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From the time I saw the film “My Girl” as a child in the early 1990s I had questions about the end of life. What happens when we die? What would it be like to live in a funeral home? How does it feel to lose a parent or a friend?
For obvious reasons I kept these questions to myself. Death wasn’t a topic that could be discussed as openly as what I learned in dance class that day. This was part self censorship and part socialization—I was never taught about death or dying in school (or any type of loss for that matter), so I never felt it was an appropriate topic for public conversation. I kept these questions under wraps, until my mother was diagnosed with terminal cancer in 2013. She died three months later.
As a woman in her late twenties my questions became much more complex, replacing curiosity with fear and unfamiliarity. That’s the thing about the end of life: despite its universality, it can be sticky and complicated and imperfect.
My recollections of the last six weeks I spent with my mother are incredibly vivid. I can remember every hospital room we stayed in—the smell of her shampoo, our conversations and our disagreements. I remember the nurses who took the time to teach me about wound care and medication management and other gems such how to change the sheets with someone still in the bed. Laura and Kathy, the nurses who found our morbid sense of humour entertaining, were our favourites.
Having transitioned through intensive care and the surgical ward, back home, and eventually to a hospice, we spent over a thousand hours together adjusting to the cycles of the end of life.
When she no longer needed to eat or drink I learned that this was a normal part of dying, and that it was an act of love to resist the urge to encourage her. When she could no longer speak I learned that she could still feel and hear, and that we would need to change the way we communicated with one another. I learned to read her facial expressions for pain and discomfort.
Through caring for my mother I also learned to let go. After she died, I felt a loss of identity. I couldn’t quite re-orient myself as a motherless child, and felt like I had gotten lost in the natural order of things. I still feel this way sometimes when I remember that she’s gone.
To paraphrase mental health researcher Allan Kellehear, grief is a ‘forever thing’ and requires ‘forever strategies’—it’s not a matter of ‘returning to normal’ following a loss. Workplaces may offer a few bereavement days and friends may check in for the first few weeks, but the physical, psychological, emotional and spiritual costs of loss last a lifetime.
As part of my strategies for coping, I began to read personal memoirs about love and loss because it made me feel a sort of comforting solidarity to join the ranks of the bereaved. It also allowed me to become more settled in the reality of my own future mortality. And while I couldn’t change the grief I felt, I knew I could choose how to engage with it, spending many hours exploring the corridors of darkness and light.
I didn’t have a single, all-revealing ‘aha’ moment, but rather a series of insights which began to connect my own experience with the experience of others, and with the broader social, political, cultural and economic order of things. Part of my ‘forever strategy’ has been to look at the ways in which curiosity, compassion and conversation can transform the way we think about the end of life, and about caring for those who are dying.
The heart of the matter is that the universality of death and loss can be a source of connection and solidarity. We have an active role to play in supporting each other in times of grief and mourning, much like we rally together in times of celebration and social struggle. But for that to happen we must change how we think about elder care in fundamental ways.
As the population ages and global disparities in health and wealth continue to rise, we have an ever-greater responsibility to undertake those changes. Throughout the world, the number of people aged over 60 is expected to more than double from 841 million in 2013 to more than 2 billion in 2050. It’s also projected that the number of older people will surpass the number of children for the first time in 2047.
While increased longevity of life has obvious benefits, it also places more strains on health and social services that are already buckling under neoliberal ‘reforms’ which have shifted responsibility away from the state, and onto charities and ordinary people. This has a ripple effect in making it more difficult for families to fund care and take time away from paid work for care-giving responsibilities. Unfortunately, compassionate care benefits and employment insurance for caregivers are often inadequate, and may not be accessible to everyone in need.
Caring for someone with a life-limiting or life threatening illness can take up more time than a full-time job—up to 54 hours per week by some estimates. In my family both my brother and I left our jobs to be actively involved in my mother’s care. This is a decision that many would not have the luxury of making (nor should they have to). But if care could become a fully shared and supported experience these problems would at least be more manageable.
In fact, the emerging connections between social action and the universal experience of loss are already being made in a range of new and inventive mediums, programs and methods of end-of-life care. Many are rooted in Kellehear’s philosophy of “Compassionate Cities:”
“Compassionate end-of-life care approaches are partnership based and emphasise social interrelatedness. They presuppose the care of experiences of dying and loss within communities of people who understand and support one another. Compassionate Cities represent holistic approaches to end-of-life care. In this sense, they include formal healthcare services, but also extend the definition of care and create partnerships with a number of people and organisations in communities that offer skills which serve end-of-life care needs.”
In a conversation that’s still dominated by medical interests, a citizen-centred approach like this is a welcome departure, providing a springboard for collective action that allows communities to define their own unique challenges and solutions to end-of-life issues.
The Dying Matters coalition led by the National Council for Palliative Care is another great example. Comprised of almost 30,000 members across England and Wales, the coalition has successfully connected individuals and organizations from across the National Health Service, faith groups, academic researchers and the funeral sector to “help people talk more openly about dying, death and bereavement, and to make plans for the end of life.” By providing support and resources and engaging the community through awareness events and online forums, Dying Matters has established itself as a transformative presence in the field.
Death Cafe offers another opportunity for people to talk about dying. The concept is simple but powerful: an open space with no agenda in which attendees discuss anything they want pertaining to death and end-of-life care in coffee shops or other non-threatening venues. The Cafe uses a ‘social franchise’ model so that anyone can organize a conversation so long as they adhere to certain guidelines. Since the first Death Cafe there have been over 2,000 such events in countries from New Zealand to the USA.
Even campaigns about funeral poverty can be vehicles for positive change. Quaker Social Action, for example, has established the “Fair Funeral Campaign” to raise awareness about the increasing costs of funerals and to advocate for fairer policies and practices from the funeral industry.
The point of these examples is to show that death can be normalized within the cycles of life, removed from the clutches of commercial interests and the medical establishment, and returned to its place at the center of communities.
On the night my mother died, my brother Alexander and I were sitting in her bed in the hospice. The room was abuzz with a sort of soft electricity that we felt but couldn’t explain. Eventually her breathing slowed, and then it stopped, just as the needle lifted from her favourite Patsy Cline album. Neither of us moved for a long time. We just sat in the space that our mother had left behind.
When I called my husband, Pierre, around midnight to give him the news he said something that came out of left field considering his Irish Catholic upbringing. He started talking about physics and told me to remember that energy cannot be created or destroyed—only change its form.
It’s been nearly two years since my mother died and I’ve thought about that law every day. For me, whatever energy was left behind that night has been transformed into a conscious effort to talk about death and dying in a radically different way, on the off chance that it might encourage others to talk about it too. Loss and grief can nurture compassion, joy and connection, creating a revolution in the way we care for others.