My introduction to death came in a traffic jam. I turned on the radio and heard a woman describe her father’s final days in a hospice. His end, she said, was a strangely warming memory because of the hospice volunteers who entered the pain of strangers and held their hands as they faced the unknown. In her grief, she explained, she’d encountered humanity at its best. I forgot my frustration at the static traffic as I listened. The prospect of a missed train and crowding deadlines was unimportant, seen through the lens of loss. It was an instant realisation that I wanted to be where life matters most, which is when it is ending. I wanted to be one of those hospice volunteers.
My experience of death had been at a distance. I’d lost grandparents and cats. As a clergyman’s wife, I’d attended funerals of parishioners, tidied tombstones in the churchyard and contemplated my mortality from the pews during Lent. I had never seen a body. I’m frightened of the raw grief of others and I’m squeamish about blood. My volunteering roles have always been with children. I’m used to beginnings, not endings.
I ignored my deadlines that morning. Instead, I Googled hospices. A hospice in the next county was seeking a volunteer to write the life stories of patients in its day centre. This felt reassuringly familiar ground. I applied. Within a month, I was listening to strangers recounting their loves and their losses. Their trust took my breath away. So did the intimacy of hearing memories that had never been shared and regrets that had never been expressed.
Each interview would start the same way: with an apology. The patients apologised for having led boring lives that were not worth recording. Then, as they rewound the years, I realised they were discovering for the first time that they were a pivotal part of a story; that they had made an imprint on the world. A life recounted can make sense in a way that life lived does not. I heard the anguish of a Second World War pilot haunted by the bombs he’d dropped on Germany. I recorded the childhood of a German woman who had grown up beneath those bombs. An ex-convict confided his years of alcohol addiction in the hope that his story of redemption might be shared to help others. I accompanied octogenarians through the hopes of their youth to the resignation of their ending, and, when each story was printed and handed over, those strangers felt almost as familiar to me as family.
People were admitted to the day centre if they had less than two years to live. It was a cheerful space full of light, cake and chatter. There was time for friendships to form and flourish. Death felt remote. Occasionally I’d be summoned to the ward of rooms where patients were in their final weeks. It felt a hallowed place. Mysteries beyond my comprehension were unfolding behind the closed doors. Ashamed of my own health, I hovered at bedsides and marvelled as people wrested their remaining shreds of energy to share their lives. One woman could barely speak and her memories were scrambled by a brain tumour. I suggested she rest. “Let’s crack on!” she whispered. Her memoir was for her young children. Through her story, she hoped to live on. We only met the once. She died before she could get past her childhood, but that childhood lives with me as vividly as my own.
I began to see life differently. Chores and routines I’d thought tedious have a sanctity on a deathbed. Everything I took for granted – the school run, the weekly shop, an unexpected soaking in a rainstorm – seemed a gift to those no longer able to experience it. The details the patients recalled of their past were so small, but so precious. I saw people differently, too. Instead of anonymous faces of strangers in the street, I saw protagonists of untold stories; the quiet heroism of ordinary life.
The day centre closed temporarily when Covid struck and most volunteers were stood down. I agonised over all the tales that would never be told. In spring 2021, an SOS came from the Cottage Hospice in East Sussex. They needed volunteers to work shifts with nursing staff. This was not familiar ground; it combined my fears of wounds and body fluids and unleashed emotion. I was uncertain that I could cope with the death of people I had tended. Then I realised that I will one day have to cope with the death of people I have loved. Perhaps to immerse yourself fully in life, you have to confront mortality. So, in fear, I signed up.
The Cottage Hospice is offered free to families and paid for by fundraising. It was established by Hospice in the Weald in 2019 to be a home-from-home rather than a hospital, for those who don’t want to be parted by visiting hours and ward rules. Relatives move in with the patients and care for them with the support, if they want it, of nursing staff and visiting doctors. There are en suite bedrooms with sofas and private verandas, a family kitchen stocked with food, guest rooms for visitors or carers who need a break and stylish lounge areas. Patients can personalise their rooms, which overlook hills and meadows, and host guests in a free café. Some of them bring their pets. The idea is to remove some of the pressure on families so they can make the most of the time they have left.
“Celebrating life, dignifying death” is the philosophy. It feels more like a boutique hotel, and what struck me the first time I entered, was the pervading peace. Not silence, although there is a great quiet, but a tranquillity. It baffled me. Anguish beyond my imagining is endured in those rooms. Some patients were leading active lives until a recent diagnosis and arrive in shock. Some have suffered long illness and are resigned. Family caregivers know that when they leave, they will go home alone.
Over the months, I think I’ve started to understand. The cottage is a pause, a bubble, and in that pause families, in coming to terms with death, can make sense of their life together before the agonising step into the future.
In the outside world, death is hidden, unmentionable. In the hospice, it’s what unites all those there, and, in being acknowledged, it is dignified. It can be a relief for relatives to talk openly about their fears and grief. It is an honour for staff and volunteers to be there to listen. “I feel this place has wrapped its arms round me,” a young wife told me after terrifying weeks of waiting in hospitals.
Instead of collecting memories, I found myself bathing patients, feeding them, talking to families and, occasionally, helping the staff performing last offices for those who had died. To my surprise, I found death in the abstract more frightening than death personified in individuals who can squeeze your hand and share a joke and who, while losing their life, radiate their humanity.
It takes a special grace to accept dependence. In the outside world, we feel humbled by the status and success of others. In a hospice, I’m humbled by figures in the beds, trustingly accepting the ministrations of a stranger and whispering, even when barely conscious, a thank you. Dignity is not what I thought it was. I was hot with embarrassment when I washed my first patient, until I saw she was smiling at me. In her acceptance, she had dignity. In my fumbling confusion, I did not.
Drugs manage the physical pain and some of the mental torment. They can’t remove the dread of loss and the fear of the unknown, but most of those I met have arrived at the same acceptance. Dignity of spirit overcomes the indignity of helplessness. Small gestures – a wiped face, a plumped pillow – feel like tributes. They are all I can offer as they face what I can’t fathom.
My fears were dissolved by the calm of the nursing assistants. Many are young, but have learned more of life in that building than I have done in twice their years. Formal staging posts to friendship are bypassed and staff, volunteers and families are plunged straight into a relational deep end. Some patients and carers want the release of a laugh. Some want to confess fears, share memories or talk of anything but sickness. Some require silence. You have to try to intuit what they need without blundering. I live in terror of an ill-judged word and in wonder at the power of a held hand.
It’s in the kitchen that the hospice’s vision is enacted most powerfully. Caregivers from different families mingle at the table, preparing meals or making tea. We may never have met before, but sometimes the chatter is so lively, the vibe so domestic, that I feel we’re in a house share. A patient’s husband reminded me how to use the microwave each time I forgot and we joked at my culinary incompetence. A pair of young siblings concocted a banquet for their dying father. They’d bought his favourite foods and a bottle of champagne. They decorated the trays with flowers and had hired a band he’d admired. He’d loved to party, they said.
At quieter times, that intimate domestic setting is where relatives let their guard down, confide their struggles and invite a hug. There’s a connectedness in shared crisis that can make you feel more human. Life seems more real sometimes inside the hospice than it does back in the world of deadlines and small talk.
You’re supposed to leave their pain at the door when you clock off from a shift, but some people’s pain comes home with you. The hard part is the absences when you clock on a week later. Families you grew close to are suddenly not there any more and you never got to say goodbye.
Six months after I’d started at the Cottage Hospice, my father was taken ill. He died 10 days later. His sickness was sudden, but the hospice had prepared me. I dread loss more keenly, perhaps, than I ever did, having witnessed families watch their lives fall apart, but death itself has seemed less frightening since I confronted it there.
It was my encounters with patients and relatives that enabled me to accept my father’s diagnosis without terror and to face his body on the bed. My hospice shifts haven’t made my grief any less, but they’ve made it seem less isolating. Loss is the one certainty we all face, but, in the outside world, it tends to be borne out of sight and earshot. Accompanying relatives on part of that agonising journey has helped me come to terms with my own emotions and to root my personal bereavement in the wider human story.
Hospice volunteering has changed my understanding of life and death. There are no happy endings in the conventional sense. The patients won’t get better. One has to accept one can’t save them. There is no counsel or comfort one can offer strangers facing the inevitable. That’s been hard to learn. I like to fix things; I’m prone to impose advice. I’m discovering that it’s essential to recognise that we can’t control life in the way we assume. The existence we take for granted is as frail as dreams and it can dissolve in a heartbeat.
Sharing with families the most private moments at a deathbed is an inexpressible privilege. Social barriers break down. In that limbo, away from daily schedules, relationships are prioritised.
In my head these days is a procession of faces of those I briefly knew. So many of them had craved more time. Now, when a new day breaks, I try to see it from their perspective and cherish the humdrum as a gift. And when I finish a hospice shift, I want to take back into the outside world that sense of life stripped back to its essentials, where what ultimately matters is love.
