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.
The stories in this section have been chosen to illustrate the gradual, predictable sequence of events as we die that used to be familiar before medicine progressed and dying at home became more unusual. Knowing what to expect is immensely comforting to the dying person and their supporters. Once we all know what we need to know, we can relax with each other. It’s surprising how relaxed a well-prepared family can be around a deathbed.
Have you ever been with somebody while they died? How does what you saw match the patterns described in these stories? Is the description of dying what you were expecting? In what ways does this information affect your view about the experience of dying? How well do you think TV dramas, soaps and films deal with dying and death? Do they help us to be better prepared, or does drama displace reality?
When you are dying, where would you like to be? What are the pros and cons of being at home in your own bed (perhaps moved to a more accessible room), or staying with a relative or friend, or in hospital, or in a care home, or in a hospice?
If you have seen a death that appeared uncomfortable or shocking, how have you dealt with that memory? What information in what you have read in this section could allow you to re-evaluate what you experienced?
If you regularly have upsetting memories of a difficult situation, whether it is a death or something else, and especially if the experience still feels as though it is happening again there and then, this suggests that your experience may be causing post-traumatic stress disorder (PTSD). Your doctor can help. Please don’t suffer more than you