Their Two Deaths
- Susan Nabors
- Mar 31
- 5 min read
Updated: May 19
Like many others, I learned about the work of end-of-life doulas (a.k.a."death doulas") when trying to find help for managing a loved one's serious illness ⎯ in my case, my mother's. Several years prior, my father had died after 15 years of battling blood cancer. His death had been slow, progressive, and yet, somehow, also fast and shocking.
Even with 15 years to prepare, he left us very little instruction about his end-of-life wishes beyond saying that he wasn't ready to die. In his last days, he became unconscious in the ICU and could not speak his wishes. My mom and I were left with the heart-wrenching task of guessing what he would want to do next. We were both advocating for what we thought he would want, but we were at odds about what that was. There simply had been no conversation with him while he was still able to talk to us.
I remember being concerned that my mom was too close to the situation to make an impartial decision. They were both, understandably, supremely exhausted. My dad’s body eventually clearly communicated to us that there was no path forward. Even with that clarity, there was always a tinge of discord when my mom and I talked about those final days and choices. I know now that our story, his end-of-life story, could have been different.
A few years later, my mom’s health had become dire following cardiac surgery and a new diagnosis of congestive heart failure. An only child, I rushed back to my hometown, 800 miles away, as I had done countless times before.
My mom was hospitalized for over five months at that time, thanks to a combination of a postoperative bone infection, complicating Type 1 diabetes, not-the-best kidneys, and osteoporosis, among other age and diabetes-related conditions. I am extremely fortunate to have a large community of support, including a superstar spouse, lifelong and "chosen family" friends, and a very involved extended family. And yet, I still felt very alone. Most of my peers had not been through this yet with their parents.
Her lengthy hospital stay resulted in me resigning from my job and relocating to care for her, only 5 months into my marriage. Mom and I were both miserable with the status quo, for our own reasons. I turned to the internet for help. I found The Conversation Project which I’ve recommended to others countless times since. It was during this exploration that I learned about "death doulas” who could help families like ours navigate these situations. After our experience with my dad’s death, I remember thinking I wish we’d had a doula to support us at the end of his life.
Armed with the idea that open conversation would help us better navigate her healthcare, I began asking my mom pragmatic questions about her goals and wishes for both her life and her death. I'm so thankful to say that she eagerly answered me head-on, openly, and honestly.
I've lost count of how many office visits, physical therapy and rehab appointments, endless wait times in emergency departments, and hospitalizations we navigated together over the next four years. While it often felt like the worst possible merry-go-round, and I just wanted off the ride, I was also careful not to wish the time away. My dad's death had given me the gift of perspective ⎯ even the hard and stressful times of illness were still times we had together.
She eventually recovered enough to be discharged from the hospital and she relocated to North Carolina to live with my husband and me, where she spent her last four years. The most treasured memories I have with her during that time are being in our shared garden together. I had spent my adult life avoiding her favorite hobby of gardening. (This was mostly due to a particularly memorable spring break during my teen years where we spent the week together hacking at the Mississippi clay with garden hoes to manifest a sprawling flower bed in our backyard.) I softened to taking on this gardening obsession of hers when she came to live with us, deciding to learn from her while I still had the chance. Growing things, planting things, she showed me, is about hope, not toil.
As I managed her medical care, I took a goal-focused approach into each office visit, before beginning any new prescription, and during each hospitalization. I would ask her: is your goal quantity of life or quality of life, what can you tolerate, what are your fears? She was always clear in her thinking: "some things are worse than death." She was referring to the long months she’d spent in the hospital with no end in sight, in pain and without the comforts of her home. We often talked together about what it was like to watch my dad die - not just his final day but the 15 years of decline and seeing him lose the ability to do things he loved. Life quality was the only thing that mattered to her.
One of the proudest moments in my life was when I heard my mom unapologetically take charge of her medical decisions and her death. In a way that my dad hadn't had the chance to do, my mom was able to clearly use her voice on her last day, saying, "No more, I'm done. I'm good." She died squarely on her own terms, fully in charge, and at peace with her death. I was overwhelmed by grief of course, and also by gratitude that she was able to speak for herself in this way and at this time. Neither of us had to agonize or guess at what to do next, and it was a gift for us both. I now realize that I had been doing the work of a death doula and my mom was my first client.
The lessons of my parents’ two very different paths to death are what fuel my journey as an end-of-life doula. My parents taught me so much in both life and death. They left me with a profound belief that having the hard conversations early and consistently can make all the difference at the end of life’s journey. Had my mom not been able to speak for herself at the end, I could have done it for her, because of the many helpful and intentional discussions we’d had. We planted the seeds and watered the garden so to speak, with the hope of seeing this end result.
This work, this intentional discussion and planning for the wishes and goals of death, and of life, are my life’s purpose now, and why I’ve created Myna House Doulary.
Special note of gratitude: I am grateful for so many resources and lessons I’ve learned throughout my continuing journey of being an end-of-life doula. I particularly want to thank Dr. Atul Gawande for his stunning, important, poignant book, Being Mortal, which gave me clarity in some of the questions my mom and I frequently discussed during her last four years. And to The Conversation Project - simply, you changed my life, and my mom’s.
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