Transitions and being present at end of lifeMelissa C Palmer, LCSW, ACHP-SW, APHSW-C, JD Oct 10, 2023
July 12, 2023 at 6:05 am. The time my grandfather left his body and transitioned to death and whatever else is out there.
But the story starts a month before…
Around Father’s Day, my mom called to say that my grandfather had another fall, and he hit his head. She also said that he is looking jaundiced and retaining fluid. Even though I had not seen him yet, I had a feeling (as we often do when working in palliative care and hospice). Because he was 96 and cannot hear well, I decided to write him a letter telling him how much I love him, how significant our relationship was for my childhood, and all the things I learned from him. He texted to say he received the card and my mom shared that he was very pleased to receive it.
About a week or so before I planned to visit, my mom and I talked about Gramp’s quite rapid decline in the past several weeks; he had gone from driving (in early June) to needing a cane, supervision for many activities, and feeling constantly short of breath. My aunt Lynne and mother were taking turns spending the days with my grandfather to prevent falls and to keep a closer eye on him. She sounded exhausted. Mom also started a journal documenting his weight, symptoms, who has visited, and his overall functional status. Worried that time was short, I called his PCP and a local hospice agency and asked for him to be enrolled. His primary physician didn’t think he needed it “yet” but they wrote the order to humor me.
My annual trip to visit my family in the Northeast is usually scheduled in advance for the week of July 4th. My son and I flew out to visit, and I quickly realized that Gramp probably had days to weeks when looking at him. Because of the holiday weekend, hospice did not come for the enrollment visit until the 5th, and they kicked into high gear because they were seeing what I was seeing. We quickly had DME, medications, and a CNA scheduled for bathing within the next 24 hours. My aunt Bev came in from out of town to help us care for Gramp.
After we started receiving hospice services, I started a Caring Bridge website so that our 200+ cousins and other loved ones could check in to see what was going on with Gramp in a forum where my mom did not have to answer a blizzard of phone calls per day while also helping to care for her dad. We also used our Facebook family page (yes, we are the FB generation) where we could post pictures and loved ones could reflect and tell stories they remember about Gramp. Having family and friends write pages of well wishes, stories, and expressions of love lifted our spirits. Two of his three living siblings (including his 98-year-old brother/best friend Arthur) were able to visit at the house, and he spoke with his other brother in Arizona.
The night before he died, he was sleeping in the hospital bed that arrived earlier that day. He had refused any equipment until the final few days, because he was a proud WWII veteran and man’s man who did not need anyone’s help. My mom, dad, aunt, cousin and I were sitting on the back porch with the minister just after he prayed with my grandfather, and we saw a Cardinal flying around our heads, perch on the porch and look straight at us all. We knew time was short and Gram was there to shepherd him to the place after death.
The last 48 hours were brutal. Although we had hospice on call for us and had daily nursing visits, Gramp’s multiorgan (liver, kidney, heart) failure caused him to fill with fluid, and he became increasingly short of breath. We gave him medications, but we were behind the curve in order to catch up with his symptoms. Until the last 24 hours, he was still trying to maintain dignity and independence, but terminal delirium challenged his safety. On Monday night, while my aunt was sleeping, he got himself to the kitchen and drank all the fluid he could find. She woke up to find him on the floor, and my mom and I came from next door to help him up.
We took shifts taking care of my grandfather in the last week; my mom and I (along with my very strong cousin Mike) spent his last night providing him the physical care he needed to make his transition as smooth as we were able. However, his shortness of breath became increasingly more distressing to family members, and we tried (seemingly unsuccessfully) to help him be more comfortable by moving him and increasing doses/frequency of medications. During my grandfather’s last hours, my cousin looked at me across the hospital bed and said, “Gramp would hate that we have to care for him like this”.
When we all were completely exhausted after 24 hours of constant care, my dad (who is my grandfather’s honorary 5th child) sat alone with my grandfather, held his hand, and was with him when he finally left his body. I later told my dad that Gramp probably sighed in relief when he showed up, and all the women stopped clucking over him, so he could die in peace.
My mom and I worked together to schedule the funeral and wake, to write the obituary, and to organize the things after death that she is responsible for as the executor of the will. I can only imagine what that will feel like when I am acting as the executor of my parents sometime in the future. Mom expressed both emotional and physical fatigue, and she is still in a fog. My mom’s organizational prowess helped her work through the myriad of lists for “to do” when a loved one dies. She still has several pages worth of tasks related to Gramp’s death, which is a daunting task.
My take aways from Gramp’s transition apply to my life both as a palliative care social worker and loved one. We tell people that hospice can help with a peaceful death; this is true in some situations, but in others, in spite of best efforts (and depending on the will of the person dying), a person’s dying process can be distressing and incredibly physically demanding. Not unlike childbirth, most people enter and exit into this world in not a single breath but a process that can take hours to days.
Today we all gathered together, prayed for my grandfathers’ journey to the next world, and told stories of his extraordinary and sometimes eccentric life. After this experience, I am in awe of those who provide this care to their loved ones and also those who work as hired caregivers. I am also grateful to have a cohesive and cooperative family that rallied to be together to provide care for my grandfather in his final week of life. My hope is that Gramp felt that we honored his wishes to stay home, be with family, and be as independent as possible until his last breath. I am grateful to have such a visceral experience with my own loved one that was challenging both physically and emotionally; although every death is different, I have a much deeper appreciation of how loved ones travel this journey with the dying person.
Here is an article that highlights the experience of loved ones helping their person transition to death: