Joe turns away to pour, and I can see his hands trembling as he picks up the delicate china milk jug. He glances towards me, checking. I try a smile and tell him I like a big slosh of milk, if he can spare it. He carries on with his task, pouring weak tea for me, medium for himself, and stirring the pot to get a strong mash for Nelly.
‘Biscuits, Joe?’ Nelly prompts him. ‘There should be shortbread in the tin.’
‘But…’ Joe doesn’t want to leave us alone again, but she raises an imperious eyebrow and he leaves the room.
‘Put them on a nice plate!’ she commands as he exits. As soon as she can hear his feet going downstairs, Nelly leans forward over her beachball tummy and says, ‘What can I do? How do I tell him?’
It is heart-wrenching to realise how each member of this loving, tender-hearted couple is living a lonely lie in an attempt to save their beloved from distress. The deliberate silence between them is growing as surely as Nelly’s cancer, and they may never have a chance to say goodbye unless the deadlock is broken.
‘Nelly, what’s the worst thing you have ever had to deal with together?’ I ask her.
She answers immediately, yet with slow reflection, as though unwilling to hear her own words. ‘When our son was killed down the pit. He was seventeen… just seventeen. There was an explosion. Three dead. Broke Joe’s heart… and mine. We only got through by talking. Talking and talking. Saying his name… Kevin. No one uses his name any more…’
Joe has appeared in the doorway, unnoticed by us as I lean over the bed to catch her softly spoken memories. He sits on the bed, his back to me, and reaches for her hand.
‘What’s brought this on, pet?’ he asks gently, his other hand cupping her cheek and wiping away a tear. She shakes her head sadly and looks down at the bed.
‘Joe, Nelly is telling me about your wonderful marriage, and what great partners you are. That you are a wonderful husband, and that together you are a great team.’ Joe turns to look at me. Nelly’s eyes are fixed on his profile. ‘Nelly was telling me that the only way you both got through the heartbreak of Kevin’s death was by talking to each other. Over and over.’
Joe looks back to Nelly, who holds his gaze as I say, ‘And Nelly thinks she needs to share the tough parts of this illness with you in the same way, don’t you, Nelly?’
Nelly nods, gaze locked onto Joe’s.
‘Nelly, Joe, I’ve learned so much about you in such a short time,’ I continue. My mouth feels dry, my tongue is clicking as I speak. There is so much at stake here, and I want desperately not to make anything worse. ‘You love each other so much, and you both want to prevent this illness from making each other sad. You’ve both told me that.’
Joe draws breath to speak, but Nelly says, ‘Listen, love. Just listen.’ She is giving me permission to continue.
‘Nelly, you told me that you’re getting weaker and weaker, and you’re worried that you might not get better.’ Joe’s eyebrows shoot upwards and he blinks at her. ‘Joe, you told me that you are so worried about Nelly, but you don’t discuss her illness in case you upset her.’ It is Nelly’s turn to look surprised.
‘So it seems to me that, although Nelly is the person who is ill, both of you are suffering’–I emphasise the word slightly–‘suffering from this illness. And each of you is suffering alone. Nelly is upstairs, worrying about Joe. And Joe is downstairs, worrying about Nelly… I wonder whether you might bear the suffering better if you could talk about what is going on.’
Nelly gazes at Joe. He moves backwards slightly, as though fearful of what she might say. Nelly, though, is now a woman on a mission. This is her moment.
‘I’m dying, Joe,’ she tells him simply, and he drops his head and begins to sob. ‘I’m dying, and we both know I am.’
‘Shush, Nell, no! We can beat this!’ he sobs, but she gathers up his hands in hers and says, ‘Joe, it’s cancer. They told me in the hospital. I just didn’t know how to tell you.’
‘You knew?’ he asks wonderingly. ‘You knew all the time?’
‘I did, pet,’ she says, and he pulls her hands to his lips and weeps.
‘I thought I was the only one that knew,’ he sobs, ‘and I’m watching you fade away. Oh, Nell. My little Nelly.’ He is rocking backwards and forwards, crying and kissing her fingers.
Quietly, I rise from my chair and edge around the bed. I collect the tea tray and slip out of the room, picking my steps carefully down the steep stairs with their precious china. They don’t need me in there. I will find my way to the tiny kitchen to fill the whistling kettle, and brew up tea-with-sympathy, as I learned to do long ago as an apprentice to Sister of the Gilded China Cups.
Every Breath You Take (I’ll be Watching You)
The process of dying is recognisable. There are clear stages, a predictable sequence of events. In the generations of humanity before dying was hijacked into hospitals, the process was common knowledge and had been seen many times by anyone who lived into their thirties or forties. Most communities relied on local wise women to support patient and family during and after a death, much as they did (and still do) during and after a birth. The art of dying has become a forgotten wisdom, but every deathbed is an opportunity to restore that wisdom to those who will live, to benefit from it as they face other deaths in the future, including their own.
‘Can you come now?’ asks the staff nurse on a ward we know well, sounding somewhat desperate. They are an excellent ward team, and the palliative care team always enjoys working alongside them. She has rung our office because she is concerned that a war is about to break out around the bed of a very poorly patient. The patient, Patricia, has been dying of heart failure for several weeks–initially awake but unable to move far from her bed because of breathlessness and heavy, swollen legs; later, cheerfully bedbound and receiving visitors weighed down with chocolate and fruit (both forbidden by her heart-and-kidney-failure diet, which she simply ignores). Latterly, sleeping for much of the day: the usual pattern, which has been explained to her huge and loving family, who have repeated it frequently to each other like a mantra, as though to calibrate progress as the matriarch approaches death. She has been attended by three daughters, two sons, a bevy of teenage grandchildren–but everyone has been wondering when ‘Our Billy’ will visit.
Today ‘Our Billy’ has arrived. Yesterday the ward consultant discussed his mother’s status with the governor of the high-security prison where Our Billy is currently detained at Her Majesty’s pleasure. The governor agreed that Billy could visit his mother, whose life expectancy would appear to be only days at most. Billy has arrived with his wrists chained to two warders. This suggests that he might wander off, or do harm, if unattended and unshackled. I have found it best not to know the reason for the detention of prisoners, whether patient or family; it is simpler to meet as human being to human being at this already difficult time.
It seems that Our Billy is not happy with his mother’s care. Not at all happy. He wants to know when she will wake up; he wants to know why she has been given ‘a slug of something’ to make her so sleepy; he wants to know when did British hospitals start treating old women worse than animals. Not happy. This ward team is more than capable of dealing with unhappy relatives, even those in chains attached to guards. There must be another dimension to this problem. Sonia, our hospital palliative care lead nurse, heads up to the ward to investigate.
She finds a ward in turmoil. All the nurses are upset. One of the junior doctors is weeping in the doctors’ office. The cleaners have just informed Sister that they will only work in Patricia’s room in pairs. Sister invites Sonia into her office and closes the door. She explains that ‘Our Billy’ is the youngest of Patricia’s six children, and has always been regarded as her favourite. His sisters describe him as ‘spoilt rotten’, and his first prison sentence, for–‘Don’t tell me, it’s better not to know,’ Sonia interrupts–so Sister continues her story by saying that Billy has been in trouble with the law all his adult life. His c
urrent sentence is in a high-security prison, implying a firearms offence or grievous bodily harm, at least. His sisters are furious with him, and Patricia is now too close to death to realise that Billy is here, for which he blames them, saying they left it too late, they have had Mum sedated, they just wanted to get their own back.
Billy’s angry and unpleasant comments have upset the cleaners, he has made personal threats against the nurses, and he has told the young doctor that she is ‘rubbish’. The distressed daughters have asked the doctor to give Patricia something ‘to wake Mum up so she knows Our Billy is here’. This is not a response to his bullying, but born of their love for their mother, who has missed Our Billy so much. But Patricia is not under sedation, she is simply dying. There is no sedative to reverse. It is the daughters’ compassion for their mother and brother, and not Billy’s arrogant swaggering, that has reduced the doctor to tears.
Sonia and Sister enter Patricia’s room. She is lying on her side, her back to the door, with the head of the bed tilted upright to reduce the waterlogging of her lungs caused by her heart’s failure to push blood around her system with any efficiency. She is breathing deeply and slowly, and there is a rattling, bubbling sound with each in-breath and out-breath. Her lips are dusky. Sister introduces Sonia to Carly, the daughter on current Mum-watch, and to Billy, who is sitting between his warders. Sonia greets them all, then moves to the bed and walks around it to Patricia’s head.
‘Hello, Patricia, I’m Sonia,’ she announces, close to Patricia’s ear. ‘I’m here with Carly and Billy. Can you open your eyes?’
‘You daft woman,’ sneers Billy. ‘Don’t you know sedated to death when you see it?’
Sonia ignores him. She watches Patricia’s breathing, and measures her pulse. Her breathing is becoming faster and more shallow, but is still bubbling and rattling.
Sonia turns to Carly, Billy and the warders. To everyone’s surprise, she addresses the warders first.
‘Do you have to use wrist restraints?’ she asks them. ‘How’s the man supposed to cuddle his mum with those on? Does he look like a man in a hurry to leave?’ Billy looks startled, and then grudgingly impressed. The warders have a discussion, and decide that the handcuffs and chain can be removed. Billy rubs his wrists in wonder, then stands up. Both warders leap to their feet, but Billy walks slowly towards his mum. He is crying.
Sonia asks the warders to take a seat outside the room. There is only one exit, Billy is safe in here, and he needs some privacy. ‘I am the nurse in charge, and I know that I can request this.’ Sonia can be magnificent when required, and this is just such an occasion. The ward sister agrees, and Carly gives Billy a thumbs-up sign. The warders leave the room, and Sonia thanks them with genuine warmth as they depart, assuring them that she will take personal responsibility for Billy while he is in the room. She looks at him and says, ‘Don’t you make me regret this, Billy.’ Billy is speechless.
The two senior nurses now turn their attention to their patient. They decide to move Patricia’s position in bed, to see if that will reduce the bubbling noise in her breath. With gentle, expert hands they roll her onto her back, ease her upright, adjust and plump her pillows, and slowly lower her down again. They describe aloud what they are doing, talking to Patricia throughout the procedure. Still deeply unconscious, but semi-sitting in bed and supported by pillows under each arm, she is now breathing with slow, gulping breaths, but there is less bubbling.
Sonia rearranges the chairs so that Carly and Billy are sitting on either side of Patricia, each able to hold a hand. Billy tries to lace his fingers between his mum’s while Carly strokes her arm.
Sister departs, and Sonia speaks to the family. ‘Can you hear how the pattern of her breathing is changing between fast and panting, then slow and snorey?’ Billy and Carly look at Patricia, then Carly says that this has been the pattern for a couple of days.
‘It’s a sign of being deeply unconscious,’ says Sonia. ‘It means your mum is in a coma. Do you know what I mean?’
Billy tugs at Patricia’s fingers. He bites his lip and nods. ‘Like a head injury?’ he asks.
‘Exactly the same process, Billy, but this isn’t because of an injury, it’s what happens to us all as our brain shuts down. As we’re reaching the end of our life.’
She pauses. The room is silent apart from the grunting of Patricia’s breathing. No more bubbling.
‘We know from people with head injuries who get better,’ says Sonia, treading carefully, ‘that even deeply unconscious people are aware of the sounds around them. They hear our voices–your voices. Hearing the right voice can make an agitated person calm; hearing a voice they don’t like can make people more agitated. That’s why the nurses talk to your mum when they’re caring for her. We know she’s deeply unconscious, but we want to treat her with respect and dignity just the same.’
Billy looks thoughtful. Then he takes a deep breath, and howls, ‘Mam, it’s me, Billy! I’m here, Mam! I’m here… I love you, Mam! I do love you. I’m so sorry…’ His sobbing prevents him from continuing.
‘That’s it, Billy, that’s exactly the right thing to do. Just keep talking. Talk to her. Talk to each other. Just let her hear your voices.’
Next, Sonia turns her attention to the implications of Patricia’s breathing pattern. This is ‘periodic breathing’, and is a sign that the end of life is approaching.
‘Carly, where is the rest of the family?’ Sonia asks, and Carly explains that because their mum has been so ill for so long, they have been running a rota to make sure someone is always with her, but that everybody gets enough rest too. Sonia says that this is a wise plan, and it’s good to be working with a family that is caring for one another so well.
‘But I think the time is coming to get everyone together, Carly, because… Listen. Do you hear the long pauses your mum is taking in her breathing from time to time?’
Everyone listens: there is no sound of breathing from Patricia for five seconds, ten seconds, nearly twenty seconds… Sonia is on the brink of deciding that Patricia has died, when with a deep, shuddering breath the fast, shallow panting starts all over again.
‘This will be the breathing pattern now,’ Sonia explains. ‘Fast at first, then slower and slower, then a long pause, and then the pattern starts again.’ Carly and Billy nod, turning from Patricia to Sonia and then back to their silent mother. ‘And one of the times that she’s breathing very slowly,’ Sonia continues, clear and careful now with this important message, ‘she will breathe out, and then just not breathe in again. As gentle as that. And maybe quite soon.’ She pauses to be sure they have taken this in, then asks, ‘So shall we call the others in?’
Already Sonia can see that Patricia’s breathing is gentler. The muscles in her face have relaxed so much that her mouth is open. Time is getting short. Knowing that she is guarantor for Billy, Sonia cannot leave the room, so she presses the nurse call button. Sister pops her head around the door.
‘We’re just discussing that time may be getting short, Sister,’ says Sonia. Her voice is calm, but the nurse-to-nurse communication is clear. ‘And Carly should really stay here, so can someone gather the rest of the family?’
Sister understands both the message and the urgency. ‘Shall I call Bella first, Carly, and ask her to let everyone know?’
‘Yes, tell Bella to tell Gabby, and then just come straight away. I’ll text the boys. Tell her I’ll do that,’ says Carly, flushing and reaching into her handbag for her mobile phone. ‘And Sister–tell them Our Billy’s here.’
Meanwhile, on a surgical ward in the next block, I am meeting another family around a different deathbed. The patient is Brendan, a middle-aged man who has widely spread cancer of the oesophagus. He is a self-employed carpenter, and although he has had escalating heartburn and a feeling of difficulty with swallowing for months, he has been too busy with work to see a doctor. Now the cancer has blown a hole into his chest from his oesophagus, one of his lungs has collapsed, he has gastr
ic juices in his chest cavity, and he is dying. Our team has been working to manage his chest pain and breathlessness, and today he has been awake and comfortable long enough to talk to his wife Maureen and to say prayers with the chaplain, who has been a great support to them.
I have come to the ward to meet Brendan’s brother Patrick, who has just arrived from Ireland. Brendan is lying peacefully unconscious in his bed. His breathing is shallow and slow when I arrive and greet Patrick, Brendan (because we always talk to unconscious people) and Maureen.
‘I just can’t believe it!’ Patrick protests, pacing at the bedside. ‘I was only just talking to him on the phone a few days ago, and now look at him! It beggars belief! Why aren’t you all doing something? He’s a young man! You can’t just let him die!’
I take a seat beside the bed. Somehow, sitting gives a message of solidarity, of being prepared to be really present, even if only for a while. I watch Patrick pacing, and see Maureen’s taut, stressed expression. It was generous of her to send for her emotional brother-in-law at this difficult time.
Maureen is a compassionate soul. She and I have spent the last few days discussing how she is preparing their teenage sons for the death of their father. She has been inspirational: she has broken the terrible news, brought them to visit him, helped them to tell him how much they love him, explained what will happen as he is dying just as I had explained it to her, and given them the choice about whether to be here or not. Today they are in school (she has even told the school, so her boys will have support), but a friend is on standby to bring them in at short notice if necessary. Time to address Uncle Paddy’s distress, before the boys arrive.
Brendan’s breathing changes again. He enters another period of deep, noisy breathing, and the saliva and secretions at the back of his throat rattle and bubble with every breath, in and out. Paddy pauses his pacing to listen, then shouts, ‘Would you listen to that, now? Listen to him! Groaning! He’s in agony!’
With the End in Mind Page 14
