(Christina is an end-of-life doula with The Dying Year. Her experience comes from working and training as a professional end-of-life doula, volunteering for hospice, and personal experience in end-of-life transitions. She completed the end-of-life doula and First Steps Advance Care Planning training in 2020. This article has been used with permission.)
In the last several months I have had the privilege of sitting alongside several caregivers from early on in their loved one’s end-of-life process through time of death and beyond. I learn so much every time. Every circumstance is different. Every soup of family dynamics has its own flavor. How each person, the dying person and those who love them, approaches this transition seems to be such a poignant illustration of each unique personality. With those who have been fiercely independent, death often seems to come suddenly … as if they fought as hard and long as they could, then collapse and die within days. Those who have had a gentle approach to life, well, often seem to die … gently. Caregivers who desperately want control often struggle with the lack of control that comes with end of life. Those who have always been go-with-the-flow types often approach the unpredictable flow of the dying process with curiosity and awe. All of this and all the opposites of this too.
But I have narrowed down a constant in the last few months. Those who fair best in these times do their due diligence in planning while simultaneously embracing the truth that not a single plan may play out. I sat with clients as they made pro/con lists, phone calls, delegated, designated, arranged spaces, made arrangements, etc. And then I sat with them in their frustration, sadness, and often humor when none of those things logistically mattered because something unforeseen popped up along the journey. I say “logistically mattered” because it seems like there can be something emotionally important and significant in this planning process; something that has value beyond whether or not the plans work out. People really have the need to feel like they gave their “best” to these end-of-life situations and concrete planning helps meet that need. I strongly encourage it. But the most touching moments are those when I get to witness a client’s surrender to the natural course of things … when the control and desperation subside and acceptance fills the void.
And with acceptance comes cleared space to be more present. What will hospice say during their visit today? I’m tired of guessing and researching. But I do know that I want to watch the sunrise with my momma this morning. When they say she’ll pass in “24-48 hours,” which hour will it be? I don’t know. No one knows. But I do know that I can breathe with her until she stops, and soak in her essence in this remaining time. This is not to criticize the questioning and the turning over of all the stones. Lord knows I did so much of that myself in my own situation with my parents at their end of life. I had to go through it to get to the other side. I had to do my due diligence and have so many things not go as planned to understand how to be more present in their death.
And so I sit and hold space for my clients on their own journeys. We make lists and phone calls together and then share tears and sometimes laughter when the plans of all those efforts fall apart. Then I sit with them as we build it all back up again simply by learning how to be fully present in the unpredictability of this precious transitional time.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
I would be interested in learning whether people who join FEN and other end-of-life groups do so partly because they have accepted the fact of death (“the natural course of things”) as contrasted with others. So far as I know, there is no research on this or on related questions, though we do have good research on the views, attitudes, and values of those who manage their own exits.
Beautifully written; carefully considered. Many thanks!
Ms. Wall writes poetry without rhyme, sharing gently her considerable knowledge of an extremely difficult, emotional topic. It is beautiful. Thank you.
Very beautifully written. Letting go and accepting what unfolds is a difficult skill to master but life, death, etc nudge us along to hopefully learn this reality. I enjoyed your article very much