"So what do you do?," a question most of us are asked when first meeting someone. Recently, when I told someone I want to change how our culture discusses and plans for death, he responded, "I bet there's a story for that," here's the story.
In 1979, when I was two, my mother was mortally wounded in a horseback riding accident at a family gathering. Preparing to be rushed to the hospital, her parting words to my grandmother were to, "Take care of Justin."
Like many families, my parents were not prepared for the sudden death of my mother. There were no advanced directives, discussions about what to do "just in case," or life insurance. In a nutshell my mother's death shocked my family into a sort of numbness that some of them never recovered from.
Since then, my mother's death she is rarely discussed, except the occasional comment about her intelligence or reference to a picture. To this day, my dad has voluntarily mentioned her once, it turns out I inherited her disdain for ham. My grandmother would occasionally talk about her, but it almost always resulted in tears, which I interpreted that this was a topic best to avoid. I have no memory of her and the pictures I have insert her in my life as a placeholder, more like a stranger.
My grandmother held the commandment to watch over me as I grew up. We took trips together, like the photo at Mount Rushmore above, and she always came to school events and for holidays. I stayed close to her through out her life, particularly after the death of my grandfather and uncle, leaving me her only 'blood.'
23 years after my mother's death, shortly after grandma's 80th birthday, she stopped me as I was leaving from a visit to tell me where the check book was, the deed to the house, that she had a DNR, and I was her power of attorney, just in case at some point she couldn't make decisions for herself. I filed this information away, thinking it might come in handy one day, but only two days later I was at the hospital making medical decisions for her. For the next two weeks, I drove 60 miles round trip to the hospital for visits and consults with her doctor.
Over that time she had her gallbladder removed and slowly her system stabilized. I stumbled through the process, following the hospital, she was moved to the assisted living home next door, the intention was she would return home after she recuperated.
Her rehab stint was very confusing, when I visited she was almost normal (slightly fatigued and confused), but the nurses said she was often combative and would cry out at night. Three weeks into her rehab, I visited on a Friday night, she wouldn't eat her dinner and cried out for her long deceased father. She died the following Friday, one day before what would have been my mother's 53rd birthday.
If you've never been a health surrogate, it's stressful to begin with, but when you've only had one conversation about the responsibility and there's no plan it is much worse. My life has been punctuated by death, grieving will happen regardless of the circumstances, but being unprepared complicates the situation.
From the stories I hear as a hospice volunteer and from hosting Death Cafes, the avoidance of end-of-life discussions and the departed experienced in my family seems to be a fairly common occurrence, but this shirking extends to healthcare workers as well. Consider, my grandmother was talking to dead ancestors a week before her own death, an experience described by hospice social workers as "Living in the margins." I now believe that she was in beginning phases of dying, yet, none of my grandmother's caregivers gave any indication she might be or suggested hospice care.
My hope is that when I die, whether ahead of my time or as an octogenarian, that my loved ones are prepared and there is a system to support the process. The current worldwide attention to death and dying gives me hope that the taboo regarding death might be shifting. To this end I am spearheading an effort in Louisville, KY, to engage multiple stakeholders in conversations about end-of-life conversations and creating systems to support people through the dying process. The project is being guided by the question, "What would make Louisville the model city to live fully into death." If you would like to learn more or collaborate please contact me through email, Jamagn01@gmail.com, or through the Global Human Project, "Living Fully Initiative."