I have always had a weird relationship with death.
My mom worked at a nursing home as a nurse, and one of my favorite childhood activities was visiting work with her after school. I would roam the halls of the nursing home, getting cookies from Mrs. Alley, playing in Clara’s room, or sitting with Blanche while she caressed her baby doll. Death and frailty were constant in the nursing home. I would show up to find Roxy, the spunky 103 year old, had decided to up and leave this world. Then Clara left, then Blanche. It never occurred to me to be sad or to think about where they went. They simply weren’t there anymore and new elderly people came to take their place. I never gave it much more thought.
The only other place I heard about death was church.
In my church, death was discussed in terms of fear.
“People you know and love that aren’t saved will die and go to hell, no matter how good they are.”
This particular idea, when I first learned of it, caused me to cry and plead with my mom to write to all our relatives to beg them to be saved by Christ. I anxiously thought about my school friends, my neighbors, all doomed to be tortured in hell. I began to worry about my own salvation and being left behind by my own family. These were the thoughts that plagued my 10 year old brain.
When I got to high school that changed. I began to fear being old more than being dead. I even began glamorizing dying young after listening to Time to Pretend by MGMT. I smoked Marlboro 27s and drank too much and tripped acid and took pills that looked fun, and closed my eyes while my drunk friend drove me home. It was the only time I ever remember feeling truly invincible.
The invincible feeling was fleeting. My fear of death returned in college after meeting Nick. I didn’t want to die young anymore and my fears once again began to shift. I feared losing Nick, losing my memories.
In almost every way I have known death, I have feared it. I have not found solace or comfort in death. Even in high school, I didn’t *not* fear death, I just feared getting old more. Then the 2020 pandemic hit. I distantly knew three people that died in the early months. I watched the president eschew responsibility and create a political divide over a public health and safety issue. I called my family constantly trying to reinforce the importance of social distancing and masks. I feared for their deaths on a daily basis.
There were times when I would just be lying in bed paralyzed with fear that today was going to be the day my mom decided to take her neighbor’s hydroxychloroquine “just in case” or that taking my grandparents to a maskless church ceremony was more important than quarantining. Fortunately neither scenario came to fruition.
As I watched the national death toll climb and the mask mandate in Florida fail to come to fruition, I felt death and sickness inevitable. People were not only dying from COVID-19, there were now stories of survivors with long-COVID with irreparable damage to their lungs and heart. As I grappled with the anxiety and fear I felt, it occurred to me that I feared more than just death. I was afraid of becoming frail and afraid of the tremendous losses that aging brings. I was afraid of losing my family, but I was also afraid of making important medical decisions on their behalf. No one ever covered this subject in school or prepared me for my own end, let alone my mom and my grandparents.
I set out to confront my fear of aging and fragility. I read Being Mortal by Atul Gawande, which talks about the West’s deep discomfort when it comes to discussing or confronting what happens at the end of our lives. We place our elderly out of sight and try very hard not to think about ourselves going to a nursing home or becoming frail “one day.” When that fateful day inevitably arrives, we are woefully unprepared to face it or to manage it because while we have spent our entire lives avoiding the discomfort of thinking about frailty, death, or terminal illnesses.
In Being Mortal, the author discusses a series of questions you can ask your loved ones facing terminal illness:
What is your understanding of the situation and its potential outcomes?
What are your fears and what are your hopes?
What are the trade-offs you are willing to make and not willing to make?
And what is the course of action that best serves this understanding?
These questions seek to understand the terminally ill person’s goals, values, and dreams under the current circumstances. Self-pity and sorrow make way for feelings of dignity and empowerment.
I think it is important for each person personally facing terminal illness or for making decisions for people with terminal illness/aging to read this book. It grants a sense of peace and understanding where fear and uncertainty normally abound. This book encouraged my family to call hospice for my grandfather, long suffering from Alzheimer’s, and they have been a godsend for my family. Many believe that hospice is there to help care for the dying during their last few weeks of life, however this is only one component of what hospice actually does. Hospice care is not about “letting nature take its course” or to prolong life (that’s the goal of medicine), but to focus on patients’ priorities as their life and capabilities begin to narrow. Gawande argues that the current health culture is “biased towards action and built around the long tail of clinical outcomes.”
Our goal for ourselves and for our loved ones should be to obtain a sense of peace, and develop a medical path that enables our lives to be made complete. To do this we each must come to terms with what matters most, and confirm that our intentions will be followed. We owe this to ourselves and to our loved ones, even at the price of our own discomfort.
I wish I had known more when my grandfather first developed dementia, because he lost time and so much ability he could have preserved with hospice. My mom and grandma painstakingly took care of him because they did not know they were entitled to hospice care; in fact, his doctor told my family that they were ineligible, only for them to find out from the hospital that they were eligible. All this only AFTER I continued to push for hospice care. His story now has a great chance of at least have a good ending, one free from pain and suffering, but it shouldn’t have taken this long to get here.
If you read this far, I hope you begin to think about what a “good ending” means for you and for those you are responsible for. Pushing it off until later is a luxury few can afford. I know this from personal experience.