I recently sat at the bedside of a client who was showing many of the physical signs of a dying person. She was what is termed as actively dying. She was no longer eating or taking liquids and was sleeping all day and night with very brief periods of consciousness. She was receiving small doses of morphine to help with her agitation and calm her breathing. To see her, you would think that she was restfully sleeping.
I had been seeing this client, whom I will call Carolyn, since she was placed in Hospice. Many of the clients I see reside in skilled nursing facilities. Since Carolyn was a Hospice patient, she had a Hospice physician, a nurse, a music therapist, a social worker, a chaplain, and then me, an End-of-Life Doula volunteer assigned to her case. Carolyn was very elderly, born in 1922, and was suffering from several health conditions as well as advanced dementia which made it difficult to have lengthy and meaningful conversations with her. Since she was bed-bound, my visits would be bedside.
Our visits would consist of me chatting with her about the goings-on in the world around her. I would comb her hair and gently massage a thin layer of goat's milk lotion on her hands and feet. I would also read the contents of old cards she had received from friends and play music that I thought she might enjoy which included hits from the 1940's and traditional Catholic standards. Staff would come in and tell me stories about Carolyn, often bringing her into the conversation, with "Remember that, Carolyn?" or "Isn't that right, Carolyn?" On "good" days, she would respond. Her roommate, Devon, was surely an angel sent to be with her on this last part of her journey. She and Carolyn had spent enough time together that they had shared stories of their life. Devon would make sure that Carolyn was comfortable and let the staff know when she thought that Carolyn required assistance. It turns out that this old woman before me with legs contracted up around her chest; skin and bones, led a full life filled with travel, friends, a vibrant career, and was a caretaker for her parents. On her bookshelf held small photo albums of holidays, her poodle, Coco, and Carolyn as a young and not-so-young woman. A life lived on her terms. At least as far as I could tell. Although many of our visits were with little communication, I left feeling like I was with a friend. I cared deeply for her, tucking her in before I would leave.
After several months, I received notification that Carolyn was now considered to be actively dying. The active dying stage is a span of time anywhere from a few days to the person's last breath where the person shows imminent signs of death. Carolyn was given small doses of morphine to help with the agitation and calm her labored breathing. On the outside Carolyn was peacefully resting.
I continued my visits, but they looked different. I brought in small battery-operated candle votives that were placed on her window sill. I stayed for hours playing music and reading from the books on her bookshelves. I continued to talk to her with lively and quiet conversation and prayed with her. I said the Holy Rosary for her even though " that's not my thing", and provided her with calming Healing Touch. Days turned into a week. Staff came in to check on her and marveled at her fortitude, but also shook their heads in concern. Several of the staff, including myself, spoke gingerly to Carolyn, giving her permission to let go. Even with our encouragement, she held on as if suspended between two worlds. All signs pointed to "go", yet something seemed to be keeping her here.
Even in death, we have free will. People have been known to defy the odds of a death prognosis by living far past their predicted death date, making deals with their Creator to dance at a daughter's wedding, hold a baby not yet born, or touch the face and say "I love you" to a long seen loved one. These things happen. I began to think that Carolyn was waiting for something, but I did not know what for. I knew some of Carolyn's story, but obviously, I didn't know all of it.
Each day for hours, I would sit at her bedside. On one such day, I leaned into her bookshelf, looking for some clue as to what could possibly be keeping Carolyn from moving on. My eyes settled on a book of poems by Walt Whitman. I slid the book from the shelf and fanned the pages looking for a marked page or folded corner. Sure enough, a small bookmark was placed by the poem, As I Ebb’d with the Ocean of Life, which captures the idea of confronting and coping with uncharted terrains: the words, are so deep and poignant at such a time. A little while later, her Hospice nurse came into the room to check Carolyn's progress. She too commented on how unusual it was that she was still here. She further told me that Carolyn had one family member who had stopped visiting her after they had had a disagreement with the facility, and how it was a shame that they had not come to visit even though they were notified that Carolyn was close to death. And there it was... she was waiting for a visit.
The following day, I again sat at Carolyn's bedside. I knew the hard truth that her family member was not coming. So after praying with her, I leaned in and began talking to her. Surprisingly, she turned her head and opened her eyes as if looking for me. I knew that I had her attention. I quietly told Carolyn that she was dying and that unfortunately, her family member would not be visiting her. I also added not to worry because she would see them again and to go with her spirit family who were waiting for her. She continued to look at me although I am sure she could no longer actually see me. I brushed her hair back until she closed her eyes once again.
That night, as I reflected on our visit, I couldn't help but wonder, if telling her the truth was the right thing to do. Did she hear and understand what I had said and was what I said too much truth? She had to know that she was dying as she had told her roommate months earlier that she "wanted this over." Would the truth set her free?
Surprisingly, the next morning I got a notification from Hospice that she had passed less than twelve hours after my visit. I'd like to believe that Carolyn heard me and made the choice to let go and move on. No more suffering for her. The truth just may have set her free.
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