changed the soiled sheets. I wanted to help her care for Gran but I felt frozen, unsure what to do, even though I had worked in hospitals for two summers by that time. Gran was my kin, not a patient. That made a difference then.
I don’t remember being afraid of death, rather just curious about the unusual smells in the room and the fact that she coughed a lot and didn’t talk much. Mum made it okay. She didn’t seem afraid either, just busy. She had been a nurse too, which must have helped her know what to do. There were no long heartfelt conversations at Gran’s bedside, nor long bucket lists of activities to be accomplished. There was just the work of dying – for my gran, the patient, and for my mum, the caregiver.
I learned then that most deaths are natural. Not easy, but not necessarily scary; nor traumatic or over-medicalised; not romantic nor glorified. Death is most often ordinary and manageable, acceptable but deeply sad. The majority of old people, like my grandmother, died at home in those days before it was commonplace to be admitted to a hospital, or hospice, for the last days or weeks of life.
Most people now under sixty have never seen a person die, so have become deeply fearful about death; both their own, and the deaths of their beloved others. They have had no role models to show them how to care for a dying person, and therefore no confidence in being able to do so. My hope is that the baby boomer cohort who pushed for the return of the midwives to de-medicalise birth will also be instrumental in reclaiming the death process. This book is my contribution to the re-empowering of all of us to take charge of our lives and our deaths, remembering that we know how to die, just as we knew how to come into this world. We also know how to heal, and how to settle our lives as best we can before we die. In my view, this is the greatest gift we could give our loved ones: to be prepared and open and accepting when the time comes for us to leave this world.
My first summer job was at the Glasgow Sick Children’s Hospital, working as a nurses’ aide on the orthopaedic floor. Frustrated Glaswegian kids with broken bones, strung up on traction, yelled at me to fetch things and made fun of me if I messed up. Even though their demands intimidated me, at sixteen I loved the feeling of being helpful. The following summer I worked in a psychiatric hospital for the elderly where many patients had been hospitalised for thirty or forty years. I remember an ancient, scary woman who shuffled along behind me everywhere I went, and stared at my every move like an owl contemplating her prey. At a young age, I was compelled to try to understand the brokenness of humanity.
When I enrolled at St Andrews University, I planned to study geography. I had always loved maps, and still do, but in my third year I declared a major in psychology. The study of human behaviour trumped my interest in topography. I graduated in 1980 with an MA in Psychology, and the following spring I became a student again, studying nursing at the Royal Infirmary in Edinburgh. I wanted to travel and work at a job that was in demand across countries and cultures, and to find a way to make a difference in the world.
I was twenty-two and had been a student nurse for six months when I was assigned to care for a man in his forties dying of leukaemia. He had just been moved from the main ward, with its fifteen beds down either side, to one of only two private rooms. Standing nervously outside his room that evening, as my heart hammered against my ribcage, I thought about what I would say:
Good evening Mr Stevens, I’m Nurse Brown, here for the night shift. How are you feeling?
I wasn’t sure that my experience with Gran or nursing school had prepared me for this.
I took a deep breath and knocked softly on Mr Stevens’ door. A stronger voice than I was expecting said, ‘Come in.’
The darkened room enveloped me as I stepped in, my eyes taking a few moments to adjust.
‘Hello, you must be my nurse for tonight. Just call me Jack, will you? All this formality – not much use for it at this stage of my life.’
‘Good evening. I’m Nurse Brown,’ I said. I wasn’t allowed to tell patients my first name or call them by theirs, though I always wanted to. His baldness struck me, as did the dark circles under his eyes.
The photograph by Jack’s bed caught my eye. A family shot, taken on a windy day somewhere on the coast. The woman’s dark hair was blown across most of her face; she had a joy about her. Two children: a boy about eight years old, a cheeky face, a red-head; and a little girl, perhaps five, holding on to a soggy-looking cracker, a shy glance at the camera.
‘The summer holidays?’ I asked, glad for the opener.
‘Just this past summer, on Islay,’ Jack replied. ‘Bitter wind, but we love it there, been going since Alistair was a baby. Won’t be any more of those holidays now, at least not with the four of us.’
‘Mmm,’ I said, at a loss for words. Tears threatened, but not now. I bustled around the room, straightened the pile of paperbacks, folded the Guardian and popped a few scrunched tissues into the paper rubbish bag taped to the edge of the tabletop.
‘Shall I refill your ice water?’ I asked.
‘Thanks. The painkillers make me unbelievably thirsty.’
I picked up the Styrofoam cup, glad for the excuse to step out of the room. As I stood at the ice machine, the clatter of the cubes dropping into the empty cup soothed me with its ordinariness.
Although I felt awkward and incompetent to help Jack with his vast sadness and fears about dying, over the next few days he put me at ease by talking openly about his feelings. He described the guilt he felt about leaving his children and his wife, even though he knew cancer wasn’t his fault, and he worried about the pain his death would cause them.
With Jack, I learned that it was not my responsibility to take away his sorrow and worry, but more to offer a soft place of caring for his feelings to land. I found that if I mostly listened and spoke rarely, Jack talked himself through his feelings until he finally ran out of words, and a deep quiet wrapped around us. The space between us seemed to connect us both to something larger, a perspective that I know now, more than thirty years later, can be deeply comforting in those moments when words make little sense.
Jack’s openness and vulnerability inspired me to learn more about how people live with dying, and how healthcare professionals can support people better through emotionally and spiritually difficult times. He taught me that a quiet, steady, non-judgemental presence – and a deep faith in the person’s ability to find his or her own way to navigate life’s end – is the cornerstone of any useful caregiving. It feels to me that this quality of presence originates and emanates from the heart; not the physical organ, but an emotional centre where a particular sensation gathers – perhaps it is love or compassion – generated in response to another’s suffering. This connection through suffering can create a feeling of spaciousness or wholeness between two people that I believe is the potential healing space.
The experience with Jack propelled me to seek a deeper understanding of how to create the conditions whereby this wholeness can be evoked. I will always be grateful to him for my initiation into the work that has become central to my life.
A few years later, when I was twenty-six, I wanted to spend a year living and working in a different country, so I went to Canada. A twelve-month stay turned into one of over thirty years. I worked as an oncology nurse in Vancouver for ten years, and it was during that time that both my love for the work and my dissatisfaction with the system within which I practised grew. I became frustrated with a healthcare model that focused more on treating the disease of cancer than the person with the illness. I wanted more time to attend to the heart and the spirit of a person, and their loved ones.
I also became disheartened
