End-of-Life Transitions of Sharon Rose: A Once-in-a-Lifetime Experience by Akhila Murphy, EOL Doula
As an End-of-life Doula for the past ten years, I have sat with dozens of dying people and their families/people/caring circles. Some meetings were conversations about death, some were consultations and advance planning. Most people feel death talks are uncomfortable or even taboo. I'm here to tell you these are the most important conversations of your life.
Over the years my mom, Sharon and I had talked a bit about death and her spiritual beliefs. She made her wishes known through advance directives and a dementia directive. She wasn’t sure there was a heaven, but she definitely had "spirit" guides around her.
When my mom began her dying process, we often stumbled to revisit those death conversations, partly due to her Lewy Body dementia, confusion, and difficulty speaking, but mostly due to my discomfort talking to my own mother about her dying process. She was now living with me and my husband who became her inexperienced 24 hour caregivers. These months were rough watching the changes and decline. Eventually she didn't know my name or that I was her daughter. She needed help with all activities of daily living.
One night shortly after mom had begun in-home hospice care, I peeked into her room at about 9:00pm and I noticed she was still awake. She was now bed bound, and I sat with her for awhile. Usually she didn’t speak much because of her difficulty with words. But on this night she spoke clearly and asked me an important question, “Will you walk me home?”
At first I wondered if she understood the metaphor of this question, so I said, “You are home mom. This is your home now.” She asked me again if I would walk her home. Then I asked if she meant - walk you to the other side? She said yes. My energy level heightened and I responded, “Of course I will walk you home. But if it happens that I’m not there, you can look for your spirits or look for family and ancestors to help you home. Is that ok?” She responded yes softly. There was some silence as she seemed to be thinking. Then she said, “I don’t think I can find my way.” I reminded her that her spirits have always been with her, they will help find the way. I believe she was experiencing Nearing Death Awareness. It turns out this was one of her final gifts to me: Speaking with clarity and sharing her deepest concerns about dying in a metaphor that I would understand.
Mom was now sleeping more and more. Soft music playlists played day and night. I began inviting my friends to come visit her. These were friends from the hospice Dying Vigil team, and a new friend whose husband died just two weeks ago. I am thankful for these visitors. It was good for mom to see new faces besides just me and my husband (her caregivers). She responded well.
Mom had been on hospice care for about seven days when the hospice nurse told me she was transitioning. In hospice terms transitioning means death may be just a few days away. Mom had discontinued eating three days ago and was now refusing sips of water. I was giving her meds by making a slurry and using a syringe. She only accepted milligrams of water by syringe. I tried to swab her mouth, but she clamped it closed. I just wanted to scrub her teeth and make her feel fresh. The next couple of days I ironed her shroud, and contacted my end-of-life doulas to be on standby.
Family came on what would turn out to be the afternoon before mom/granny died. The hospice nurse visited and said she was now actively dying, which means she will take her last breath soon. Our family took turns sitting with her while she did the work of dying. She did not open her eyes, or speak, and her breathing was jagged. She stirred a bit when someone new came into the room or when her great-grandchildren held her hand. It was a good visit. Half the family went home that night and my sons spent the night. At about 10:00PM I sat with mom watching her breathe, counting the seconds between breaths. Whispering love to her, telling her she will find her way. It's ok to go.
Mom died a few hours later. I came to her at 6:00 AM and she was no longer breathing. Her body was still warm and her face was very cool. I felt a sense of relief wash over my body and down into the earth below me. She was no longer tied down to this body that was no longer serving her well. I sat with her, held her hand and kissed for forehead over and over. I thanked her for her life and giving me life. I told her how pleased I was that she was able to find her way home. I told her we will now take care of her body and there will be no more pain.
My end-of-life doulas arrived, my brother arrived, my husband, my sons were present, and we prepared the room to begin the ceremonial washing, and caring of her body. This after-death care was a beautiful ritual of completing her life with loving care from her people. (More about mom's after-death care to be continued next month).