smile and act normal

‘You wouldn’t think it, but I’m seventy myself.’
Sam’s right, of course. With her metallic white hair cut jaggedly short and swept back in spikes, her sharp shirt, skinny jeans and fluorescent trainers, I’d have put her at fifty, tops.
‘My knees are worn out. Every few weeks I have to have a needle in my eye because of the macular degeneration. Which means I can’t drive. So I have to take the bus over here every day. And you know what buses are like. It takes me the best part of an hour there and back, twice a day. On top of that I’ve been living in the hospital most nights ‘cos my son in law had an accident and my daughter’s not coping. Plus my own life to sort out. Which needs a LOT of sorting out, these days.’
She takes a breath, staring off into the bright fall of afternoon sun through the window. ‘And I’ll tell you something else,’ she says, trailing off. ‘I’ll tell you something…’
Her chin begins to tremble and she has to turn away.
‘Sorry,’ she says, pulling a tissue from her pocket. ‘Sorry about this.’
‘That’s okay. I can see it’s hard.’
‘Hard!’ she says, with a bitter laugh. ‘Childbirth was hard. Divorce was hard. This is bloody impossible!’
She blows her nose and bins the tissue. Gives her head a little shake.
‘There!’ she says. ‘Now. Good. Where were we?’

We talk through the situation. How her mum Avril is ninety-eight, increasingly frail and forgetful, not eating or drinking, falling more often but refusing to accept any of the practical changes that might improve her situation. She went into hospital for a few days after the last fall. Being discharged today and expected home by ambulance any minute. Although there’ve been a lot of false starts and mix-ups as far as THAT goes. Anyway – Sam is the main carer for her mother, with a little private top-up help from a family friend. Sam has Power of Attorney, thank goodness, which is something, a small victory. But so far it hasn’t helped all that much in practice. Avril refuses to talk about residential care, even for respite, whether for her benefit or – more significantly – for Sam. Things have been staggering on like this for a while. It’s not getting any easier.
‘She was always bloody minded,’ says Sam. ‘I suppose it’s how she’s lived to such a ripe old age. It’s probably what’s kept her going all these years. I mean – It’s not like she’s any different now she’s old. In some ways I think she’s actually more of herself than she was. Which sounds odd, but you know what I mean. Do you?’
I nod and say I think I do.
‘Some things have changed, of course. She repeats herself a lot. Over and over. If I hear that story one more time of her in the air raid shelter with the GI and the rabbits I’ll scream. But essentially she’s still Mum. Which is what makes it so hard. Don’t get me wrong. I love my mum and I’d do anything for her.’
Sam laughs again.
‘Like get the bus twice a day! Anyway – enough of my moaning. Let me show you how I’ve organised her laundry…’
‘Okay.’

I follow her into the hallway. She opens an airing cupboard where a water heater is surrounded by shelves of slacks and vests, everything ironed, neatly stacked and lined up, orderly piles of pants and socks, a clutch of enormous bras hanging down from the top shelf like outlandish nests.
‘What d’you think?’ she says.
‘Wow!’ I say. ‘Pretty organised. You do an amazing job.’
‘You know what? I think I do,’ she says, giving the clothes a long, proprietary look, then slowly closing the door.
The buzzer goes. She stiffens.
‘That’ll be mum,’ she says. ‘Smile and act normal.’

anna, landed

If this happened in a dream – and with the amount of opiate medication Anna is taking, I’m guessing most things must seem fuzzy and dream-like – it would no doubt happen like this: Anna drifts down from the sky in a semi-recumbent position, her eyes closed, her hands folded on her tummy. The roof of the house shivers, becomes transparent and loose, moves apart. Anna drifts down through the Anna-shaped gap, down through through the attic, the upper bedroom, the floor, the fixtures, the criss-crossing joists, the cobwebbed bricks, the insulating wool. Down through the cloying air of the living room, to settle finally on the soft brown sofa. And the ceiling heals up, the roof and everything else. And the cushions roll over like squashy boulders and mould themselves around her. And she’s there, back from the hospital, thoroughly landed. And she opens her eyes as her daughter Christine wanders in to see her, a jug of iced water and a glass tinkling gently on the tray.
‘Did you put in a pinch of vitamins?’ says Anna, grunting as she pushes herself into a more upright position.
‘Yes.’
‘A pinch? Not a spoonful?’
‘A pinch. Yes.’
‘Last time it tasted like a spoonful.’
‘I don’t think so.’
‘Well it did to me.’
Christine shrugs and goes back out to the kitchen where she carries on talking to her friend in an urgent kind of tone.
‘She’s a good girl,’ says Anna. ‘I don’t know what I’d do without her.’

I finish writing up my notes and then put the folder to one side.
‘The thing about back pain – the advice they give these days – is to keep moving.’
She snorts.
‘That’s easy for you to say. You’re not the one in agony.’
‘I know it’s difficult, Anna, but the longer you stay on the sofa the harder it’ll get. You’ll become deconditioned. You’ll be at risk of getting pressure sores.’
‘I know my own body.’
‘Absolutely. But I think there are some practical things you could do to make things easier for yourself. To give yourself the best chance of recovery.’
‘Such as?’
‘Sleeping in bed, for a start. You’d be flatter at night, which is better for you. It’s higher off the ground for getting in and out. And with a bit of re-organisation, you’d have more chance of getting mobile again.’
‘Where do you suggest I put everything?’
I look around. The house is packed full with ornaments and hangings, boxes on top of tables on top of bigger boxes, every bookshelf crammed with books, even the windowsills piled up with stuff. The only free space is the giant plasma TV screen on the wall facing the sofa. Anna turned it off when I came in, and now it hangs there, a window onto a darker, clearer world.
‘It’s difficult, I know, but not impossible. All you need is a decent amount of space for you to get about. As things stand, you’re much too restricted. How do you even swing your legs over to go to the loo?’
She closes her eyes.
‘I manage,’ she says.
‘I’ll ask the physio to come and see you, but I know that’s the first thing they’ll say.’
‘I’ll think about it,’ she says, then reaches to the side for a glass of vitamised water. ‘In the meantime – please speak to the doctor about my pills. Because nothing’s working and I’m in absolute agony.’
‘Of course,’ I say, picking up my bag to go. ‘I’ll pass on the message.’

stand by me

It’s Fifties karaoke at the Eventide Residential Care Home – so loud the care assistant who answers the door has to lean in to hear who it is I’ve come to see.
‘In the conservatory!’ she shouts, laying a hand on my shoulder. ‘Are you alright to give the injection there? I’ll put a screen round.’
‘Fine!’
She hurries off to fetch it, and I wait with my bags in the hallway. I don’t want to add to the chaos in the lounge. They’ve set the chairs back around the edge of the room to make space, but even so it’s looking pretty busy. There are residents dancing with the staff, relatives slumped on chairs next to sleeping residents, a handyman struggling through with a box of tools (who decides that doing a restrained kind of jive is the easiest way to make any progress); a kitchen assistant keeping everyone topped up with tea and biscuits, the whole scene dominated by a gigantic, floor-to-ceiling plastic christmas tree flashing its lights in and out of time to the music, and a giant plasma TV screen on the wall, scrolling through the lyrics of the current song.

It strikes me you could take any Fifties hit and find a poignant match with the scene in a home for people suffering from advanced dementia.

Now playing?
There Goes My Baby – The Drifters.

I decide to sit down on a padded bench to keep out of the way until the assistant returns.
An elderly woman in an electric blue dress and pure white hair swept up in a bun comes and sits next to me.
‘How are you today?’ I ask her.
She smiles in a non-committal away and shakes her head from side to side.
‘Love the decorations!’ I say, glancing around. The truth is – they make me feel a little scratchy. We’re not even done with November, and here we are in a thorough-going grotto, surrounded by strobing lights, silver lanterns, baubles, tinsel – as thickly applied as if someone had been given a box of tack and told to empty it in five minutes or else. What makes the effect even more dizzying is the number of mirrors around the place, one behind the bench, and one behind the reception counter opposite, so that whichever way I look, the decorations, my reflection and the reflection of the woman sitting next to me are replicated over and over and over, smaller and smaller, all the way to infinity.
‘Lovely to have the music!’ I say to the woman.
She shakes her head, smiling coyly. And then – just as I think she’s happy not to speak but just to sit there, she suddenly leans in and starts an intense monologue, so random I struggle to follow the logic of it.
‘Oh!’ I say – and then, tapping my ear – ‘Sorry! It’s really hard to hear with everything going on!’
The woman laughs and slaps my knee, as if I’d said something shocking, just as the assistant comes back, pushing the kind of hospital screen you might see in a Carry On film.
‘Alright?’ she says. ‘Put him down, Samantha! This way!’

The assistant uses the screen ruthlessly, like a kind of snow plough, but even so, getting through is a tricky business. I end up jigging about in her wake with a couple of residents. One of the relatives slumped in the chairs gives me a sad kind of smile.

Now playing?
Ain’t That A Shame – Fats Domino.

The conservatory is obviously being used as a refuge for any resident who doesn’t care for rock n’roll. Margaret, the patient I’ve come to see, has a blanket over her head. Her daughter Leonie is sitting next to her, looking as washed-out as the mug of tea she cradles.
‘Margaret?’ says the assistant, gently stroking her hand and then slowly pulling the blanket clear. ‘The nurse is here to give you an injection.’
‘Lucky you!’ says Leonie, looking at me with a smile that segues into a grimace.
Margaret looks outraged.
I kneel down in front of her.
‘I’m so sorry to disturb you, Margaret! It’s a real nuisance, I know – but I’ve been asked to give you another one of those injections? Is that alright?’
‘It goes in your tummy,’ says Leonie. ‘It’s not so bad, mum. D’you remember? From yesterday?’
If Margaret does remember she makes no sign, looking down at me in horror.

Another assistant comes through with Margaret’s yellow nursing folder and a box of Enoxaparin. There’s nowhere to set the folder down and fill out the scrip, so I do my best to do it all in mid-air whilst the assistants negotiate enough space to put the screen around Margaret’s chair. I’m on the outside of it for the moment, which is fine – except I’m immediately accosted by a tiny woman as fierce and pointy as a vole in a twinset. She stands by the screen and starts picking ineffectually at the fabric whilst muttering bitterly about something.
‘Are you okay?’ I say to her. ‘We won’t be long.’
She comes right up to me and starts talking quickly and severely – about what it’s impossible to know.
‘I love this music!’ I say at an opportune moment. ‘What d’you think? Do you like rock n’roll?’
She starts back, frowning in such an angry way I think I might have touched on exactly the wrong thing.
‘Classical? Maybe they’ll have a classical session next week…?’
Luckily the assistants have finished setting up the screen. The second assistant leads the angry woman away whilst I duck behind the screen and prepare to give the injection. It all goes smoothly, thank goodness. Leonie kisses her mum and puts the blanket back over her head whilst I clear up and the assistant folds the screen away.
‘I’ll just take this back then I’ll let you out,’ she says, pushing it through the lounge.
‘Okay. Won’t be a second.’
As I’m writing a brief note in the yellow folder, the resident in the chair next to Margaret, a large, slack-faced man in a business suit two sizes too big, holds out a Ribena carton to me.
‘No thanks!’ I say. ‘I’m fine!’
But then he shakes it, I realise it’s empty and he wants me to take it away.
‘Yep! Okay!’ I say, balancing it on the folder with the rest of my rubbish.
It’s easier getting through the lounge, thank goodness. The music is slower and the floor has cleared, apart from the angry woman doing a slow foxtrot with the second assistant.

Now playing?
Stand by Me – Ben E. King

boomerang

Brenda’s daughter Emma shows me in. She’s polite but thin-lipped, pale and precise, like someone with a hundred other things to do and none of them as stressful.

‘Mum has dementia and doesn’t know it,’ she whispers in the kitchen after letting me in the back door. ‘It’s been getting worse this last year. She’s been found wandering in the street a few times, brought back by neighbours and police. She lives with my brother, Tom, but they don’t get on. Tom had a Jack Russell, Billy. Mum used to look after him when Tom was at work, but she kept tripping over it so we…erm… we made other arrangements.’

It sounds ominous, but I don’t get a chance to ask what she means, because Emma turns and walks through into the lounge.
‘The nurse is here, mum.’
‘Nurse? What nurse?’

Brenda is still sitting in the chair she was helped into by the ambulance when they brought her back from hospital. She’s resolutely straight-backed, like someone who got delivered to the wrong house by mistake and doesn’t feel able to tell anyone.

The way the seats are arranged means that Emma is on the right and I’m on the left, with Brenda the focus of our attention. It’s an unfortunate set-up, the community health version of good cop / bad cop, with me smiling and nodding and making encouraging noises, tapping away on the laptop, and Emma perched quietly on the opposite side, picking her mother off every time she glosses over the facts, which is all the time, of course. Even though I’ve got every sympathy for Emma, still I’d rather she was in another room. I can’t help glancing at the empty dog crate with a photo pillow of a Jack Russell at one end, Billy transmuted from pet to soft furnishing.
‘Where’s Billy?’ says Brenda. ‘I’ll take him for a walk later.’
‘Billy’s gone,’ says Emma.
‘Gone? Wha’d’ya mean, gone? Gone where?’
‘We talked about this, mum He kept pulling you over.’
‘Don’t be so soft.’
‘Don’t worry about Billy, mum. He’s out of the picture. Okay? When you went into hospital. He’s been taken care of. We’re talking about you now.’
‘I don’t care about me.’
Emma sighs. Zips her fleece higher up her neck. Pushes her hands deep into the belly pockets of it.
‘No,’ she says. ‘And that’s the problem.’
‘I’m sure there’s some way you can get to walk…erm… the dog, Brenda. With someone else, maybe? You know? To hang on to?’
I glance at Emma. She closes her eyes and twitches her head from side to side.
I smile and look back at Brenda.

If she heard any of this she doesn’t let on. She’s switched her attention to an old, dented, dark-wood boomerang that’s hanging from a nail on the opposite wall.
‘D’you know what that is?’ she says.
‘A boomerang! Looks like a proper working one. Not the souvenir type.’
‘My father brought that back for me. He was in the merchant marine.’
‘Was he!’
‘Yes. The merchant marine. And he brought that back for me. A lovely boomerang.’
‘Did you ever take it over the fields and throw it?’
Brenda laughs.
‘What? It’ll take the top of your head orf! Like a boiled egg!’
‘I think you’re supposed to catch it.’
‘Are you? Well I’m sure I don’t know’
Emma sighs. When I look at her she raises her eyebrows.
‘Anyway. Let’s get back to seeing how we can help,’ I say.
Brenda looks sad again.
Stares at the dog crate.
‘I think I’ll take Billy out later,’ she says.

the plan

Stress is like bad weather. You could draw isobars on a map. Arrows indicating direction of flow. Cloud banks. Lightning.

The Out of Hours team had taken a stormy call from Graham first thing that morning. He said his mum Sara had effectively been fly-tipped back home, and the promised follow-up from our community health team scheduled for the next day was completely unacceptable.

I didn’t know anything about it, so before I picked up the phone to call Graham back I scrolled through the extensive notes on the system. They described how Sara had been admitted to hospital by ambulance with an infection, then subsequently found to have suffered an ischemic stroke. Unfortunately she still had marked problems with balance and coordination even after thrombolysis, and her speech, memory and mood were also affected. Various treatments and therapies had been started, but Sara had become distressed and unhappy on the ward. Graham attended a multi-disciplinary meeting to weigh-up the benefits of keeping Sara in hospital with the risks of sending her home. Everyone had been in agreement: the plan was to discharge on the understanding it would be bed care only for 48 hours until the community health team could assess and organise the necessary moving and handling equipment. Carers had been arranged to come in four times a day to help with all of this.

A substantial set of notes, but one that demonstrated the lengths the hospital was prepared to go to get Sara back home as safely as possible.

When finally I manage to speak to him, Graham is as cross as the Out of Hours operator had described.

‘I’m not stupid’ he snaps. ‘I know what they’re really worried about. They just want the bed. They couldn’t care less. But what they don’t seem to understand is how much my mum used to do for herself. She was an independent lady. She couldn’t bear to lie around all day. I can’t just leave her there, soiling herself in those pads. I mean – there’s nothing here for her. If I can help her to the commode I will…’

He races on barely pausing to breathe, mixing in the horrors of his mum’s current situation with anecdotes about the bridge club she went to twice a week, the dog, the twins’ birthday coming up, the state of the garden and so on. If I didn’t have the MDT summary in front of me I would never have guessed that Graham had been there at all.

As gently as I can I try to go over the plan as described in the notes. Bed care only, until the community health team can go in the next day to assess all transfers and order up the necessary equipment.
‘It’ll go in as urgent,’ I tell him. ‘We’ll work as quickly as we can.’
‘She’s an active person!’ says Graham.
‘Yes, but then – of course – she’s had this stroke…’
‘All this lying around isn’t good for anybody. She’ll get bed sores. She’ll go mad.’
‘I think the plan is to go steady and build your mum’s strength up gradually. The last thing you want is for her to fall, break something, and go straight back to hospital. It didn’t sound as if she was very happy there.’
‘She wasn’t happy.’
‘No. So look. We’ve got to take things steady and give them time to work. The carers will be coming in through the day and evening. We can organise someone in the middle of the night if that would help, too. We’ll get a therapist in to assess all the manual handling angles, see about a hospital bed and take it from there. How does that sound?’
‘I think if my mum wants to get out of bed I’m not going to sit there and do nothing. I know you don’t like it, but there you are. I’m just being honest. I know what I can and can’t do. And what I can’t do is simply sit there and put my fingers in my ears when she cries out.’

As sympathetically but as clearly as I can I go over the plan again. Graham is too stressed to take it in, though. After I put the phone down I talk it over with my colleagues. We look at the schedule but there’s nothing we can do to bring the manual handling assessment forward. The best we can do is send a nurse in to do a quick review of obs, pressure areas and a welfare check.

I give the nurse a heads-up on the situation; she thanks me with an ironic smile.
‘Why d’you always give me the difficult ones?’ she says.

*

When I see the nurse at the end of the shift I ask her how the review went.
‘Easy,’ she says.
‘Oh? Really? Wow! I’m amazed. Graham was so incredibly stressed on the phone.’
‘Well I wouldn’t know about that,’ says the nurse. ‘There was no-one in. Turns out his mum fell. She’s back in the hospital.’

sad eyed lurcher of the lowlands

It was the dog that brought it back.

I had a sudden and vivid picture of the granddaughter’s English Lurcher, slowly lifting its head out of my bag when I went to fetch my steth. A mournful expression, like it had seen what I had in there and was profoundly disappointed.

As soon as I remembered the dog I had the whole scenario, in every detail: the carers who’d said Edie was off her legs and stuck in the chair; the GP who’d diagnosed an exacerbation of chronic shoulder pain, and prescribed stronger analgesia, referring Edie to us for physio, nursing, equipment, bridging care and whatever else we could think of; Edie herself, slumped over in a high-backed chair watching The Chase on TV; the granddaughter; the dog.

More than anything I remembered how successful the visit had been.

I’d met up with Jason for the double-up. Her obs had been fine, but because of her shoulder pain she’d struggled to push herself up from the chair. The longer she stayed scrunched up like that, the less likely she was to move, until she’d pretty much seized up completely. For a while it had looked as if Edie might have to go to hospital, but with patience, encouragement and some delicate handling, we’d managed to get Edie out of the chair and moving again. We’d put her to bed where she’d be able to rest in a more appropriate position, and mobilise more readily to a commode. It was all fine. The carers would be coming in as before. The stronger meds would ease things along, and a programme of physiotherapy would help Edie recover her strength and confidence. All in all, a very practical and successful intervention.

Which is why I couldn’t understand why Jason was talking about a complaint.

It had come from the daughter, who lived some miles away. Her view was that her mother should have been taken to hospital, or at the very least been given a bed in a rehab facility. According to the daughter we had failed in our duty of care. She had written to her MP. We had a day to write a statement.

‘It’s okay,’ said Jason with a shrug. ‘I don’t think the daughter really understands how things are with her mum. Who knows what the family dynamic is there? Maybe she heard stuck in chair and thought hospital? Never mind. It’ll be fine. We did the right thing.’

I felt aggrieved on Jason’s behalf. I’ve known him ever since I joined the team. An expert physio, he was friendly, positive, empathetic – in fact, a perfect example of what a community therapist should be. I could see him now, taking the whole situation in, crouching beside Edie, one hand on hers, patiently going over the options, how we could help, what we could try. No-one could have done more, and – I don’t think – could have produced such good results. All this at the end of a long and gruelling day. The injustice was crushing.

Jason slapped me on the shoulder and smiled.
‘Cheer up, Jim!’ he said. ‘You remind me of that dog!’

behind the glass

The almshouse cottages are laid out on three sides of an immaculately kept croquet lawn. The white enamel paint is a little chipped on the hoops, showing patches of dark iron underneath. Maybe that’s through being struck with croquet balls over the years, but I’ve never actually seen anyone play. In fact the most life I’ve ever seen on the green is that crow, hopping around in the misty rain like a sexton in a frock coat, his hands under his tails, inspecting the lawn for worms.

Helen won’t be out playing croquet anytime soon, rain or shine. It’s enough of an adventure just making it from the armchair to the bathroom and back. I can imagine she would have been good at it though, sometime before the war, bobbing down to line up the final shot, giving the ball a hearty thwack, snatching off her cap, throwing it in the air, and then jogging over to the judging desk, the croquet mallet balanced on her shoulder. But of course, she wouldn’t have been living in an almshouse then. She would have been in nursing accommodation in London, excitedly practicing the air raid drill, hurrying out to dances, learning her craft.

Seventy years or more have passed since then, and Helen’s world has contracted to the size of a single room. It was small to begin with, but in an effort to stop her from falling the bed has been brought into the living room, leaving just enough room for a commode, a zimmer frame, an armchair and a side table. She still has her shelves of books, of course – one case devoted to Miss Read, whose name is repeated with dizzying regularity up and down the spines – but if you wanted to fetch one out you’d have to move a stack of things first.

Helen has been sitting this whole time with her head resting on the open palm of her right hand. She straightens now and again to look between her daughter Karen and me with an anguished look on her face.
‘I simply don’t understand what it is I have to do,’ she says.
‘You don’t have to do anything, mum. We’re just talking about things we can do to help you get better.’
‘Is it money? I think I have enough. But if you need more I can get another job.’
‘No, mummy. Don’t fret. We’ve got enough money. You’re job is to rest and focus on getting better.’
‘But all these people,’ says Helen, frowning at me. ‘I don’t know who they are or what they want. What do they want, Karen?’
‘They want what’s best for you, mummy. Like we all do. Try not to worry.’
‘But I do worry! I can’t stop worrying!’
Karen goes over to give her mum a hug, but Helen irritably pushes her away and then slumps forward again.

It’s an impossible position for Karen. Not only does she have the grindingly practical business of caring for an elderly mother whilst running a family of her own, she has to do it without the one person she’d naturally have turned to for advice and support, as she did all through her childhood, adolescence and beyond, the single parent who’d trained and worked as a nurse, the woman who’d seen things and suffered things and come out the other side with her hands and her uniform clean, who’d always somehow managed to be just as strong and as resourceful as she needed to be, the woman that was somehow in the room and yet out of it at the same time, as remote as that black and white photograph of a newly qualified nurse in a pristine uniform, sitting with a straight back behind the glass.

‘Anything you could do to help would be great,’ says Karen, smiling weakly at me. Then reaches over to squeeze her mum’s shoulder.