Waiting: Living in the dying room

In the Autumn Issue of Inside Out, 2012 No. 68, I published an article entitled “A conversation on death and dying” which was triggered by my mother, Elspeth, who joined Dignitas, a group set up in Switzerland, where assisted dying is legal. The conversation explored some of the reasons why people might be against assisted dying and why people like my mother felt so passionately about the right to choose to end their lives.

I believe with an ageing population and increasingly sophisticated medical and pharmaceutical interventions this discussion is set to continue. Will this be akin to the abortion debate? At the time of writing one person a week from the UK travels to Switzerland to die.

We were lucky. We didn’t have to go to Switzerland and return with the ashes. My mother died two years ago close to home and with dignity. Her wishes to not be resuscitated or to enter a hospital were respected.

His soul swooned softly as he heard the snow falling faintly through the universe and faintly falling, like the descent of their last end, upon all the living and the dead.

(Joyce, 1914/1993: 160)

This is a reflection on waiting, that liminal place of existential angst that lies beneath the surface of our everyday routines and pleasures. How can we live well and joyfully alongside the inevitable process of dying and death?

I am part of the ‘sandwich’ generation who often work, as well as helping out with grandchildren and caring for aged parents. Like discussing sex and sexuality, as a society we seem to be uncomfortable around the topic of death and avoid talking about it. After all, we are all going to push up the daisies or head through the pearly gates, depending on your viewpoint, and whether we think about it, obsess about it, dream about it or deny it, death is always there, just around the corner. It’s a random sniper with no respect for age, gender or personality. It’s definitely not fair. Death is happening all around us all the time, through disease, war, natural disasters and mental anguish. It is not something we can escape. We all want ‘a good death’, preferably in our sleep, surrounded by a loving family having lived a full life, but most of the time it’s not like that.

Like life, death can be messy. People die alone, in pain, sometimes in traumatic circumstances, many before their time and many malingering in a liminal place with regrets and accumulated losses. The longer we live the more we are reminded of our own mortality and we will witness more deaths, accrue more losses and have more funerals to attend. The longer we live the harder it becomes to look after an older relative as we grapple with our own ageing process. Maintaining a sustainable and enjoyable life in the ‘waiting room’ can be challenging.

My mother was 86 when I first wrote the article and she continued to talk about death and dying for the next six years. She was lonely and needed to talk about what was on her mind. A place to express her fears and they were many; not so much a fear of death itself as of the process of dying and what that might entail. Prolonged suffering and pain topped the list. My father had died very painfully from cancer over thirty years ago and we were all badly affected by his manner of passing, particularly my mother who was haunted by the inept diagnosis at the time and the lack of medical support. Our conversations were often tough going. Heading towards 70, there were times when I longed for her to shut up and stop reminding me, not only of my own mortality, but also of the aches, pains, depression and anxieties that come with ageing. In a moment of frustration when she complained of a headache, I suggested she take a Solpadeine. ‘But I might get addicted,’ was the response. ‘You’re happy to go to Switzerland but you won’t take a Solpadeine!’ I pointed out. We both ended up laughing. Lest you think we were only pre-occupied with morbidity we also had many happy conversations about life and family; Mum always maintained a keen interest in her grandchildren and great-grandchildren, friends and relatives. She was an avid reader, a life-long volunteer and she enjoyed political discussions and a good party.

At 89 my mother reluctantly moved into a retirement village where she continued to live independently in a nice apartment surrounded by amenities for the elderly. She knew she was lucky to be able to afford this privilege. The community was a sprightly bunch of people who lived life to the full but often in one-to-one conversations very real fears would come to the fore: worries about children and grandchildren, fears about money, the state of nations,

the destruction of the planet, the cost of living and the cost of dying, fear of ending up in the dreaded nursing home, fear of dying alone, fear of acute and chronic pain, fear of doctors not listening, fear of the form that says Please Do Not Resuscitate being ignored, fear of a debilitating stroke, and of locked-in syndrome, and on the list would go.

At 91 my mother went downhill. Her memory had lapses, she had falls, her anxiety levels rose and the conversations became more resigned. She had had enough of life. Friends were all dead and life held no purpose. The trip to Switzerland was still a remote possibility. She turned 92 in September and by December she had a series of strokes and still refused to go to hospital. On December 21st she was moved to the ‘dreaded nursing home’ and I had to get on a flight quickly. Death, like birth, never comes at the right time! It so happened there was a fog at Bristol airport, so as we left Dublin, I found myself heading towards Manchester! Sensing my distress, a young girl on the plane asked if I was okay. We got talking. She was on her way to spend Christmas with her mother, who no longer recognised her, in a dementia wing. The kindness of strangers meets a universal theme of losses and grief. A young man sitting next to me kindly distracted me with stories of his work as a jockey. An expensive taxi ride with a kind and sympathetic driver through the fog got me to the retirement village late at night where my sister was waiting. Mum was still alive but not reachable.

The dying process was to take ten days and like a protracted labour went through its exhaustive transitions, some acutely intense, some uncannily lucid, some surreally humorous, some deeply touching and moving. I think we were all somewhat in an altered state. The energy in the room was palpable and sometimes overwhelming. The therapist part of me found it an incredible learning experience. The daughter was anxious and protective, the grandmother became the adult as I had to update family overseas and concerned friends. The sisters were as one. Every day we told our mother she could let go and that we all loved her. But she was not ready to leave and held on. The backbone for this surreal scenario was the palliative care team: Eleni from Bulgaria who tapped in to Mum’s psyche from the start and understood her process, the gentle male nurse from Mauritius, the zany warm-hearted carer, covered in tattoos, who had previously driven trucks all over Europe and who brought humour to the long hours of waiting. These and several other kind and sensitive souls were the people who brought compassion and the ordinary into the heightened emotional chaos that we were experiencing. We could not have done this without their support. They would send us off to rest. They told us to give Mum space to die. They correctly predicted that she would fight on for some time because they sensed her powerful energy. They looked after us as much as they looked after Mum. The no longer dreaded nursing home gave us an unforgettable Christmas Day, decorating a little table in the small dining room, next door to Mum’s room, with flowers and Christmas crackers. We had turkey and plum pudding and drank champagne with the staff. No effort was spared to celebrate life in the dining room next door to the dying room. I was seeing that it was possible to appreciate joy and sorrow in the here and now, as long as I remained open to allowing these conflicting emotions to merge.

Two days before Mum died, I sat with her. The window was open even though the weather outside was awful. She hated stuffy rooms. There was a terrific wind. The energy was so heightened it was hard to breathe. I spoke to Mum. She seemed to hear what I was saying. Was she seeing anyone? No. The wind was beckoning so I mentioned the fields, the trees and flowers. Yes, she said with great clarity. She was connecting with the natural world where she had always belonged. In that moment with the wind howling and the trees bending over I felt a deep connection to my ancestors and a whole conference of dead people I’d known over the years, and a peace descended. Mum then went into a deep sleep for two days and died peacefully on New Year’s Eve. My sister and I were with her. In that moment as the last breath leaves the body a finality dawns as we all deal with letting go. Mum has let go of everything she ever knew or had and we’ve let go of our firewall. We are now orphans, next in line, keepers of the flame. It’s the end of childhood – the end of an era. Emotions and feelings are a maelstrom of relief and sadness. Adrenalin props up exhaustion. We have some moments of quiet as we say our goodbyes but the practicalities surrounding death are already beating at the door. The doctor must come and sign a death certificate. I have to phone the funeral director, James, a childhood friend who late in life decided to become an embalmer and funeral director. It’s New Year’s Eve and I apologise for inconveniencing him, but he is reassuring and sweet. His presence that evening was invaluable and again the ordinary kept the extraordinary calm. As he took Mum away, I wanted to wrap her up in a coat because it was so cold that night and he handled my irrationality with compassion and understanding. Sometimes it takes a while for the soul to catch up with the body.

The following day was New Year’s Day so thankfully everywhere was closed. We were able to phone family and friends and gain some normality. This was to be the brief calm before the relentless two-year storm of solicitors, death certificates, wills, probate, council tax, bills and estate agents. Death proved to be a very lucrative business.

Then there was the funeral. We were not able to hold the funeral for five weeks thanks to queues at the crematorium. While this did give us time to plan a good send off the waiting was hard and felt eerily unfinished. When the dreaded day came, it was a cold, crisp, beautiful sunny morning and the anxiety of waiting suddenly lifted. The wicker coffin festooned with flowers was shouldered by grandsons, standing tall and proud. The small chapel was filled with family and friends who all sang to lift the rafters. It was a real celebration of a long life. At one point I invited everyone to sit in silence and reflect on their own losses – for grief is not just universal but personal and a funeral is the shared space for it. You could have heard a pin drop as silence descended in this place, this container of losses. After the chapel, a walk through green fields led to the crematorium where close family gathered to say goodbye. This would seem to have been a fitting place to pause and reflect, but we then had to let go of the quiet, put our crumpled used tissues into our pockets and go to a hotel where a noisy lunch was in full swing. Buoyed by people, we met and greeted and exchanged memories well into the evening. Adrenalin has its uses!

The following day I went to pick up Mum’s ashes wrapped in a plain muslin cloth within a cardboard box (she was very conscious of the environment). Something had shifted after the funeral. A curtain had closed on her physical presence. That evening my sister and I scattered her ashes in the flowerbed she had cultivated in the retirement village. It felt just right. She was returning to the soil surrounded by flowers and large trees. By June the roses and catnip were waist high!

The grieving process has taken much longer and goes through many phases. This is where support and understanding from family and friends is so much appreciated. Harrowing as many moments were, I wouldn’t have missed the experience for the world. Accompanying someone on such a journey is a privilege, as profound as welcoming a newborn into the world.

As I write, I feel death as a strong presence. I fear it less but am still anxious about the dying process. Then there are the existential questions. Whether you have a religious belief, or none or follow a spiritual path your views on how you live, die and what happens after death are unique to each one of us; many variations on many themes. I think back to all the courageous people I’ve worked with: grieving clients, traumatic loss through suicide, stillbirths and cancer support groups including the parents of terminally ill children. And these are some of the concerns that stay with me:

“All change is loss”

“It’s the waiting that is so unbearable”

“When I got my cancer diagnosis, people I knew crossed the road when they saw me”

“I’m afraid for the world we have left our grandchildren”

“When I’m sad and depressed, people say I’m not fun to be with”

“Online trolling has destroyed my family”

“Will I ever stop grieving?”

“Pain is so exhausting. I can’t take any more of it”

“I’m scared of dying alone”

“I’m afraid of letting go of everything”

“How will I find the strength to go on living after losing my husband/wife/partner, parents, siblings, children?”

“Life no longer has any meaning or purpose”

These are just some of the many unanswered questions which are part of being human, and they don’t go away. The ‘waiting’ space is the time and place to talk about living and dying.