Updated: Feb 28, 2020
Companioning the Dying: say what?
Today I was interviewed by a college student about my work. She asked how I came to be called an End-of-life Navigator and what it takes to become a death doula. She wanted to know what the word 'holistic' means to me. We talked about training and certification, the range of services any given practitioner might offer and the differences between a 'concierge death midwife' (ala Forbes Magazine), the folks like me who work on a sliding scale, and the example of 'community care circles' where the very same support is given but no silver crosses palms. And we talked about the work of being with people who are dying, and supporting their caretakers.
But before I headed out the door and down the hill to the local university, I'd sat at my desk thinking about what it has taken to get to a place where I feel like I have insight to offer in a conversation about my profession. A conversation that inevitably touches on the vulnerability we all experience dancing at the edges with someone close to death.
Knowing what I know now, what would I put on my to do list if I was just beginning?
begin to think I know a thing and gain some confidence
say sure and dive into experiences I have no map for
find a way
choose words to name what I do before I even know what it is
ask - is it art yet?
And then, more choosing words, trying out awkward verbs because English can't quite contain the relational physics of every action when it comes to death. The word 'companioning' is one of these awkward verbs I thought I had some idea of a meaning for - in theory. And then this week I found myself wading in deep and realized, oh, this is what the word I chose means, this is how the action of companioning feels in my head, my heart, and my hands.
I'm not sure this is an action that can be taught to a person, like how to sew a dress or make a baked alaska. It's not like you're given a recipe or pattern with instructions. The mightiest of meditators are challenged when 'sitting' means to sit with death. Which may be why I've always rolled my eyes when I've heard the term, feeling it would be overbold to call myself a 'companion to the dying', because dying is a road I cannot traverse myself until some future time. And dying is a threshold we all cross alone. Thus the awkward verb 'companioning' comes into play when end-of-life warrants supporting players, when it turns out that death loves company.
There is a portion of the origin story I learned in order to become an End-of-life Navigator. The part where Bone Crow Woman perches high on the Jersey side of the Hudson River, where the water from Lake Tear of the Clouds high in the mountains finally sighs under the spanning bridges and into the the great harbor where Liberty is Queen. A place where you can see out to sea and see upriver and see all of Manhattan in one fell swoop of an ebony eye. In the story, Bone Crow Woman has flown a long way and perches, watching, resting in the present and leaning towards the moment when the time dance shifts and her ancestors come to perch with her for a visit. This is the place in the circle of her time where beginnings and endings are on the same continuum. She can feel the way her wings fold around her, cloaking the magnificent fragility that powers her in flight. In the story, when the ancestors come they gift Bone Crow Woman with the keys to blessings she will not remember the way to. When the next sun rises she flies the long miles home, carrying the keys back to her nest and tucks them in with her collected wisdom. Later, when there is a need around the bend in time, she will remember which key opens the way to the blessing that is necessary in the present moment. The story is a lesson to do the work of collecting wisdom, skills, and tools, and then trust that even if you have forgotten, they will be at hand when you reach to share them. And, because this is a Bone Crow tale, it also carries a generous winking Trickster reminder that the joke is on you because you never really know which key will be handy when.
Last week's office was a residential hospice house where the elderly client I've followed was dying. When our conversations began more than eight months ago with a review of his advance directives, he was living on his own and still driving. His son visited and they went together to see the lay of the land at assisted living, which was rejected outright. When I asked what was amiss that would cause him to die he reported torment from a painful hip he had opted not to replace years before, but no other chronic or terminal condition. Yet he felt he was done with his life and in his own words, wanted “to work on transitioning to a new dimension”.
Over a few months time he gave up his driver's license, began using a walker, and became more frail and forgetful. His temper rose with friends and he became more isolated. He had a series of falls, then finally one that led to the dreaded ambulance ride, followed by the usual few days in the hospital before transfer, along with a fractured vertebrae and the remnants of delirium, to a nursing home. Despite better than average care, he never felt safe in the institutional setting. When I visited him there one winter morning during his second week he looked at me and asked, “who do you have to talk to higher up to get me busted out of this place?” I called the son who called the residential hospice house and he was evaluated and transferred within days.
Which brings us back around to companioning the dying and wading in deep. At first I thought the swanky hospice accommodations and improved food would give him a bounce. He was quite frail and considered not likely to live long but with the now familiar hospice-shrug that indicates death comes when it will, He still had no specific terminal condition. He was done and his body was done too, and instead of a bounce once the delirium completely faded and he felt safe, he had what I can only describe as a steady fade. In the first week at the hospice house he liked to walk with assistance in the hall, to “ease the legs,” he said. He flirted with the nurses and aids. Then over the course of a few days he stopped leaving the bed and became less alert - though always polite if you roused him.
I went every day to sit with him for an hour or two. He told us point blank he was ready to die and hoped it would not take too long. He had no stamina for thought. He liked to hold hands, and would raise an eyebrow if I joked, but he spoke less and less. He did not want food, did not want more than a sip of thickened grape juice to wet his lips and wash the taste of pain medication from his mouth. One of the CNA's said he called her 'princess' and spoke to her in Spanish, grimacing in pain while she turned him to prevent bedsores. And then he had no more words in any of the languages he spoke; English, Spanish, or Hebrew. That was a day for laboring to shed the mortal coil, his legs pulled tight to his chest, his arms reaching out, his face sometimes contorted. I stayed longer, and could never quite tell if his pain was of psyche or of physique, or more an indication of the friction as one unwound from the other. As the spasm passed his hand would seek mine again, and we would continue one breath at a time.
I brought music to play in his room. Mozart, Paul Winter, and on my last visit, when his labors had mellowed and he could be still, Threshold Choirs singing over the internet via my phone laid close on his pillow. With both hands curled on his chest and his knees still pulled up to one side he bent his ear towards the harmony of women singing together, 'lay your body down, let go'. I got a call in the early evening of that same day to inform me that a nurse was quietly reading poems in his room when he drew his last breath and died.
Death arouses curiosity or recoil, or both. People ask, “what is death like?” Those of us who walk this way will tell you that while there may be a variety of types of death, no two are the same. If you are going to be working out what 'companioning the dying' means for you, you may find that it depends entirely on what it means to the people you help to walk towards death. You will learn things about them along the way, maybe some you'd rather not know. You will learn how to set it all down so that they can too. And you will learn things about yourself as you walk back again towards life. In the great inhale and exhale of being, companioning means being present in the moment. Nothing more, and nothing less. And yes, it is an awkward verb.
We are helpless at death, someone has to turn us and wipe us and chase away the body's pain. We hope not be alone and yet still we know the inevitable labor of letting go, and going, is ours alone to accomplish. What I learned this week is that I can sit nearby and hold hands awhile, swab lips, and play music close to an ear when hearing is the last sense to go. I can notice the labor of each breath, each swallow, and be witness to the afterglow of what this person would have called his “leap to the next level.” A supported leap that he was able to make in his own time. Companioning is an action that, it turns out, means different things in different situations. The keys in the Bone Crow tale are part of my wisdom collection and will rise to my head and hand and heart when I reach for them to share.
So there you have it, Theydies and Gentlethems. If you are planning to work in the liminal boundary lands here is a glimpse into an eight month journey towards the dying room. However you embrace or wrastle with your own mortality, companioning the dying will bring you (as my own old dead dad would say) toe to toe and knee to knee and heart to heart, with Death. One sweet breath at a time.
thoughts? send me an email at firstname.lastname@example.org
photo credits: this photo by Angelo Ebenal @ unsplash
top photo by Kevin Mueller @ unsplash