I was sitting in a doctors office with my husband, who had just been diagnosed with stage 4 kidney cancer. I remember being so far inside my head that the doctor’s voice came to me from the bottom of a deep well — the individual words weren’t discernible.
It was the start of a time when my world was frequently unintelligible and upside down. At first it was a rollercoaster ride of diagnoses, tests, appointments with specialists. Then it was about sorting through treatment options from various approved drugs to clinical trials.
At some point all that wound down. I found myself sitting at my husband’s side as he slept more and more of the time, before his death on December 25, 2013.
We were lucky enough to be in a hospice house, and we were fully supported medically. But as his death drew near, I became aware that I was woefully unprepared spiritually to enter into this experience with him. I didn’t know it then, but what I needed was an end-of-life doula to help me be a companion to him.
An end-of-life doula is a non-medical person who provides physical, emotional and spiritual support at the end of life. Doula is a Greek word that means servant. I needed someone who had confidence, a calm presence, wisdom gained from experience with dying, and a way to help me call forth the sacred nature of dying.
The most important first step to prepare for death is to become comfortable with your own mortality. It can be as simple as looking for death wherever you are. It is about noticing that death is a natural part of life and that it is always with us, whether it is the dead flowers in your backyard garden, or the wooden furniture in your house, or what is on your dinner plate. There are also guided visualizations you can do to imagine your death.
After you are accustomed to thinking about death, you can start to have conversations with loved ones about what is desired for the end of life.
For example, my boyfriend — who can be a bit reckless — almost took his head off when a cleat he had attached to a rope pulled out and went whizzing by his head. I spent the rest of the day envisioning what would have happened had he been taken out by that blow to the head.
I imagined laying him out in his bed on his houseboat and having a home vigil where his friends and family could say goodbye. I pictured his two children curled up on the bed beside him, talking to him and holding his hands. After the vigil, I visualized wheeling him out to the end of the dock so he could say goodbye to the Mississippi one last time. We would pause there and compose a short poem of thanks for his life. Then we would sprinkle the dock with flower petals. Being serenaded by David Bowie, we would wheel him to a waiting hearse. After his water cremation, we would sprinkle his remains in the woods behind his childhood house.
I shared this vision with him and he said, “That sounds pretty good.”
Because we have been in the practice of outsourcing death to funeral homes for the last 100 years, we get shy about owning it. End-of-life doulas know how to make this experience meaningful and deeply our own. I decided that in this next stage of my own life, I wanted to become trained as an end-of-life doula. There is not yet a national certification, but I trained through New York City-based Doulagivers for an intensive weekend, and took classes online. I volunteered at a hospice for a year.
My advice for anyone: Create rituals for saying goodbye. Open the sacred by clearing the space of clutter and keeping small talk out of the room. Add flowers, candles and objects that are meaningful. Add soft lighting, and music if desired. Be creative, write your own poems or songs of thanks and remembrance.