‘YOU’RE SITTING IN MY SPOT!’ shouts Agnes suddenly leaning forward. ‘THAT’S WHERE I LIKE TO JUMP UP!’
She sounds so cross I actually flinch. For a second I think she means I’ve inadvertently taken her place on the sofa. But – jump up? The last time Agnes did any jumping up was maybe the Marquee Club in 1962.
‘That’s what Tintin’s thinking,’ she says, relaxing back again. ‘But don’t let him bully you. Now then – where were we…?’

Billy’s nest

I’m waiting for Georgiou, the physiotherapist. It’s a smart street, not at all the place you’d expect to find a hostel like this – not because the effects of alcohol and drugs aren’t universal, but because the rents are so high. Maybe it was some kind of bequest. Fact is, the Georgian terrace houses either side and across the road are as fancy as you’d expect for a street off the main drag of a wealthy seaside resort.

A Mercedes Uber pulls up. A man and a woman dressed immaculately in 1920s costumes hurry out of a door opposite and jump laughing into the back of it. If it wasn’t for the modern car with the decal on the side, I’d be worried I was seeing ghosts. I watch the car pull away, and see Georgiou standing on the other side waiting to cross.
‘Did you see that couple?’ I ask him.
‘What couple?’ he says.

I buzz the intercom and the door clicks open. Inside there’s a tiny, security lobby with nothing in it but another door and a perspex grille to the side. A woman frowns at us through the grille. I hold my pass up, she scrutinises it, then clicks us through the inner door. We walk round to the front of the office, which is a counter with another screen. She’s waiting for us with a ledger and a pen. It’s a confusing interaction; she uses code words and acronyms I’ve never heard before, and gets huffy when I ask what it all means.
‘Just sign here,’ she says, jabbing at the ledger with a biro. ‘And take this…’
She hands me a radio and a bunch of keys.
‘Press to talk,’ she says, holding her own radio up.
‘Yep. Got it!’ I say, waving the radio.
‘No. Press to talk,’ she says, then presses the side button on her radio. ‘Testing, testing…Control to R2, receiving…?’
‘Oh! Right!’ I say. Then I press my button and talk back.
‘R2 receiving, loud and clear. Erm…. Over.’
‘You don’t have to say all that,’ she says, clipping her radio back on her belt. ‘Just talk’

Once I’ve filled out the ledger with our details, the woman tells us that Billy, our patient, lives right at the top of the hostel.
‘It’s a long way up,’ she says. ‘Keep going till you can’t go anymore.’
‘Do we need oxygen?’
‘No. It’s not that high.’
I’m aware of her watching us as we go through the first fire door and start walking up.

‘Billy has breathing problems, discharged after a recent exacerbation, lives at the top!’ says Georgiou, striding ahead of me. ‘Makes perfect sense.’
The stairs go on forever, getting narrower and steeper as we go, first floor, second floor, third, up and up and up, past landings of decreasing size, everything warping and tilting like the house is morphing into a giant tree.
‘Where does this guy live – a nest?’ says Georgiou.
And finally we’re there, standing outside Billy’s room, panting. I lean on the balustrade, which wobbles so alarmingly I immediately stand up straight again.
Georgiou knocks.
‘Hello Billy?’ he says, putting his face close to the door. ‘It’s Georgiou, the physio from the community health team, come to see how you are. With Jim, the nursing assistant. Are you up yet?’
There’s a scuffling noise inside. I’m half expecting a giant squirrel to open the door, and actually I’m not far wrong. Billy is a hunched middle-aged guy, his t-shirt riding up over his belly, huge, dilapidated fur slippers on his feet, a tin of Golden Virginia clutched in his paws in lieu of an acorn. If he ever had a tail, he’d long since taken it off and wrapped it around his head for a beard instead. It seems to twitch as he stares at us.
‘What?’ he says.
‘We’ve come for a physio assessment,’ says Georgiou.
‘What kind of assessment?’
‘We want to see how you are on the stairs.’
‘Me?’ he says. ‘Terrible! There! That was easy! I’ve got the cee oh pee dee whatsit, I’m getting over a chest infection, I drink a bottle of rum a day, so all in all you might say I’m running out of options.’
‘I’m sorry to hear it.’
‘I’m sorry to say it. But what can you do?’
‘I think the first thing would be to get you in a flat nearer the ground.’
‘That’s true. You’re right there. They’re working on that … so they tell me.’
The radio squawks in my hand so violently I almost drop it.
Control to R2! Control to R2! Status update. Over.
I press the button.
‘Yeah. All good, thanks’ I say. Then, as an afterthought: ‘Over’.
Control out.
Billy laughs.
‘You know the best thing about radios, doncha?’
‘What’s that?’
‘The off button. So c’mon then. A stair assessment. Okay. Ready? There’s a fackin’ lot of ‘em. There! Bosh. Done. Thank you very much and goodnight.’

moth orchids

For the life of me, I cannot figure out this gate. It’s held with a strange drop-down mechanism I’ve never seen before, something you have to raise up then angle straight out so the hoop of the gate can pass over it. Something like that.
Brenda watches me from the back door.
‘There!’ I say. ‘Made it!’
‘Well done!’ she says, clapping in that speeded-up way people do with their wrists together. ‘It is fiddly!’
She stares at me so intently, her makeup and hair so perfect, her pink slacks and knitted white cardigan so – I don’t know – central casting, I get the strange feeling I’m in a sitcom. And I’ve forgotten my lines.
‘Come on in!’ says Brenda, improvising to cover. ‘We’re so grateful you stopped by.’
I follow her into the front room. It’s as immaculate as Brenda, of course, with the same, stagey aura of perfection.
‘Shall I fill you in on some background?’ she says, gesturing to a sofa.
‘Sure.’
I put my bags down, and when I sit on the big cream sofa, it’s hard to resist sitting exactly like Brenda, knees together, legs angled off to the left, like a debuttante or something.
‘I’m worried about James,’ she says, massaging the rings on her gnarly fingers.
‘I’m sorry to hear that, Brenda. Why? What’s been going on?’
‘He’s not himself. Six weeks ago we were on the bus together, going off along the coast, having a lovely day out. Having adventures. I mean – he’s never been the chatty sort, but if you ask him a direct question – nose to nose! – he’ll answer you alright!’
When she says ‘nose to nose’ she puts the flat of her hand to the end of her nose, then peeks round it, and smiles.
‘So – six weeks ago, James was his normal self. And now… what’s happened?’
‘Well he’s just become sleepier and sleepier, until this last week he can’t even get out of bed.’
‘Oh?’
‘It’s really not like him. He’s normally so active. I’m so glad you’re here because otherwise I don’t know what I’d do. I’ve got Steven of course, our son, and he’s wonderful. But he’s not a doctor, is he? He’s as worried as me.’
‘Well I’m sorry to hear you’ve had a difficult time of it, Brenda. Shall we go upstairs and say hello to the man himself?’
‘Yes!’ she says, brightening and standing up. ‘We’re both so grateful for the NHS. You’re lifesavers, really you are.’
‘That’s kind of you to say so.’
‘Oh I mean it. I have nothing but admiration for the work you do.’

I follow her up the stairs, past a pot of green and white moth orchids, reaching down towards us from their alcove.

James is lying on his side in bed, his flushed and veiny face quite a contrast with the crisp, white duvet. Brenda walks round to the other side and gives him a tentative shake.
‘Jimmy? Darling? It’s a nurse from the hospital. He wants to see how you are…’
James slowly opens his eyes and stares blankly at me. Then he smiles and mouths the word hello.
He does seem very sleepy, nodding off when I talk to him. And whilst it’s true the room is warm and close, still I’m concerned. I take a set of obs, which surprisingly come back as normal.
‘And six weeks ago you were off together on the bus for a day out?’ I say, feeling his pulse, wondering what on earth is going on with his guy.
‘Yes! He’s always been so fit. I can’t understand it.’
‘Has the doctor actually visited James?’
‘No,’ she says. ‘They rang me up and we had a chat. I don’t know what to make of it at all.’

I phone the lead nurse and we talk through the situation. She agrees that it’s a good idea to take some bloods and see if that sheds some light. Meanwhile, we book in a follow-up nurse visit for later in the day.
‘We’ll be in touch!’ I say, waving to Brenda as I walk back through the front garden, expertly flipping the gate latch. with one hand.
‘Thank you so much!’ she says, then steps back inside, and quietly closes the door.

*

Later that day I talk it over with the nurse who took the follow-up visit.
‘It’s strange,’ she says. ‘He looks really unwell, but I can’t put my finger on it. Brenda says six weeks ago they used to go on the bus along the coast. I couldn’t decide whether his speech was affected or not. Brenda says he’s never been chatty, but if you ask him a direct question nose to nose…’
She makes the same hand gesture that Brenda did when she told me the story, too.
‘Brenda’s known to the memory clinic,’ I say to her.
‘Er-hum,’ says the nurse. ‘But she seems pretty fine for all that.’

*

The bloods are all fine. Nothing at all to indicate any acute illness, nothing to explain his sudden six week decline, increased lethargy and inability to get out of bed.

I try ringing Steven, the son, for some more information, but his phone keeps going to voicemail. In the end I decide to book in some further nursing visits, and to email the GP with a breakdown of what we’ve found, and what we think might need to happen next, including CT head to exclude any acute changes there.

Luckily, I try one last time to call Steven before I send the email.

‘You know mum’s got dementia, right?’ he says.
‘Well … I read she was known to the memory clinic.’
‘Right!’ he says. ‘She’s pretty confused. I know she presents well, but honestly, she’s clueless. The thing is, up till now she’s been the one getting dad out of bed in the morning. Ever since his stroke he’s been much less active. If you left him to it he’d just stay there all day. Once he’s up he’s not too bad, but he needs a lot of encouragement. Mum’s been good up till now, but for some reason these last few weeks she’s not so able. She’s got this idea he’s going to fall and it’ll be her fault, or something. I don’t know. Anyway – I do what I can to help out, but I can’t be there every morning. I’ve got a job and my own family to take care of. So that’s why the GP got you lot involved.’
‘So this story about how six weeks ago they were off on the bus together along the coast…?’
‘Six years, maybe.’
‘And you’re not worried that your dad’s more unwell?’
‘Dad? No! He’s the same. I mean, look – he’s never been what you might call chatty…’