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

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.

Pause for Thought: Patterns (#ulink_2a9adb8b-a218-5017-92ad-ac16173a5b30)

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 need to – ask for advice. There are some useful suggestions in the Resources section at the end of this book.

My Way (#ulink_40c18eea-37fe-57e2-9139-74512931eea7)

Human beings are highly resilient. We adapt to adversity, and find ways to maintain our inner peace as best we can. Often, we use coping patterns that we developed very early in life: if you’ve always ‘put on a brave face’, then that becomes your preferred way, and you may find it difficult to understand someone who copes by sharing their distress out loud. Neither you nor the other person is coping better or being braver than the other; one simply finds inner peace by venting, whereas the other’s peace comes from feeling self-contained. If you are a ‘take control and plan the details’ person, it can be tough for both of you if you are sharing a distressing situation with a person who copes by thinking about everything except the challenge ahead: one person’s avoidance is in direct conflict with the other’s need to plan, and this is stressful for both of them. Finding middle ground on which to meet and work together requires sensitivity, tact and patience, and perhaps even the help of a trusted third party.

The next few stories offer some insights into the widely different strategies people use, often completely spontaneously and without any insight into their own behaviour. You may recognise types of people you know very well – you may even recognise your own style.

Everybody prefers to manage things ‘my way’. The end of life is no different.

That is the Question … (#ulink_507f6d60-9bb0-51d6-b128-ee3b08489be4)

The strength of the human spirit is astonishing. People all think that they have a limit, beyond which they cannot endure. Their capacity to adapt and to reset their limits has been a constant wonder to me over my decades in working with people living with some of the most challenging illnesses imaginable.

Eric was a Head Teacher. With capital letters. He was an organiser, a man who Got Things Done. He managed a large inner-city comprehensive school, and ‘his kids’ knew that he would support them through any challenge, whether by telephoning the deans of their university faculties or by attending their interviews under caution at police stations.

Being a head teacher demands a lot of one’s time. Over his career, Eric (and his family) had made this sacrifice, and he was looking forward to spending much more time with his children and grandchildren when he retired. Developing motor neurone disease was not part of his plan.

His illness presented itself slowly. He caught his toes from time to time while running on a treadmill, but when he fell off the treadmill completely, his GP found some odd reflexes in his legs and sent Eric to hospital to check he hadn’t damaged his back. The spinal surgeons said his back was fine, but he had three years or less to live. Those ‘odd reflexes’ and occasional trips were the first signs of a creeping paralysis of all his muscles as they gradually lost their instructions from the nerves that connect them to the spine and brain. This is MND.

Remember, Eric was a head teacher: he got things done. Naturally, he looked up his illness on the internet. The news, delivered on screen, in writing and with no pacing or pauses for thought, was horrifying. Eric decided that he would kill himself before he became a burden to his wife. He considered a variety of ways to do this. Should he fake an accident by driving into a motorway bridge support? Or could he use tablets? Perhaps a plastic bag? He got more information from the internet, and tried to imagine how and when he should act.

Faking an accident seemed his best plan, and he aimed to kill himself before the grandchildren could notice his illness. He hated the idea that they might consider him decrepit. If he accomplished his mission before the summer, then he judged that everyone would recover in time to take a special holiday at Christmas that he had booked, with gleeful anticipation, when he retired. Eric had a plan and a timeline. On a bright spring morning he set off in his car ‘to collect a parcel from the post office’, with the secret intention of killing himself. The next thing his wife knew was when he walked back into the house just a few minutes later and said, ‘I can’t manage the gearstick.’ Paralysis of his arms had begun, and his driving days were over. So much for Plan A.

Spring became summer, and Eric gradually lost the use of his arms and legs. He had an electric wheelchair that he used in the house and around the local streets. He played with his grandsons, who were thrilled with his wheelchair and covered it with Batmobile stickers. He was astonished that they were not at all daunted by his increasing immobility, and loved straightening his spectacles or helping him to blow his nose. Carers helped his wife to get him up and dressed in the mornings and back into bed at night; his daughter who lived nearby came with her sons after school each day to give her mother a chance to go shopping. Eric realised that committing suicide with tablets (Plan B) was likely to be impossible now that he was never alone.

So Eric, who had been a Head Teacher who Got Things Done, was now a man in a wheelchair who had things done to him. He had expected that he would hate this, that he would be a burden, and that he would rage against the indignity of immobility. But to his surprise, he found that he was still a man who could Get Things Done. The vegetable garden he had planned was tended by his wife and son, with Eric nearby as adviser (‘That’s not a weed, it’s a row of parsnips, you turnip!’), and they relished their outdoor time together. He designed a pot garden for herbs beside the kitchen door, and it was planted by his grandsons under his supervision. He played chess, read books, savoured a fine single malt.

Eric’s wife, Grace, was a great cook, and relishing his meals became Eric’s daily pleasure. By the summer, though, even this was a lengthy chore as the task of chewing and swallowing became more difficult. Along with eating problems, Eric had increasing difficulty with speech as his lips and tongue became weaker. He knew from his internet research that some people with his condition needed feeding tubes to keep them nourished. He decided that he would rather be dead than not eat ‘the way nature intended’, and wondered whether he could starve himself to death. This became Eric’s Plan C, although he didn’t yet have a start date.

At midsummer, Eric developed a new problem. In effect, he had delicious-dinner-related pneumonia, because his swallowing muscles no longer protected the top of his windpipe. Some of that lovingly prepared soft food had been silently sliding down into his lungs when he swallowed. He wondered about letting himself die of his chest infection, but because he was hot, breathless and uncomfortable he opted to have treatment. He was admitted to hospital for intravenous antibiotics.

I first met Eric that week. He wasn’t sure the palliative care team had anything to offer him. Weren’t we a bit useless? He explained his absolute opposition to a feeding tube. He explained his hope of an early death so that the family could recover and have a happy Christmas. He explained his belief that euthanasia would be a good treatment for him, and his frustration that it was forbidden by law. He explained his decision to stop eating as soon as he was sent home from hospital.

It was clear that this was a man who Got Things Done. If he decided to starve himself, he would succeed. So we discussed what help he might need to remain as comfortable and as in-charge as possible while he was dying. He said that he feared pressure ulcers on his skin (very sore and possibly smelly), and seeing his family in distress. And choking – he was pretty certain that his illness would end in an episode of choking. Taking his concerns one by one, we considered ways to address them.

Pressure ulcers are sores that break the skin open, usually where it is squeezed and stretched between a bone on the inside of the body and furniture or clothing on the outside. They can be very painful (think how much a single blister hurts in a tight shoe), and become more likely as a person loses the ability to shift their position on their mattress, and as they have less fat padding their skin. So Eric was right – I agreed that he was a sitting duck for pressure ulcers. This unfortunate pun was the first glimmer of humour in our relationship. His eyes twinkled and his lips twitched, and he gave a wheezy, weak laugh.

Potential ways to avoid pressure ulcers, I suggested, might be to keep him rotating on a rotisserie-type gadget not yet invented for humans, or to avoid malnutrition.

‘But,’ he countered, ‘if I avoid malnutrition, then I won’t be killing myself, will I?’ Movement of eyebrows suggests he has categorised me as ‘stupid as well as useless’.

‘Anyway,’ he continued, ‘if I eat, I’ll choke.’

‘So let’s think about choking,’ I say. ‘What do you mean by choking, exactly?’

The eyebrows are starting to look a bit cross, but he explains with great patience, as though I am a particularly dim pupil, that he means choking – when something gets stuck in your throat, and blocks it, and you can’t get it out, and you can’t breathe, and you die horribly in front of the very people you have dedicated your life to protecting … Tears suddenly spill down his cheeks.

And there it was, the very nub of Eric’s distress: not choking, in fact, but failure to fulfil his mission to protect. He protected the children of so many other families throughout his career, yet now he feels unable to protect his own. He can’t even induce his own death to safeguard their peace of mind.

‘And it will be awful for them, and you can’t bear to do that to them?’ I suggest, dabbing his tears and wiping a drip at the tip of his nose. He nods and holds my gaze with his. ‘And how have they responded to choking episodes so far?’ I ask. He considers, and tells me that he hasn’t had any – yet.

‘Why do you think that is?’ I say. ‘Just good luck? Soft food? Or what?’

‘Well, I’m still waiting for that to start,’ he says. ‘Or rather, I want to die before it starts.’

‘So if I were to tell you that people with MND do not choke as a terminal event,’ I say, ‘what would you make of that?’

‘I’d ask you for your evidence. Prove it!’