Abstract
There is a statue outside Friedrichstrasse Station, in the heart of Berlin, called Trains to Life – Trains to Death. It has two groups of children, one a pair of children carrying suitcases who were saved by travelling on the Kindertransport to the United Kingdom and the other five children representing the 1.6 million children who died in concentration camps. I looked at this sculpture, as I do now writing this piece, with tears in my eyes. It brought home to me what both my father and mother might have felt fleeing their homes, seeing those around them disappear. I also thought of my own children at that age, and what that must have felt like for the parents seeing their children leave, not knowing if they would ever see them again.
My mother was born in Austria and spent her first few years in the Czech town of Brno. This was during the 1930s and, living among a Jewish community, she saw many of her friends and families disappear, never to return. At the age of 9, she moved to the United Kingdom, travelling on the Kindertransport from Berlin, as a refugee. Her mother sadly went to a concentration camp and died there. She attended a remarkable small residential school which took in Jewish refugee children and was left there for months on end without seeing other family members, even during holidays. I felt that her seeking recognition and approval for much of her life was something of a reaction to her childhood, where lost and fractured relationships resulted in her trying to find a sense of belonging.
At 86, my mother was diagnosed with acute myeloid leukaemia. It was not amenable to treatment that would either prolong her life or alter the course of her illness. While still in hospital, we, the family, asked her what she wanted to happen next. She said she would like to spend as much time as she could at home and then go to the local hospice to die. At this point in my career as a palliative care doctor, I had, for a number of years, become interested in the practice of public health palliative care, particularly building compassionate communities supporting people undergoing the experiences of death, dying, loss and caregiving. While my mother was still in hospital, freshly diagnosed with her terminal illness, we set about organising a compassionate community of support. By the time she got home, everything was in place. Family members of children and grandchildren gathered. Friends became part of the circles of care. Everything went smoothly, despite minor hiccups. Meals were cooked, people dropped by and my mother was able to wrap up her affairs in a way that was comoftable for her.
Those fractured relationships echoed down into our own family life. Things were not always harmonious between us. There was a good deal of complexity and at times relationships were not always cordial. Nevertheless, when the time came, we set aside our differences and focused on creating a compassionate community for my mother.
The whole process brought about healing in so many ways. We organised ourselves so that those closest to my mother, mainly children and grandchildren, spent the most amount of time with her. As she became less well, we did the physical caring in addition to surrounding her with love and support. A very kind professional carer visited us once and saw that we were doing a good job. She gave us some great advice on how to move my mother, now bedbound, on a large towel, making it easier to wash her and get her comfortable. She did not need to visit again. As my mother became less well, we organised a rota so that she was never alone unless she requested it. We sat with her throughout the night, taking it in turns to do a few hours at a time so that everyone got a chance to get some rest. My stepfather, quite elderly himself, needed his sleep so he was able to move into a spare bedroom to get a good night’s rest. My mother would wake up a number of times in the night. I remember with fondness her saying ‘do you think I could have a cup of tea and a piece of toast?’ We gently pointed out that she had asked for this 20 minutes ago and that the teacup was still hot.
Surrounding close family members was more family and friends. There was a constant stream of people who did the shopping, cooking and cleaning. If bed linen needed changing, someone came by, washed it, dried it and delivered it back up to us. During the month of her illness before she died, much to the relief of everyone there, I only needed to cook a meal once.
The feeling of love and support was palpable. My mother was more peaceful and content during this period than I had ever seen her. It was as if the burden she carried, of searching for a sense of belonging had lifted. She had found it, among the love and care of family and friends. We asked her, after she had been home for a couple of weeks, if she still wanted to die in the hospice. She said that she actually felt really comfortable at home and if it was ok with everyone, she would like to die there, which she did peacefully.
For those of us supporting her, we established close relationships of humour, trust and care that has endured over the years. The things that had divided us no longer mattered. We talked about compassion and how incredible it became in this environment. Rifts melted away. And the sense of all of us working together as a team became invaluable again when my stepfather was diagnosed with metastatic prostate cancer. Everyone gathered around once more, this time for a much more protracted illness. He had support through his chemotherapy, admissions to hospital and then finally the last stage of his illness. He too died at home, surrounded by the warm environment of love and care.
Trains to Life – Trains to Death. What makes the difference? The answer lies in the presence and absence compassion. When humans choose to ignore their compassionate nature, the results are catastrophic. I think of my grandmother, who saw her daughter leave, never to see her again, dying without family in a concentration camp. When compassion permeates life, it is transformative. As a family, we found both sadness and healing in the death of my mother.
