Abstract
L
Over the preceding months as I watched my father's body wither, I failed to recognize my boundaries at work growing thin as I spent more and more time in the underworld. I would drop my son at primary school, rush to my parents' flat, help with a quick wash for dad, and change the sheets before driving to work eating my breakfast in the car. I was also trying to finish off an MSc in palliative care, and late at night after the family was in bed, I would fruitlessly attack my thesis. My father's general practitioner gently warned me as I rang her to organize palliative care, to chase up the scans, and to galvanize the district nurses…. Just be a daughter she said. Let the rest go.
I couldn't work out what this meant. Surely a daughter wants to do her best? So I ignored her and kept on going at breakneck speed as my father deteriorated and I eventually got him into the inpatient hospice unit. I was hypervigilant during those two twilight weeks wherein he lingered between life and death. Like an eagle-eyed ethnographer, I noted the overstretched nurses, the kind cleaners who stopped to chat, the busy doctors with their glass-fronted retreat, the hours of waiting, the yelling patient in another room to whom no one seemed to attend. I made mental lists of what could be done better. I was angry. I sat by my father's bed and wished he would die so I could leave. I motored on through the awful reality of his death, supporting my mother, organizing a lavish funeral with music, bagpipes, and hundreds of people.
As a music therapist with psychodynamic training, I am trained to recognize when transference may mold or interfere with the relationship I am building with a patient. For example, a patient may unconsciously project some characteristic of an earlier relationship onto me and we will use this in our sessions as we work toward authenticity, healing, and acceptance. But I failed to notice my own projections until it was perhaps too late. During my father's illness, every old man with cancer made me desperately sad, and my desire to “save” began to interfere with my role to listen, reflect, and hold.
After dad died I realized that I had been spending too much time in the underworld. Death had taken over all of my life, thoughts, and dreams. I wanted to be in control of how dad would die, but I now realize that was an illusion. Like Persephone in the Greek myth, I needed time and help to establish a balance between being in the land of the living and of death.
There is a paucity of literature about being a hospice worker and the interface with personal bereavement. There is research on burnout, secondary trauma, risk factors, and coping strategies. I now recognize in myself in the months preceding dad's death the hyperengagement of someone in full-on rescuing mode 1 and—even though I am also a Mindful Yoga therapist—I also recognize that losing my practice during this period (no time!) was a big mistake.
Until we lose someone close, we act as if death will happen only to other people, those we label “patients” who we meet at work. Death will stay where it belongs, over there with them, on the other side of the boundary. When it hops over and into the deep warp and weft of our personal lives, it's probably time for a reassessment before healthily working with it again. Healthy for us and healthy for those we care for.
So what helps build resilience for workers? (We will all inevitably experience loss).
• Commit to “self care.” This is an organizational issue as well as a personal discipline.
• Schedule regular supervision and open communication with your team.
• Look after your body and move: I use yoga but any exercise will do. Consciously being in your body as you move and breathe helps to stay in touch with what your body is telling you (listen to the bad back, the insomnia, and the irritable bowel).
• Make space for what you love—something creative, enriching, and joyful, plus time for those you love.
• Practice self-awareness. Lack of self-awareness is like driving a car with no oil and ignoring the red light—the engine will burn out and it will cost you a lot of time and money to fix.
What have I learned from being a carer, on the other side of the boundary? How can I learn from this?
• Colleagues will do their best, but may feel uncomfortable with the shift in dynamic. People generally avoid things that make them uncomfortable, so you may be left bizarrely alone. I will never walk past a relative again.
• There is nothing to do while waiting for your loved one to die but make tea, read Vogue, and go to the chapel. More could be done here.
• The more informed relatives are, the less time they will demand from staff. Communication is everything even when there are no answers. In a liminal world, it's reassuring to know that no one knows exactly what's going to happen. Limbo is the norm in end-of-life care.
• Any drop of human kindness from a professional is worth a million times more than a procedure done efficiently, however effective. The trainee doctor who dropped to his knees just to look into dad's face and smile has earned him our eternal love and gratitude.
• Continuity of care is important right up until receipt of the death certificate at the postbereavement meeting. Having someone who has known your loved one give this to you is important. This ending—leaving the hospice for the last time without them—is delicate and painful.
Persephone found a way to live in both the land of the dead and the living, but this is a difficult balance to achieve without, at some point, “hitting a wall, re-booting and re-assessing.” My hope is that others will acknowledge, learn, allow, and support each other with this important work-life-loss balance, so that we can continue to care with authenticity and compassion.