Turning an Emotional Corner: One Doula’s Story of Service
by Cindy J. Kaufman
“We didn’t know how much we needed you until you were here,” my client’s son, Mark, said to me on the day his father, John, died. This validating sentiment has been relayed to me time and again in my work as an End of Life Doula (EOLD). Oddly, it is difficult to describe what I can do and bring to a dying person and their caregivers. Words cannot adequately communicate the emotional and spiritual support an EOLD can provide at the end of life. I describe my work as filling the gap between what Hospice does and what the caregivers provide. Unfortunately, many people are not aware a gap exists; for those that are, most don’t know how to get it filled.
In an initial telephone conversation with Mark, he explained that his father, John, (their names have been changed to preserve their anonymity) had recently been diagnosed with Stage 4 kidney cancer and had a few months to live. They had already begun with hospice services and didn’t know if they needed any other help, but Mark’s girlfriend referred them to me for additional assistance. Mark described his father as “rather crotchety,” his way of warning me that his father might not be receptive to a stranger coming in to offer help, help they didn’t understand, and help they were not certain they needed. Two and a half years earlier, after retirement and his wife’s death, John had decided to move to Denver to be close to Mark. The two of them bought a house and had lived together since. Mark was an only child and both men felt they would be good roommates. Now, Mark was his dying father’s sole caregiver. We made an appointment for me to meet with them.
When I arrived at their home, Mark was there with his aunt who was visiting from out of town. John came out of his bedroom using a walker. Mark explained that his father had become mostly bed-bound due to weakness. But, John, who Mark described as a “true gentleman,” had insisted on getting dressed and coming into the living room to meet me. After introductions, John quietly settled into a recliner. The aunt began, “we aren’t sure exactly what you do, but you probably have an agenda, so we’ll let you take it from here.” I assured them I had no agenda. I briefly described what EOLDs offer—companionship, respite, life review, legacy work and vigil planning—but I wanted to hear what their needs were, and how I could assist. During the ensuing conversation, John remained quiet and didn’t make eye contact. After a short time, the son and his aunt excused themselves, offering John privacy to speak with me.
As soon as we starting talking, John’s demeanor completely changed. After seeming stoic and uninterested, he became tearful and honest. He spoke about his fear of dying, not feeling ready, and concern for his only son. Our conversation was short, but John and I began to build a foundation of trust for our relationship. I asked John if he would like me to come back. Without hesitation, he said, “Yes, I would.” To which I replied: “Next time, there is no need to be so gentlemanly,” I said smiling. “You can stay comfortable in your bed.”
I had the honor of working with John for the next month. I visited two or three times a week, offering respite for Mark and companionship for John. I became a confidant for John, doing life review and allowing him a safe space to process his emotions. John was not interested in legacy work, although I offered ideas as things came up. He also did not want to plan a vigil, but I suggested such things as hanging pictures of his beloved wife on the wall so he could see her, which he had Mark do.
On the Wednesday before John died, he fell while trying to get to the bathroom. This fall led to his rapid decline. Early Saturday morning I received a call from Mark that his father was no longer communicating. I drove to the house prepared to sit vigil with John. John had been afraid that Mark would be there alone when he died. Although I could not guarantee it, I had told John that I would do everything I could to be there with Mark when the time came. Fortunately, some family members had come to visit John that morning. Mark would not be alone should the vigil go longer than I could stay.
I arrived and let John know that I was there. He did not respond. Within two hours, John began transitioning. We gathered around the bed as Mark told his father that he loved him and assured him that he would be okay without him. After John took his final breath, I looked around the room for his dog and found her laying up against the wall under his bed. I lifted her onto the bed so she could see John was gone. She looked at him and then turned away in understanding. We stayed at John’s bedside for hours, sharing stories, crying, and laughing too. The hospice nurse came and documented John’s death. The funeral home came for transport. I respectfully escorted John out to the van with the attendant.
The month following John’s death, I met with Mark to follow up and provide grief resources. Mark told me his father always looked forward to my visits, even when he wasn’t feeling well and didn’t want to see anyone else. He felt his father “turned an emotional corner” from the first day I arrived. He said that I created a space in which John could smile again and find peace in his final days. As for Mark, he said I had made his father’s dying process a journey, rather than an ordeal. As for me, I felt privileged filling the gap for John and Mark, tending to the sacred space at the end of John’s life.
By—Cindy J. Kaufman, MEd, EdS
Cindy is an INELDA Certified End of Life Doula, practicing under the name, HeartSpeak End of Life Companioning LLC. She is based in Denver, Colorado. You can contact her at 720-989-1929, [email protected], or at www.facebook.com/heartspeakeolcompanioning.