From every loss in Amanda Carr’s life has come a deeper understanding of the dying experience and a greater appreciation for life.
By Amanda L. Carr, End Well eCaregiver
Death and grief are often viewed in a negative light. We cope with them from a reactionary place, and they are subjects that we prefer to deflect, defer, and avoid whenever possible. Death and grief are profound teachers, however; they are inspirations for living. Their boundaries help us define and re-define our humanity and love. My life has been an ongoing lesson in how to view them in this way.
When I was five, my Grandfather Bill died suddenly of a heart attack. From this loss, I learned that death comes swiftly; it leaves questions unanswered and tears. I learned that death was traumatic.
Twenty years later, Grammy Fran refused to live in a reality without her legs, which doctors had told her required amputation. Living as she had always done — in charge, in control, with spirit and fight — she chose her ending. She made her decision and stopped taking Coumadin. A massive stroke took her swiftly from this earth. I learned that death can be a choice; it can be controlled; and it can be full of surprises — not all of them bad.
My Grampy Ken spent twelve agonizing years slowly declining from Lewy body dementia, and I learned how cruel death could be. The blow was not swift, but a protracted assault on the very essence of the man we loved so dearly. I learned about the strain of caregiving as I watched my mother turn pale in her worry, and how disease can make a hollow shell of a person. I learned that death, when it finally comes, can be mercy and bring peace.
Three years ago my 87-year-old Gram, Virginia, suffered a fall. After watching her struggle through surgery and attempts at rehabilitation, I brought her home. We had eight months on hospice, and we spent that time creating amazing memories. I learned that caregiving is one of the hardest things we can be called to do and one of the most fulfilling. I learned that death was laughter, love, family, community and the natural conclusion to an amazing life. I learned that death could be beautiful, unifying, difficult, and yet accepted and embraced.
My grandparents did something unintentionally empowering for me. Together, those four amazing people offered me deep insights and a personal understanding of the most common ways that people die. Learning how to let them go took 33 years and, through the process, my perceptions of death have changed profoundly.
When my love, Bill, suffered the death of his son, I watched his grief swallow him whole. I watched him die spiritually, though his body lived on. I spent over ten years tracing my fingers along the edge of Bill’s agony and grief, learning how to grieve myself. Bill was dying for a very long time. I would come to think he was gone, then find out we had been granted the reprieve of more time. I came to the understanding that no matter how much time is granted, there is never enough. I learned that heartbeats can continue where life has ceased. I learned that letting go is a skill, a key component of love, and — sometimes — a superpower.
In my nursing career, I have learned that it is possible to do extraordinary things in order to save lives and extend the function of the human body. I have also learned that there are things we cannot fix, time we cannot buy, and lives that cannot be saved. I have learned that capacity for intervention is not a mandate: just because we can, it does not mean we should.
It has been a long journey, answering my calling and learning about the work to be done. My road to this place has been part study guide, part practicum, and entirely in preparation for what I feel in my bones I was meant to do: help people re-examine their relationship and perspective on life, death and grief.
Amanda Carr is a Registered Nurse and trained death doula. Her collection of careers might be best described as ‘eclectic.’ She has been a musician, computer programmer, world traveler, and, for the last 13 years, an RN. Her career in hospitals and emergency rooms evolved over time into her work in hospice care. Amanda’s personal experiences with friends, family, and patients helped shape her views on how we treat people in their last days. With her company, Changing The Face Of Dying, she is working to transform how we think about life — and death — through education, care and advocacy.