With the End in Mind: Dying, Death and Wisdom in an Age of Denial

Holly agreed. ‘That puking was doing my head in. I couldn’t keep nothing down. But now I don’t feel sick I feel really kind of energetic.’

It seemed bizarre that this waif, glowing with the lemon tinge of kidney failure, her life ebbing like a fading echo, could describe herself as energetic. I asked her to hold her arms out in front of her and to close her eyes. Her arms twisted and danced before her, and she bounced her legs on the balls of her feet. When I took her hand and slowly flexed her arm at the elbow, I could feel the muscles tensing and releasing as though the joint was moved by cogwheels. Her gaze was unblinking in her doll-like face.

‘When did the sickness stop?’ I asked, although I already knew the answer: the day the nurses gave her a syringe-driver with anti-sickness medication for her kidney failure. The same day the restlessness began. Because the drugs that were stopping her nausea were also giving her this sense of driven restlessness: akathisia, or ‘inability to sit’. She was perceiving the sense of drivenness as ‘kind of energetic’, and it was this that had suddenly caused her to get out of bed and want to move around.

Here’s a dilemma. This young mother is close to the end of her life. Her kidney failure is so severe that many people would be unconscious at this stage, but the drug that has stopped her nausea and vomiting is also causing restlessness and a desire to get out and about. Her legs don’t have the strength to hold her up, and she is in a fifth-floor flat. I don’t want to stop the anti-sickness drug: her nausea would return very quickly. Yet she will exhaust her meagre energy reserves if she keeps pacing and dancing and cannot get some sleep.

There is a drug, an injection, that will reverse this restlessness and ceaseless drive to movement, without losing control of her nausea. We keep it in the hospice, and I can go back to get it. But in the meantime Holly is stir crazy, like a caged animal. How can we assuage her desire to be on the move?

‘Do you have a wheelchair?’ I ask. No, Holly was well enough to get up and down the stairs until two weeks ago. Then the pain kept her indoors. Then when the pain was better she was exhausted by her nausea.

‘Sally downstairs has got a wheelchair,’ chimes a voice from the doorway. Amy has been listening in. She is dressed now, in black tights and a neon-yellow T-shirt, stripy yellow-and-black leg-warmers and an army beret. ‘We can borrow it. Where are you taking her?’

‘I’m not taking her anywhere. I’m going back to the hospice to get another medicine to help with this restlessness. But while she’s so restless and desperate to get out, I wondered if you’d like to take her out and around the shopping arcade down the road. Just for a change of scenery.’

Nan looks startled. Amy shouts, ‘I’m going to ask Sally!’ and leaves. Holly looks gratefully at me, and says, ‘Well, I never expected that! Thanks, doc. They keep mollycoddling me, and getting out will be brilliant …’

After a couple of minutes, Amy taps on the window. She is on the balcony corridor with a wheelchair and two huge men in black leather jackets.

‘Tony and Barry will carry her down, and we’ll go round the shops!’ she exclaims gleefully.

‘Wait – there’s no lift?’ I ask, but there’s no point – the seed is sown, the wheelchair borrowed, and Nan is already on the phone to Holly’s sister to arrange to meet her at the shops. And I’m not about to contradict Tony and Barry, who are Sally Downstairs’s sons. They are on a mission. And they are massive – only their enthusiastic smiles are wider than their huge shoulders.

I head back to the hospice, and phone the leader. I describe the scenario – the petite patient so frail, with advanced kidney failure; weaker day by day until this sudden flush of ‘false energy’ caused by the anti-sickness drug; my diagnosis of akathisia and my plan to treat it. After asking a few questions he seems satisfied by my examination and conclusions. He asks whether I’d like him to come with me to give the antidote and make the next plans, and although I want to be able to cope on my own, a mental picture of the smoke-stained room, the tiny dancing patient and the gigantic, leather-clad neighbours makes me glad to accept the offer. He drives to the hospice while the nurses help me to gather the drugs and equipment I will need.

The second trip to the riverside feels different. The mist has cleared away, and the afternoon is lengthening into early evening. Nightingale Gardens is in sunshine as we park outside, and there seems to be a party going on outside one of the ground-floor flats. Looking closer, I recognise Barry and Tony, the neon glow of Amy’s T-shirt, and Holly in the wheelchair wearing a fluffy bright pink dressing gown and a knitted hat. Nan has her back to us in the NCB donkey jacket, and an older woman whom I take to be Sally Downstairs is sitting in an armchair on the pavement. Cans of beer are being drunk; there is laughter; people come and go from the flat. When the leader and I approach, we are waved over and greeted like family.

‘Here’s the lass what sent us to the shops!’ shouts Holly, and shows me her newly manicured fingernails, a treat from her sister.

‘Bugger of a job keeping her bloody hands still!’ laughs Nan.

They have had a wonderful trip out: Holly has loved meeting and greeting friends and neighbours she has not seen for weeks, and all have admired her grit in getting out. She has bought a massive carton of cigarettes, a crate of beer and lots of crisps, and these are now being shared at the impromptu pavement party.

I explain that we need to check her syringe-driver and then give her a small dose of the antidote, to be sure it doesn’t disagree with her before giving a larger dose to last overnight. We need to go up to her flat. Barry and Tony lift the wheelchair as easily as though it is a shopping bag, and carry Holly upstairs to the fifth-floor landing. Nan lets us in, and goes to put the kettle on; Holly’s sister and Amy follow. I introduce the leader, and he examines Holly’s arm movements to satisfy himself about the diagnosis. Tea mugs are produced for the workers, everyone else continues to drink beer. Holly knows she must stick to small volumes of fluids, so she drinks her beer from a dainty china teacup.

I wash my hands in the kitchen to prepare to give the antidote injection. Someone has tidied the flat since earlier today, and all the surfaces are gleaming. Then I insert a tiny needle under the loose skin of Holly’s forearm, and give the first small dose. Conversation continues around the room; Barry and Tony depart with their mum’s wheelchair; Nan and Amy settle into armchairs while Holly’s sister, Poppy, sits beside me on the sofa, from where we watch Holly threading her restless way around the room, the leader beside her in case she falls. She is still describing the fun of her afternoon.

Eventually she takes a seat on the sofa beside her sister. She fidgets, but remains sitting. She gradually stops talking, and listens to the chatter around her. I can see the leader watching her intently.

‘Are you sleepy, Holly?’ he asks gently. She nods. Poppy and I make space for her to lie on the sofa, but she twists and turns. She is too frail to get upstairs to bed, so Amy, always the practical one, brings down the rolled-up mattress she uses when friends sleep over. Nan and Poppy make up a bed, and Holly lies down. Her eyes are closing.

‘How are you feeling now, Holly?’ asks the leader.

No reply. Holly snores gently, and Amy laughs, but Nan leans forward and says, ‘Holly? Holly?!’ She is afraid.

The leader sits on the floor beside the mattress and takes Holly’s pulse. She is lying completely still now, breathing gently and occasionally snoring. The leader looks up at us all, and says, ‘Can you see how she is changing?’ And she is. She is becoming smaller. Her energy is gone, and the weariness that has been creeping up on her for the last couple of weeks is now overwhelming her.

Nan reaches for Holly’s hand, and says, ‘Amy, get your sister.’

Amy looks perplexed. Her sister is at a friend’s house for the weekend. She won’t want to be disturbed. Amy has not understood what is happening here.

‘Amy,’ I say, ‘I think your mum is so very tired that she may not wake up again.’

Amy’s mouth drops open. Her eyes dance between her mother, the leader taking her pulse, her Nan, and my face. ‘It wasn’t what she did today that tired her out,’ I say. ‘What you helped her to do today was fantastic. But she was already exhausted before her busy night last night, wasn’t she?’

Amy’s wide-eyed stare makes her look very like her mum as she nods in agreement. ‘And that exhaustion is caused by her illness, not by how busy she’s been today,’ I explain. ‘But if your sister wants to be here for her mum, then now is the time to come.’

Amy swallows and gets to her feet. She picks up a notebook and begins to look for a phone number.

‘Give it to me,’ says Nan. ‘I’ll phone.’

Amy silently points out the number, and Nan moves across to the window ledge, where the phone sits beside the cassette player. She dials. We hear the buzzing drone of the ring; we hear a voice answer the phone; then Nan gives her message as Holly opens her eyes and says, ‘Why am I lying down here?’

‘Too drunk to get to bed again,’ says Poppy, trying to smile but with tears running down her nose.

‘Don’t cry, Poppy,’ says Holly. ‘I’m OK. I’m just so tired. But haven’t we had a lovely day?’ She wriggles herself into the eiderdown and says, ‘Where’s my girls?’

‘I’m here, Mam,’ says Amy, ‘and Tanya’s on her way.’

‘Come and snuggle down with me,’ smiles Holly. Amy looks up at us. The leader moves back to leave space and nods at her. Amy lies down alongside her mum, and hugs her.

The front door bangs open, and a girl shoots through it.

‘Mam? Mam! Is she here? Where is she? Nan? Nan! What’s happening?’

Nan walks over and hugs her, then draws her across the room, saying, ‘She’s here, Tanya, she’s here. She’s so tired we’ve made her a camp bed. These are the doctors. Mam’s OK, but she’s very tired, and she wants a cuddle.’

Tanya kneels on the floor by her mother’s head, and Amy reaches up to take her hand, drawing it down to touch their mother’s cheek.

‘Here’s Tanny, Mam,’ she says. Holly puts her hand over the girls’ hands, and sighs.

Over the next half-hour, the light fades outside and the room becomes dark. No one moves. We sit in the semi-dark, an orange glow lighting the room from the streetlamps outside. Every now and then, the leader gives a quiet commentary.

‘Look how peacefully she’s sleeping.’

‘Can you hear how her breathing has changed? It’s not so deep now, is it?’

‘Have you noticed that she stops breathing from time to time? That tells me that she is unconscious, very deeply relaxed … This is what the very end of life is like. Just very quiet and peaceful. I don’t expect she will wake up again now. She is very comfortable and peaceful.’

And then Holly’s breathing becomes too gentle to float a feather.

And then it stops.

The family are so mesmerised by the peace in the room that no one seems to notice.

Then Nan whispers, ‘Is she still breathing?’

The girls sit up and look at Holly’s face.