Christina Wall is an end of life doula and is trained in First Steps Advanced Care Planning. She specializes in working with adult children who are in caregiving roles as well as caregivers to patients with dementia. She lives in Ann Arbor with her husband, Alex, daughter Emmeline, and twin sons Oliver and Evan. Christina teaches part time at Eastern Michigan University, enjoys playing the piano, cooking, and cuddling with the family dog, Finn.
By Christina Wall
I will never forget the moment when I walked into the hospice home for the first time to see my dad. A palliative care doctor recommended hospice care the day before and he was transferred to this hospice home from a rehabilitation facility. I had been his primary caretaker throughout his rapid decline—navigating the hospital scene, confronting doctors, and aggressively advocating for his care. This situation was without a doubt my comfort zone—having concrete things to fix and fixing them. I was confident in my abilities, and due to an extensive history of trauma, seemingly thrived in the chaos and intensity of the situation.
Then the fixable things became unfixable. My final “fix” was asking the palliative care doctor to complete the hospice evaluation and assist in getting my dad transferred to a new facility. Just like that, I was thrust out of my comfort zone and into a world of quiet observation. The thing I would be quietly observing and holding space for was the impending death of my father.
I sat in the parking lot for a long time before going in to see my dad that day. I believed I was about to embark on something seemingly impossible, yet inevitable. Vulnerability, finitude, and quiet all resided inside that building and, in my everyday life. These things had become my nemeses. I envisioned what would happen to me the minute I saw him in his bed. My prediction was that I would shake (and potentially vomit) from anxiety and then promptly melt into a puddle onto the floor. I would be reeling from the recent revocation of my fixer role while simultaneously becoming the one that needed to be fixed—all resulting in being unable to be present for my father during this precious time. I sat in the parking lot, envisioning my worst nightmare.
I eventually opened the door to the building. It was quiet and vulnerable and there was a definite sense of finitude, just as I predicted. Yet, I have never been caught so off guard in my life. My soul was at peace before I even got to my dad’s room. I stood at his entrance.
“Hey, Dad.”
“Hey, Baby.”
I was still his 44-year-old baby. But there I was—not shaking, or vomiting, or melting into a puddle. I was fully present in a way that I had never experienced. Everything that was important rose to the forefront because there is no time for anything else in the face of death. And the reality of it is that we are all facing death every day. Modern society has stripped us of many of the reminders of this—for example, products that develop insatiable cravings for youth and normalized quests to seek out all life-saving treatments regardless of quality of life in the process. This is to our great detriment because as I spent time with my dad in that hospice home, I began to learn that the awesomeness of life gains clarity while learning to be present in death.
I wanted to learn more, so I became I hospice volunteer. I always find it amusing when people react with “that is so generous” when I tell them that I’m a hospice volunteer. Truth be told, it is quite a selfish act for me—or at minimum, a win-win for the patient and me. I give them my full presence and in return…well, I end up getting something similar. Magical, really.
Within about a week of this day with my dad, just as I was resting on the coattails of awe and peace, my mom was officially diagnosed with dementia. I quickly began to see that my newly found “death is awe-inspiring and something to be embraced” approach was potentially a little naïve or at minimum, not inclusive of all end-of-life experiences. Dementia is not beautiful. I was not awe-inspired as I witnessed the cognitive decline of my mother. It was a sad, exhausting experience filled with devasting loss over and over, and in so many ways. My dad died in March and by April, I had gained guardianship and conservatorship through the court system and placed my mom in a memory care facility. She developed bladder cancer in addition to her dementia and died a couple months after being placed on hospice. Covid took her out in the end. That three-year time from my dad’s death until her passing was potentially the most challenging of my life.
These experiences, both personally and as a hospice volunteer, drew me to this work as an end-of-life doula. I took the training with Merilynne Rush in early 2020 and then promptly put everything on the back burner while I cared for my mother in her last, intense year. The opportunity to work with my first client in the doula role came just 12 days after my mom’s death. I had to answer the question for myself, “Is this too soon?” It wasn’t. The timing was perfect. There is something comforting about using the knowledge gained through heartache and joys to help others. And every time I have been able to provide some gentle guidance and relief since that first client, I also heal a little.
Dying can be challenging, exhausting, sad, beautiful and awe-inspiring. The bulk of my work as a doula includes helping caregivers untangle, the often overwhelming, logistical mess of end-of-life care. But the deep work includes helping caregivers and their dying loved ones to accept and embrace this profound paradox of the dying process… to help them feel not so alone as they don their armor and become courageous, grounded end of life warriors.
Learn more about Christina at cwalleoldoula.wordpress.com.
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Though Boo wasn’t my “real” grandfather I could not miss the realness of his final days. Despite the sticky doorknob, the smell of last week’s lunch, dead flowers, and the junk pile obstacle course, I made my way to his bedside. The clutter used to spark an uncomfortable itch throughout my body, but I’d accepted it. His 98-year-old body was tired, but his spirit was very much alive as he pondered the end.