Читать книгу With the End in Mind: Dying, Death and Wisdom in an Age of Denial - Kathryn Mannix, Kathryn Mannix - Страница 13

The vigil around a deathbed is a common sight in palliative care. In some families it is peaceful; in some there are rotas and care-for-the-carers as well as care for the dying; in some there is vying for position – most bereaved, most loved, most needed, most forgiven; in many there is laughter, chatter and reminiscence; others are quieter, sadder, more tearful; in some there is only a solitary sitter; occasionally it is we staff who keep the vigil, because our patient has no one else. So I had seen it many times before I had the perspective-changing experience of sitting at the bedside of someone I loved dearly, and would miss greatly, for the first time.

Well, this is unexpected.

The room is dark. A nightlight above the door casts a dim glow over the four beds and their sleeping occupants. Occasional muttered mumbles or stertorous snores from the other three beds emphasise the silence of the white-haired woman in the bed before me. I am perched on the edge of my chair, gazing at the pale face on the pillow, her eyes closed, her lips moving gently with each breath in and nostrils flaring briefly with each breath out.

I am searching her face for clues. A slight flicker of an eyebrow movement – is she wakening? Is she in pain? Is she trying to speak? But the metronome of the breath in, breath out continues unflurried. Unconscious; unaware; untroubled.

This is my grandmother. She is nearly one hundred years old. She has seen wonders in a lifetime lived in step with the twentieth century: as a girl, she watched as the lamplighter lit the gas lamps outside her home, and admired the dresses and evening capes as her neighbours boarded horse-drawn hansom cabs for a night on the town; as a teenager, she saw her brother falsify his papers to be allowed to fight in France, and welcomed home the hollow remnant of him that returned, twitchy and restless, after six months as a prisoner of war carrying German shells to their front line; as a young wife she saw the Great Depression, the death of one son from a disease now prevented by routine infant immunisation provided by the National Health Service, and later the death of her husband from an infection now treated simply by antibiotics that had yet to be invented then; she accompanied her remaining children into evacuation in the countryside during the Second World War, working in a munitions factory where the women on the production line twisted the detonator wires of occasional bombs in the hope that civilian lives in Germany would be spared; and then returned to her inner-city home through which an unexploded German incendiary bomb had dropped, its own detonator inactive thanks to unknown sisters in Germany. She saw the birth of the NHS; her children had access to higher education; she watched men walk on the moon. She is the matriarch of a family that now counts four living generations. And she is dying.

She draws a sharp breath in, and mutters on the out-breath.

‘Nana? It’s all right, Nana. We’re taking you home tomorrow. You can sleep now. The rest of us are here.’

I listen. I mean I really, really listen. Are there words in the muttering? Is she dreaming? Is she awake? Is she afraid?

The monotonous rhythm of unconscious breathing returns. I sit and gaze, searching for clues in this dear, familiar face.

I have seen families keeping this watch, maintaining this searching vigil, many times. I have been working in palliative care now for eleven years, watching deathbeds on a daily basis. How can I have been so unaware of the deep, analytic attention of the families who sit and wait? This is not a passive activity; I am actively, keenly alert, probing her face for clues, interrogating every breath for evidence of – what? Discomfort? Contentment? Pain? Satisfaction? Serenity? This is the vigil, and suddenly I am encountering its familiar pattern of gathered family, and sitting rotas, and detailed reporting of almost no information, from an utterly new and unexpected perspective.

I happen to be in my home city to deliver a lecture. I was delighted to accept the invitation, because it would give me a chance to stay with my parents and to visit other family members. Then, while I was on my way here a few days ago, the family called from the hospital to ask me to divert my journey. Instead of sharing a meal at my parents’ home, we assembled in a cubicle in the city hospital’s emergency department around Nana’s uncomplaining smile. Here, her back pain was assessed, her large but unsuspected colon cancer was finally identified, a bed was found in this bay, and once I had managed to convince the shiny, newly qualified ward doctor that painkillers would be appropriate, the hospital’s palliative care team arrived to give their expert and welcome advice, so that I could be simply one of her grand­­­children.

The next day, we palliative care professionals met again at the conference they had invited me to address. I stepped out of ‘family anxiety’ and into ‘conference speaker’ mode for two welcome hours of respite from my sadness, leaving a small posse of the family with Nana. The speaker after me was a social worker whose moving talk about bereaved families pierced my armour; I paused in the ladies’ cloakroom to remove the mascara stains from my cheeks, and rushed back to the hospital. The posse reports that Nana has had ‘tests’. She has widespread cancer. She wants to return to her nursing home, because it has a chapel and being close to God is her top priority. She is not alarmed – she has been preparing to die for decades, and has astonished herself with her own longevity, the solitary survivor of her generation and lonely for beloved people she has not seen for many years.

The news of the cancer had an interesting effect on Nana: almost as though she had been waiting to know what would bring about her eventual death, she seemed so relaxed that several family members wondered whether she had really understood the news. But this is the wisdom of a long life: none of us is immortal, and every day brings us closer to our last. In her eighties, Nana had a stroke that affected her use of language. She lost words, and substituted others in ways that sometimes made her speech impenetrable, and on other occasions was unintentionally wildly comical. Her mobility became limited too. She accepted these burdens with determined stoicism. In retrospect, I suppose she expected that another, fatal stroke would rescue her from living a limited life, but here she is more than a decade later, still talking to us about sausages and ‘You know, that … whatever …’ with a roll of the eyes that says, ‘Mm-hm! You know exactly what I mean!’ while we cast around for ways in which ‘sausages and something else’ might be relevant to the conversation about, for example, her new duvet cover or what she would like to send her great-niece for her new baby.

So now she knows. Not another stroke, but cancer. Painful pressure on her pelvic nerves has been giving her a pain ‘down there’ (rolls eyes) that she didn’t like to mention. She has been losing weight, and off her dinners a bit, but not enough to cause any alarm. When the palliative care team’s recommendations for the nerve-compression pain are effective, she is quietly pleased. ‘That was like a …’ – rolls eyes – ‘a …’ – eyes indicate ‘down there’ – ‘Polaroid,’ she explains, and while my aunt looks perplexed, my sister remains heroically straight-faced as she says, ‘Yes, Nan, like a haemorrhoid.’ The rest of us rummage in bags and pockets to avoid catching each other’s eyes and creasing with inappropriate laughter.

So, because I am here and I may not get another chance, I am in the watching rota. Last night I slept in my childhood bedroom in my parents’ house, and no one was on watch because Nana seemed comfortable and rested. But today, suddenly, she has begun to change. Sleepy and awake by turns; too weary to eat; accepting occasional sips of fluid; asking for the Pope. The priest came to visit; she was delighted. Fancy the Pope coming so quickly! Goodness knows how that conversation went, but she seemed very peaceful afterwards.

By evening it was clear that, her burdens laid down, Nana was preparing to die. A visitor from her nursing home, a diminutive and very experienced nursing nun, spotted the signs and asked her where she wanted to spend her last days – no beating about the bush. Nana wanted to ‘get home’, and the knee-high nun said they would expect her home tomorrow. The ward staff agreed to make the transfer arrangements. Nana smiled and slept and slipped into a coma. All things I have seen many, many times, yet never really seen at all.

And that is how I come to be perched on the edge of this chair in the darkness, searching the face and the sounds of my frail and failing grandmother. Suddenly she opens her eyes and says, ‘You should be … not here … asleep …’ Almost a sensible sentence. I touch her cheek, and notice that her nose is cool at the tip.

‘Nana, you have walked the floor at night for all of us. Now it’s our turn. Just sleep. I’m comfy here, and it’s lovely to be with you …’ And she smiles, a gummy benediction of a smile that brings tears to my eyes. ‘Mum and Auntie have gone for a cup of tea. They’ll be back soon. Can I get you anything?’

She shakes her head and closes her eyes. From out of nowhere, the sound of Brahms’ lullaby floats into my mind, its halting waltz-time reinterpreted as a bedtime lullaby sung to each of her thirteen grandchildren in our turn (and probably to our parents before us, too) in Nana’s deep, cracked yet soothing voice. Here, at the edge of her dying, I contemplate the meagre understanding I have of her long and often troubled life, and the intimate knowledge that she has of mine. She is a remarkable woman, yet I hardly know her. She modelled self-reliance and resilience to my mother and her siblings, and to her eight granddaughters and five grandsons. Before she became unable to converse with fluency, she was a confidante of our woes and transgressions, an adviser in anxieties and a source of solace in times of trouble. She knows us inside-out, but she said so little about herself; and we self-absorbed youngsters never thought to ask.

How many people attending a deathbed must realise these truths, as they see a future they had taken for granted slipping away from them, a much-loved person slowly descending through the layers of consciousness towards coma and death? No wonder there are fantasies about swansongs, in which people linger for a last word, a deep revelation, a declaration that all will be well.

Nana’s breathing is soft now, panting and shallow. How many times have I described periodic breathing to families, to medical students, to patients themselves? And yet, it never sounded like this before. This sounds like someone who has run a long way, who is breathless, who is anxious. But her face is serene, her brow unfurrowed, and her pulse (I feel her wrist) is steady, regular and sedate – and I notice that, like her nose, her hand is cold. I tuck it beneath the crocheted shawl Auntie brought from home earlier today, as though in some way I can warm it into life. My professional self is satisfied that she is not in distress, yet I am poised and alert, like a security officer guarding an at-risk target. All my senses are primed to spot the least disquiet.

The shallow breathing pauses. I hold my own breath – Oh no, please don’t die when they’ve gone for a tea break. And then she takes a huge, snorey breath, and that other pattern of periodic breathing begins, slow and deep and noisy. I think of the number of times families have asked me if the sound indicates distress, and I have wondered why they mistake snoring for intentional vocalisation; yet here I am, listening intently for any suggestion of an edge of perturbation to that well-known, sonorous boom of a snore that kept me awake at night whenever she came to stay when I was a child. Slowly, as I know it will, this automatic breathing gets faster and shallower, and then so shallow that I can’t hear it, while I scan every breath, and watch her face, and search for any suggestion of a waggling toe or a tiny hand movement that may suggest that she is trying to make contact one last time.

The next twenty minutes pass in this way before Mum and Auntie reappear with a paper cup of orange hospital tea for me. I feel as though I have been alone here for an eternity, watching and evaluating my comatose grandmother, searching for meanings and discarding them again. We are past the point of communicating; the loss weighs like a heavy stone in my chest. I offer to stay the night, but Auntie will not hear of it – the night shift is hers, and tomorrow I have a long train journey back to my small children and my busy job and my kind husband. I know that I will not see Nana again.

In fact, getting home perked Nana up immensely, and we did see her the next weekend, propped up on pillows, pale and diminished yet delighted to see us all. Between long snoozes she enjoyed short conversations.

I was not there when she gave the last out-breath the following week. But I had learned the lessons of the vigil, and through the kindness of the natural order – watching a grandparent’s death. Since then there have been other vigils, with the same intensity of active watching and exhausting focus, and with sadness at the untimeliness of deaths before their right time (as though there is a right time), but also with recognition and appreciation of the last lesson I learned at my grandmother’s knee.

Now that I understand how minutely attentive to detail the watchers are, how active and probing their attention is, how exhausting the responsibility feels, I am a better servant to their needs and questions, and so much more patient with their frequent requests to check for any sign of discomfort or distress. This last vigil is a place of accountability, a dawning realisation of the true value of the life that is about to end; a place of watching and listening; a time to contemplate what connects us, and how the approaching separation will change our own lives forever.

How intently we serve, who only sit and wait.