Facing Death: Holding On and Letting Go

Every death is different. A hospice caregiver shares insights about just how different people’s responses to death can be.

Every death is different; every terminal illness transforms the bodies and hearts of all involved in unique and unfathomable ways. Some people quickly give up the ghost, so to speak, loosening their grip on life nearly effortlessly, while the tenacity of others can boggle the mind. Sometimes there is great suffering, sometimes the passing is more easeful. Correspondingly, the ones being left behind sometimes cling to denial, resisting the painful reality of devastating loss, and some give themselves over to their grief with open surrender. Most people move through a dynamic process of both denial and acceptance in their own time. As a volunteer caregiver at the Zen Hospice Project’s Guest House in San Francisco, California, I witness many ways to die and many responses to death, many ways of holding on and letting go.

“Gene’s” suffering at the end of his life was so great it was hard to absorb its magnitude. He was shockingly skeletal, brutally bruised and utterly incapacitated by the time he arrived at the Guest House, unable to swallow either food or fluids. It was inconceivable that anyone who looked as he did could possibly still be alive, let alone awake and aware. I had only seen this level of prolonged catastrophic illness once before, otherwise the only references I had for his horrific appearance were images of victims of the Holocaust or of extreme famine. After resolutely remaining independent for far longer than many people with terminal illness can manage, Gene had finally come to the beauty and calm of the Guest House to be cared for in his final days of life.

I began my short time with Gene just sitting quietly at his bedside while he seemed to be somewhat unconscious or dozing. As I sat alone with him, I noticed my internal reactions to the graphic and terrible evidence of suffering before me. In the extensive volunteer training at Zen Hospice, we’re taught the precept of welcoming everything and pushing away nothing. This practice of mindfully embracing all that is happening in the present moment inside and outside of ourselves, rejecting no aspect of our experience, allows us to more fully meet with open heart and mind the vast range of the realities of life and death.  

Observing Gene, I noticed strong feelings of alarm in my body, my mind telling me I must take immediate action for this man. And yet I had a deeper knowing that there was nothing I could do. There was nothing wrong, there was nothing to fix. This was just Gene’s natural dying process and he was well cared for. All I could do was be a caring presence for him. Yet it was painful to behold; my heart ached for him. I gently held my feelings of anguish, anxiety and compassion as I sat, attentive to my breath and his, relaxing into the reality of that moment together.

Sitting there, I noticed that at any little sound he responded with a noticeable change in facial expression. His eyes were half-open and unfocused and his eyebrows and mouth were remarkably pliable and expressive. I began to wonder if perhaps he was more aware than his dire appearance suggested. Taking a cue from the framed photographs of several cats on his bedside table, I began speaking to Gene about the cats in the photos. At the first mention of the word “cat” his emaciated face came alive. I slowly and quietly told him of the various cats I’ve had in my life, and as I described their peculiar cat personalities, he clearly responded to each anecdote with eloquent arching eyebrows and grimaces of empathy. He seemed completely clear and alert while far too debilitated to speak. Seeing how he was astonishingly aware, given the physical state he was in, was incredible to contemplate. He appeared fully sentient yet inhabiting a body that seemed as though it should have died long ago. I marveled at this as tears filled my eyes. And despite the radical difference between our two current experiences, we were together in the moment and bonding over our love of cats.

We three wept together as Leo kept stroking Gene’s heartbreakingly gaunt face. I could feel the many decades of their love and shared stories of brotherhood, and the tortuous years of his illness, palpable between them. I was aware of witnessing the end of this long and richly loving relationship, in awe of the openness and authenticity of their hearts. Although I had only known them both for a few brief hours, we shared such deep, raw and tender moments together, connected through love and grief (I carry my own as well), directly embracing each other in life and death, holding on and letting go. 

Gene’s tenacity held him to life for three more days. 

Learn more about how Zen Hospice Project is helping to change the experience of dying.