Thousands at His bidding post o’er land and ocean without rest;
They also serve who only stand and wait.
For the last several years, I have been an End-of-life Doula with a local Hospice. We are a team of volunteers who sit vigil round the clock with dying patients and their families in the final hours and days of life. These days, I’m not sure I want to continue in that capacity.
Initially, I felt called to this work. I had companioned my closest friend along her cancer journey for several years, attending many doctor visits as the disease progressed and her spirits flagged and providing ongoing emotional support. And comic relief—gallows humor being absolutely essential. While we continued to hold out hope, the outcome seemed certain even if the timing was not. During the last two years of a five-year illness, her oncologist forewarned her on several occasions that she probably had only two to three months to live, but her decline remained slow yet, indeed, steady. (Patients are put into Hospice Care when they have less than six months to live. Bettina was on Hospice for eighteen months.)
After three plus years, I was worn out. Other friends stepped forward to take on the primary support and care tasks. My own life was at a standstill—actually, it was in a kind of recession. I had been suffering from a (then) intractable thyroid illness that had left me chronically fatigued for several years. Chronic fatigue (note that I am not capitalizing the term; it was not the disease identified by the acronym CFIDS or Chronic Fatigue and Immune Deficiency Syndrome) is debilitating in a number of ways. It was not just that I was tired. I suffered from a level of exhaustion that affected body and brain and which no amount of rest or sleep could quell. I lived that way for years (how I healed myself is another story) and finally closed up my two-year old business and gave up the house I was renting because I could no longer carry them. I moved into a furnished room in a friend’s home after placing all of my belongings in storage.
As I slowly improved during that hiatus, I began to prepare to return to a more normal life. But, in the words of another favorite poet, Theodore Roethke, “Great nature has another thing to do to you and me.” Instead of returning to normal, with Bettina still declining mind you, I was called to the next task of waiting and watching. My mother suffered catastrophic complications to cardiac surgery—her heart ruptured after her aortic and mitral valves were replaced, a necessary surgery. I got on a plane in California in July of 2007 and flew to New York the next day. I remained there for eight months, in hospitals daily, only returning home for brief visits, the first time to gather more clothes for the autumn and winter and the second time to attend Bettina’s memorial service.
The time with my mother was far more wrenching in its dramatic ups and downs, and it’s outcome long appeared far from inevitable. After forty days in ICU and eleven weeks in the hospital where she had had the surgery, she moved between rehab centers and short-term acute and long-term acute care hospitals, relapsing into intractable infections that finally took her life two days after returning home with Hospice to die.
I learned throughout these years of illness and companioning, how important it is for the sick and dying to have company. But it is not only the ill that gain from such company; it is the one who accompanies. To hold another’s hand, to be the shoulder to cry on, to bring laughter through the tears, to ask questions of doctors, to help sort information and make decisions, to crawl into bed and lie beside the afflicted—these fill the giver as much as the receiver. I am ever grateful for the hours I spent with both Bettina and my mother. Bettina, bless her, taught me, through her suffering, through her example, how to be with my own mother. It was Bettina’s stories of having her grown sons crawl into bed with her that inspired me to crawl into my mother’s hospital bed. The first time I did, a nurse came into the room a few minutes later to perform various ministrations. I moved out of her way and back into the chair beside the bed. A couple of minutes after she left, my mother said, “Get back in here!” I quickly complied, a smile of welcome surprise on my face.
Although over the past months I had become much more physically intimate with my mother’s body, helping to change dressings and clothing, massaging her feet, and helping her with hygiene (she had become bedridden), my mother had always been physically rather conservative. Yes, there were hugs and kisses at partings and returns, especially since I lived across the country, but even massaging her feet was nothing I would have imagined she would enjoy or allow before this period. All of her usual emotional barriers had been stormed by the illness and by the steady presence—which I know she did not expect—of her children. She opened her heart wider than I had ever known it to be open before. And I, who had the capacity and current life circumstances, reaped the most benefit, though my siblings had their opportunities as well.
After that, I crawled into bed on a regular basis. I sat tucked in beside her mere days before she died and about a week after a series of small but increasingly debilitating strokes made it difficult for her to form sentences and I asked, “Are you afraid?” She said simply, in the few words she could push out, “No. Not afraid.” That moment and the hours that I held her in her bed, both before and after she died, made an indelible mark on me. I am deeply grateful for and gratified by that time with her.
So, when I read about an End-of Life Doula program beginning through one of the local hospitals, I knew, simply, that sitting vigil was something I could do. Two years later, I became an EOL doula. I have been with three patients and their families at the times of their deaths and in the hours that followed. I stood with my hand on the shoulder of a middle-aged only son as he nervously stood by his mother, who had only been sick for two weeks but whose death was fast approaching. He did not know what to do but desperately wanted to do something. So I whispered words of encouragement to him, told him to tell his mother he loved her, appreciated her. At each brief sentence I spoke in English, he bent down and whispered into his mother’s ear in their native tongue. He was holding her hand and speaking to her in hushed tones minutes later when she passed. I walked another patient to the doorway between the worlds by my quiet presence, although my shift had ended and I had passed on his care to a fellow doula forty-five minutes before he died. I know I made a difference at these and other deaths.
Yet, after my sister died unexpectedly last year and I held her hand as she passed just a few minutes after we removed her from life support, I seem to no longer have it in me to continue. I took a six-months leave from volunteering, but I was hesitant upon my return. I still have not felt quite ready to companion the moment of dying. I have only done a couple of vigils since my return to active volunteering, but those patients, to my relief, did not die on my watch.
Although my sister and I were not “close” per se—she was developmentally disabled and I had become one of her caregivers in later years—her death seems now to have been a last straw. After her passing, though I returned to vigils, I found and find myself less emotionally available for the work. I think my decade of illness and death has worn out its stay, and it is time for me to take a sabbatical from it, until such time as it pulls me in again, perhaps when some beloved needs me to stand and wait with them.
As it is, I will sit vigil tonight with a dying woman and her family. I will be there in the wee hours, from 10 p.m. till 2 a.m. We overnight doula team members seem to be present at more deaths than our daylight and early evening counterparts as souls tend to slip out in that stillness more often. My patient may pass with me, and tonight I am prepared for that. And then, I will see. Maybe this will be a new beginning. Maybe I will reconnect to my calling. Or maybe life has other things to do with me…