Reposted with permission; originally published December 2017 (DOI: https://doi.org/10.1111/jgs.15239) as an “Old Lives Tale” for the Journal of the American Geriatrics Society. “Old Lives Tales” share the stories and experiences that have instructed, saddened, or gladdened geriatrics healthcare professionals and, above all, taught us something about the care of older people. For more information, visit https://onlinelibrary.wiley.com/journal/15325415.
By Nancy E. Lundebjerg, MPA
When my Mom died on December 9, 2015, she did not go out with her boots on. Her decline had spanned more than a decade as she became ever frailer and her life more circumscribed. Our family journey was no more difficult than that of any family with a loved one on a downhill decline. You put one foot in front of another and follow a path you likely would not choose if given the choice.
This essay is about the very end of my Mom's life. Since first penning it (in March 2016), I have been grappling with the complexity of my emotions and with how early readers have responded to my story. Along the way, I have learned that most of the grief and bereavement literature focuses on the time after a death. It is as if the grief clock starts ticking when the heart stops beating. There seems to be little research on adjusting to dying as a process that, at least in my family's case, did not begin on the day my Mom died. The small body of literature on the incremental losses that come with illness and aging—as the work of researchers such as Sara J. Knight, Linda Emanuel, Margaret Stroebe, and Henk Schut exemplifies—has not bubbled up into our American discourse about aging in any significant way.
That leaves someone like me, the daughter who throws out unopened the grief literature that arrives in the mail, feeling a little reticent when talking about what I felt when my Mom died—because what I have to say is not how most people I know talk about the loss of a parent.
Let us break those feelings down: relief (first and last), guilt (about being relieved), a little sadness, and more guilt (about not being sad enough). I believe the range and cadence reflects that it had been a long journey with my Mom, one marked by many small moments of unspoken sadness. The ones that come with the need for a cane, the package of adult diapers, an atrial fibrillation diagnosis, a walker, no longer driving, falls and fractures, a commode by the bed, and the host of other things that come up as we age.
We engaged in a decade‐long conversation about diapers and canes and broken walkers. We made the adjustments that needed to be made to accommodate Mom's—and our—new reality. The elephant in the room was that every adjustment meant a little less control for my mother and a little more burden for us. We traveled this way as a family without ever speaking about the sadness of these smaller losses.
When my Mom died, and this is a hard truth to be honest about, I breathed a sigh of relief that the death that she—and I—had anticipated and awaited was finally upon us. This is so different from how I grieved when my father died—grief that would come upon me in waves. His was not a long journey—he was sick for 3 months, and then, in the blink of an eye, he was gone. The part of me that champions geriatrics health professionals thought that was how it should be. The part of me that was his daughter cried and then cried some more.
My Mom, a nurse and family caregiver herself, was pretty pragmatic about dying. We were like 2 peas in a pod when it came to that mindset. A typical conversation about her death:
Mom: “It won't be long now, I can tell.”
Me: “From your mouth to God's ears, Mom; from your mouth to God's ears.”
It was our Irish‐Catholic mantra, our own private joke. And that December morning, Mom's God finally heard our prayer.
Mom and I had a last conversation the Saturday before she died. She had called me to ask why she was going to the cardiologist. I was confused by her call because I had just arranged for her to see “her cardiologist” with the nursing home when she refused to see their cardiologist. I managed to hold my confusion in check and instead I said, “I thought you wanted to see him, he's so handsome.” She laughed and said, “He is!” with that lilt in her voice she had whenever she talked about him. Then she said, “No, I don't think I need to go, what would he do?” So come Monday morning, we canceled the car, the aide, and the trip to see the most handsome cardiologist in the world. And I talked with Mom's nurse about comfort care and letting her go.
That afternoon, they called me: “Your Mom is having a seizure and we are sending her to the emergency room.” An ambulance had been called and she was going to the emergency department (ED) whether she (or I, as her proxy) wanted her to go. I called my brother to alert him to go to the ED and get her sent back to the nursing home. Then I called the ED to say, “Don't send her to the bigger ED for further testing. Send her back to the nursing home.” And my brother and I got her back to the nursing home, and as she rolled in, she had some choice words about no one having saved her lunch. That same day, I finalized our instructions regarding comfort care and obtained a do‐not‐transfer order from her doctor.
That night she seized again. The call came: “Do you want her to go to the ER or do you want comfort care?” “Comfort,” we said, beginning the transition to the last 36 hours of my Mom's life. I arrived the next morning, we admitted her to hospice, and a local priest came to administer last rights. That evening, my brother and niece stopped by, and we chatted with my Mom an ever‐silent presence in the room.
When my brother and niece left, Mom and I were alone: me listening for her breathing and her breathing silently, in and out. The nurse would pop in to administer the drugs that kept her comfortable. The night passed slowly this way, with me dozing in the chair by Mom's bed. She opened her eyes once, but it was clear that she was no longer there.
When morning came, after speaking to the hospice nurse, I took a small break to take a shower and grab coffee. I joked that clean underwear was a big concern for my Mom, and she'd want me to be wearing some when she died. I kissed her on the cheek as I left and said my goodbyes.
She died while I was out of the room. And that, along with how I feel about her death, is completely OK.
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