The Language of Dying Read online

  ‘God, I’d forgotten about that.’ I pick it up and giggle some more.

  ‘Yeah, but what is it?’

  ‘It’s an ashtray. Dad made it.’ A snort of laughter escapes me. ‘At the hospice.’

  Davey stares at me. ‘He made an ashtray at the hospice?’

  I look at the terrible piece of sculpture in my hand and then up at my brother. ‘Yeah. Rude, isn’t it?’

  A smile stretches from Davey’s mouth to his eyes as he shakes his head. ‘Can I have it?’

  I nod. ‘Sure. Of course you can.’ I can see why he’d want it. It sums you up, really.

  He takes it from me and stares at it. ‘I didn’t even know he’d been to the hospice.’ He turns the ashtray over in his hands as if it is precious treasure. I don’t mind Davey having it. He is a good boy. He has a deep soul.

  ‘He only went a couple of times,’ I say, staring at the ceramic.

  *

  ‘So did the woman from the hospice come today?’ I ask when I get in from the library. It’s freezing outside and my nose is numb in the heat of the kitchen.

  ‘Hmmm,’ you say.

  I pause by the kettle. You’re leaning against the radiator.

  ‘Did you ask her about the day centre?’

  Your nose crinkles slightly. ‘Yes.’

  ‘And?’

  ‘Well, she made it sound all very perky.’ Your face isn’t convinced. ‘They have art classes and music classes. And they come and collect you and drop you off. On Wednesdays, apparently.’

  I pour us both a mug of tea and hand you yours. I’ve put some cold water in it. Your insides can’t take the heat anymore.

  ‘Thanks, darling.’

  I raise an eyebrow at you. ‘Are you going to go?’

  ‘I can’t decide.’

  I recognise that stubborn face and I try not to smile. ‘Well, what else are you going to do all day? Sit in here and watch daytime TV?’

  You raise an eyebrow right back at me. ‘I like daytime TV.’

  I sigh. ‘God, you’re incorrigible, Dad.’ I look at my watch. It was late closing at the library tonight and it’s nearly seven thirty. ‘Speaking of telly, Eastenders is on.’

  You groan. ‘Do you have to put a dying man through that rubbish?’

  ‘Shut up,’ I say as I flounce down the corridor. ‘Or you’ll be dying a whole lot sooner than you expect.’ I’m smiling, though. How we smile in all this, I don’t know. But we do.

  *

  The first time you go you come back in a grump. They wouldn’t let you smoke inside. I point out that perhaps that isn’t the most unreasonable request. You mutter something about stable doors and bolted horses. I smile. I don’t think they’ve met a lot of people like you. Maybe a few that are a bit like you on the inside, but none exactly like you.

  ‘I mean, we’re all bloody dying there.’ You are rolling a protest cigarette on the breakfast bar as you speak. ‘So what the hell is wrong with having a room where you can bloody smoke? It would be a bit bloody hypocritical to quit now, wouldn’t it?’

  I shrug and keep my smile inside. You are feistier this week. Different medication. The lift won’t last, but it’s still good to see you almost yourself

  *

  The second time you go the effect of the new drug is wearing off and when I get back from work you are sitting in the kitchen, your head resting on your hands. You sit up and smile as I put the kettle on.

  ‘Good day, darling?’

  ‘Oh, you know. Same old. Books come in, books go out.’ I smile. ‘And you? How was the hospice?’

  You shrug. ‘I don’t think I’ll go back again.’

  I pull milk out of the fridge. This isn’t childlike stubborn defiance. I recognise the finality in your voice. No more biscuits before bed. No, you can’t go out dressed like that. Your mother isn’t coming back. I’ve heard that tone in thousands of your words over the years.

  ‘How come? Did something happen?’

  ‘Not really.’ I can hear how tired you are. ‘But I can’t give them what they want. They want me to fulfil a need in them, not the other way round.’

  I sip my tea. There’s never just a straightforward conversation with you. ‘What do you mean?’

  ‘They want to make me feel better about dying. To make me feel better about dying gives them a purpose.’ You pause. ‘But I’m fine about dying. And they just can’t accept that. It takes away their purpose.’ You sip your tea and flinch. ‘And I’m buggered if I’m going to waste what’s left of my time pretending to be terrified just to fit into someone else’s picture of how things should be. I’d rather watch reruns of Dalziel and Pascoe on UK Gold.’

  I shake my head. No, they won’t have met anyone like you before. ‘How did they take it? Did they try to persuade you to change your mind?’ I feel a little sorry for the staff at the hospice.

  ‘Obviously.’ You raise an eyebrow. There is a glint in the eye underneath. ‘Until they saw what I made in ceramics this morning. Then they gave up. I don’t think they wanted me infecting the rest of the inmates with my free-thinking attitude.’

  ‘And what exactly did you make today?’

  You pull the ashtray from your pocket and put it on the breakfast bar. I stare at the misshapen blob, but I know you well enough to know what it is. I smile a little and chew my lip. You’re grinning at me.

  ‘Oh Dad, you are awful. A bloody ashtray.’

  ‘Uh-huh. And it’s better than that. I made four. I left the other three in the TV room just in case anyone fancies starting a smoking rebellion.’

  I look at you and still can’t tell if you’re being serious. We burst into laughter together, snorting into our tea and then go to find an old detective show rerun to watch.

  You take the ashtray with you.

  *

  I look at the ashtray in Davey’s hand and the memory seems to be too far away, not only a month or six weeks in the past. The ashtray is a relic from a lost civilisation. ‘Look after it, won’t you?’ Davey nods, and goes into the kitchen to zip it away safely in his holdall. The doorbell goes.

  ‘I’ve brought this for you.’

  Behind Barbara a middle-aged man carries what looks like a folded wheelchair. ‘Upstairs with it, love,’ she tells him. ‘Just along the corridor.’

  She looks back at me and squeezes my arm. ‘I thought it might make things a bit easier.’

  Davey and I follow her upstairs where the man is unfolding the contraption. It isn’t a chair at all. It’s a commode. It is ugly and out of place and, just like at the cemetery, my empty thinking space is filled with images of concentration camps. I don’t know why. As far as I know they didn’t have commodes in Belsen. Maybe it’s just the sheer loss of human dignity that overwhelms me. Is this what it comes to, then? All that life and music and madness leading up to a grey steel chair with a pan in the seat?

  The chair glares back at me. I don’t want to touch it. I think that if I do then I will somehow bring it to life. Maybe it is haunted by all the bitter dying souls that have used it. For a second I see tormented faces in the weave of the canvas and then I blink them away and curse my empty thinking space.

  I tell Barbara about you getting out of bed. I don’t need to explain too much because even now one of your arms keeps rising from the covers. She nods.

  ‘That’s the terminal agitations starting.’ She squeezes my arm. ‘They’ll probably last a day or two and then he’ll settle back down.’ I love the lilt in her voice. It flows over me like a balm, even when I don’t want to understand her words. They exist separately in my head and neither is good. Terminal. Agitation.

  ‘But what is he trying to do?’ I look at her as if she has all the answers. She doesn’t, of course.

  ‘I don’t think he’s trying to do anything, love. I don’t think he knows he’s doing it. His body’s just shutting down.’ She tucks your arm back under the cover. ‘I know it looks disturbing, but it’s normal in this situation. It’ll slowly happen le
ss and less as he slips further away from us.’

  She is respectful, Barbara. She doesn’t pretend to share our emotion, but she certainly understands it. That’s what the night-shift nurses don’t have. They don’t have her care. It is a special thing, that care. I hope someone in her life appreciates it.

  ‘Shall I arrange for a Macmillan nurse to sit with him tonight?’ She looks right inside me. ‘You look like you need a decent night’s sleep.’

  I nod. That would be good. That would be very good.

  *

  When she’s gone I clean out your mouth and talk to you. I think you’re listening. Your eyes watch me as I moisturise your mouth. Your teeth are too big in your cheeks and I work the damp cotton bud gently around them, cleaning out the scum and saliva residue that’s collected there. It doesn’t bother me. Not like the jar used to. I guess we all adjust to things and the horrendous becomes normal.

  Your arms still tremble and rise and I try to handle them like Barbara would but I don’t think my grip is that subtle. My own body aches from the activity of the night and I think maybe I bruise your wrists a little as I put your thin limbs back under the duvet from which they are determined to escape.

  ‘Sorry, Daddy,’ I whisper. ‘I’m sorry, Daddy.’

  Eventually, I perch on the bed next to you so that I can stroke your head and rest mine on the wall behind us. The plaster is cool and feels good and I let my eyes shut. They sting a little.

  I don’t know how long Penny has been gone but it feels like hours. It probably is. I wonder if Simon is on the train yet. I wonder if I’m ever going to see him again. I wonder what he and Penny said about me in the car. For a second I try to remember what I said to Paul in that white rage, but I can’t bring the words back. I wonder if they’re even important. I doubt Penny remembers them. She just remembers the way I said them. I think about the way she looked at me and I wonder if maybe I’m showing through my cracks.

  When I realise I’m whispering aloud, I open my eyes. My hand is squeezed tight around your thin hair and you’re looking up at me. You’re definitely seeing me. I let go immediately, shocked by myself.

  ‘Oh God, Dad, I’m sorry. I was drifting a bit. I’m sorry.’ I stroke your hair back into place and kiss the top of your head.

  Your mouth is working hard trying to speak. ‘What is it, Dad? Do you want a drink?’

  A slight shake. More in the eyes than the head.

  ‘The toilet? Do you need the loo?’ A nod.

  ‘Hang on, I’ll just get Davey to help.’ I kiss your head. It’s hot. You’re sweating. ‘Are you sure you don’t want a wash, Dad? I can do it. I won’t get the nurses.’

  I see hesitation in your eyes. You do want one. I can see. I think about that lost dignity you must be feeling and I want to tell you it doesn’t matter. Not in the great scheme of things. This is just the end. It isn’t the everything of you. And it’s the everything we’ll remember when the memory of this fades. I remember me and Penny in the bath splashing bubbles, you smiling behind the camera. Or maybe I just remember the yellowy seventies photograph, but either way those things are the everything. All moments that have arrived here.

  I can’t explain this, though. The words are tangled on my tongue and I’m not sure they would make a difference. Because I guess for you the everything is done and there is only the now. And in the now your loss of dignity is everything.

  So instead of talking I go and get Davey to help me get you up.

  *

  We get you sitting on the side of the bed, the morphine driver hanging from your arm.

  ‘He wants the toilet and a wash,’ I say to Davey.

  ‘Well, he’s not using that thing.’ His voice is indignant.

  I know what my little brother is talking about without even looking out into the corridor. Maybe he can hear the ghosts in the commode too. I nod.

  ‘I’ll run a bath and if he sits on the loo then I can sponge him down. Can you help me get him in there?’

  Davey looks at me. ‘You start the bath running, but I’ll wash him. You change his bed sheets. Make it nice and fresh.’

  I am surprised. ‘Are you sure? I can do it …’

  Davey smiles at you. ‘This is blokes’ stuff, isn’t it, Dad? Now come on, let’s get you in the bathroom.’

  Davey is gently firm with you in the way Barbara is and I watch with awe as he half carries you, pushing the bathroom door shut behind you both. I watch the glass there for a minute or two and listen to the tone of Davey’s voice as he talks to you. He talks as if this is the most normal thing in the world. Davey has surprised me again. He fights so many demons, but in the here-and-now he’s got what it takes.

  I’m crying as I change the stained sheets and I don’t know who for. Maybe for all of us. Maybe just for me. There is a worm in my head that whispers that it isn’t only Paul who doesn’t think other people feel and think and care. And maybe the worm is right.

  When Davey comes out of the bathroom and we’ve got you back into bed, I hug him. I hug him tight and I hope he knows what I mean by it.

  *

  Penny comes back with the baby monitor. When she proudly pulls the large box out of the Argos bag, I stare at it. Davey does too. She looks at both of us.

  ‘I was thinking about it in the car after I dropped Simon off. About the way he keeps getting out of bed. And so, voilà’

  We still don’t get it and she sighs. ‘It’s a video monitor for babies. You set the camera up in the bedroom and then plug the receiver into a TV somewhere else. I thought we could bring the portable down from your bedroom into the lounge. That way we can see when he’s trying to get up.’

  I look at the machine and then at Penny. She shrugs. ‘I was just thinking how awful it would be if he fell out of bed and we didn’t know for a while. I couldn’t bear it.’

  I look at her plump lips and perfect face and wonder how I ended up with the empty thinking space. It isn’t fair. I should have thought of the baby monitor. I should have. But then, unlike Penny, I guess I never got to actually have any babies.

  ‘It’s a good idea, Pen,’ I say, and I’m glad my envy of her can’t be heard. ‘Good thinking.’

  She doesn’t say anything, but she smiles a little and I know she’s pleased. I look at Davey making more tea, and Penny unwrapping the box and I think that sometimes I don’t know them at all.

  It takes us about half an hour to get it set up and we put the monitor in the kitchen. I turn the grill on to make more bacon sandwiches. We are pleased with ourselves, as if the monitor will actually solve the problem. It doesn’t though. Of course not – it’s designed to display the problem, not solve it. Our self-satisfaction doesn’t last.

  One side of the bacon has barely started sizzling when Penny scrapes her stool back. ‘Oh, he’s moving!’

  The three of us gather round the screen. The image is projected in a strange green colour, which makes it even more surreal. I feel as if we’re spying on you. Your legs slip over the side of the bed.

  ‘I’ll go.’

  *

  And that becomes the pattern of the day. You barely settle at all, and I find that I am transfixed by the portable TV. In the afternoon we take it into the lounge so that we can watch a movie, but my eyes keep drifting away from the big screen to watch you on the small one. The pale green light makes me feel queasy, but I can’t help but stare as your toes twitch and I know that any moment now you are going to start those strange jerky movements. I wonder where the energy comes from. Your organs must be eating themselves to stay alive by now. That’s if the cancer hasn’t got there first.

  The three of us don’t speak much. Penny tries, but gives up after a while. Even she can’t make this easy. My thighs hurt from running up and down the stairs and my neck throbs with the start of a headache. The tension is unbearable.

  We have take-away Chinese for dinner, which we eat silently. We get up twice during the short meal to get you back into bed. As I bite into a spring rol
l I wish with a breaking heart that you’d just hurry up and die. I don’t feel any guilt. I know wishes don’t come true.

  Night falls, another circle of the clock done. I like to see the empty blackness outside. It lets me believe for a while that the whole world is within these walls. That nothing else exists. I don’t want you and us diminished by the million others looking out into the blackness, listening to the clock tick away the life of someone they love. Penny goes to bed at ten. She’s been asleep on the sofa for an hour and Davey gently wakes her. I can see he’s tired too, whereas I am wide awake in my exhaustion.

  ‘You take my bed, Davey. I’ll stay down here.’

  ‘No,’ he says. ‘Don’t be stupid.’

  I shake my head. ‘I’ll wait up for the nurse. I’m not tired anyway and I want to watch some telly for a while. Maybe read a book.’

  He looks at me. I shove him a little towards the stairs. ‘Go on. Do as you’re told.’ I kiss him on the cheek and won’t take no for an answer.

  ‘Thanks, Sis. Just shout if you need me for something.’

  His tread is tired on the stairs and I know he’ll be sleeping in minutes just like Penny. He didn’t need to thank me. I didn’t give up my room for him. I did it for me. I can’t bear to be away from that green screen. I’m not sure I can take the hard much longer. Things inside me, inside my head, are beginning to snap and I don’t want to think about them.

  The nurse comes at eleven. She is a strange creature, this Macmillan nurse. Everything about her is a whisper, as if she only comes alive in the night and even then not in a way any ordinary human would. Her cheekbones are high and fine and a wisp of dark hair has flown free from her bun. She is young, younger than me. Her feet barely make a sound as she glides up the stairs. I explain to her where the tea and coffee is and that I’m sleeping in the lounge and then I tell her about your agitations. She smiles serenely as if she has it all under control and then she settles into the chair in the hallway and opens her book. I don’t see what it is she’s reading, but it’s a thick text and the writing is small. I watch her for a second before going back downstairs. I think maybe she is the angel of death in disguise.