Courtesy of TheGuardian.com | By Priscilla Ennals | Photo by Robert Daly/Getty Images | Originally Published 07.21.2018 | Posted 08.28.2018
The process of dying is so removed, sterile, and disconnected from living that it is hard to know what to do when confronted with a terminal diagnosis. Discussions with the medical experts commonly offer little guidance in questions that loom large, and for loved ones, equally, there is little direction. Death doulas – wise guides to dying – may offer a way through for those who are lost.
My father recently died from MND. I sat with him 21 months before his death in the office of the neurologist as the diagnosis was revealed. The specialist was kind and sorry, but it was a blunt talk. People live typically less than two years. Dad had little idea of the reality of what was to follow but had heard of Neale Daniher and his fight against the “beast”. The terminal nature of this disease didn’t really land for him. He had seen off a brain tumour, bowel cancer (twice), a stroke. He had things to do, people to help. He reflected on how lucky he had been in his life and still felt luck was on his side.
After crying together and alone, I then wondered what to do. Google and a scan of the medical literature was informative. The news wasn’t great. How do you keep living while death and loss show themselves on a daily basis? Can’t do up buttons, hold a cup, drive, swallow without choking. How do you deal with the practical, existential, relational, emotional and spiritual?
An MND information session promised answers. We fronted up with four others, all diagnosed within the last few weeks. All facing the same conclusion but all looking different. MND grabs people in very different ways; hands first, legs first, breathing or speech first. I was desperate to know how everyone in that room was feeling and how they were doing this living before dying. We sat silently as they whacked us with the reality. Electric wheelchairs, tube feeding, breathing machines. It seemed so end-of-the-line, so far from where we were at. We were all stunned but it kept coming, interspersed by the excellent news of free equipment loans, and that many people died at home.
We received great practical support for living with a progressive neurological condition but less help around the business of dying. As a family we felt completely at sea; like the questions we needed answering couldn’t even be asked.
My sister recalled mention of a death doula on a TV show and googled until she found someone to approach. Birthing doulas are better known – supporting the transition through birth to parenthood. Why not something similar for the end of life, a similarly unfamiliar transition?
Annie came into our lives as our death doula. A wise guide for dying, and the living before and after death. She bought experience in palliative care, supporting her own mother’s death, beliefs from the Buddhist tradition where death is part of life, and a willingness to listen. She allowed us to articulate what we needed in our own time, but offered suggestions about what was possible or might help along the way. She offered to walk the unknown alongside us and it eased our turmoil.
She came with a checklist of things to think about. We referred to this often – it helped. Advanced care directives, powers of attorney, wills, body donation, research trials, treatment preferences, respite, care in the home, palliative care, a funeral. She attended many appointments with Dad, a huge relief when we could not be there.
After a busy life of dairy farming, family and community service he had filled his retirement with volunteering and connecting with others. As MND drained his capacity to contribute, he was tortured by lack of purpose and the frustrations of compounding physical loss. Annie explored with Dad the things that made him feel good and helped us bring them more routinely into his life. Music, massage, talking about and documenting his life.
Annie facilitated Dad and Mum talking together about death and their life together – conversations they had been unable to have alone. She allowed him to talk about dying, to notice how things changed over time, to face up and find some sort of peace with it. When I felt overwhelmed by anxiety I talked with Annie. She reassured me this was a normal response and one I might try acknowledging rather than fighting – it helped. She encouraged me to ask for and accept help.
And then, after what felt like ages, he was really dying. He stopped moving, eating and was clearly shutting down. Because we had talked this through with Annie we were somewhat prepared. We brought his bed into the living room and gathered the family for what would be his last four days. Palliative carers, Dad’s GP and Annie advised how we could soothe him with medicine, touch, talk and music. How we could soothe each other by being together and taking a break when we needed to.
On his final days we kept vigil. Wife, children and their partners, and grandchildren all there – OK – knowing our roles and allowed to feel it all. Annie would have come if we had asked, but we did not need her. It turned out we knew just what to do.
Inspired by a friend who spoke of the privilege of washing her sister following her death I had asked Annie if we could do this for Dad. She provided written guidance. As we washed his face, hands and feet, the kids spoke of how his mouth had told them stories and sang them songs, his hands held theirs as he walked them to school, his feet kicked balls and danced with them. Later the undertakers from the university came and collected his body as we ate pizza. It was a good ending for us all. A death, well-guided by our doula, just part of life.
• Priscilla Ennals is a mental health researcher and occupational therapist
Dying & Death Talk 