I have considered often through my hospice career why I was doing this work. I remember at first believing very deeply in its mission of providing comfort and support to those who were dying. I liked that the focus included families.
The eternity of the years of my mother’s death, with pain and overwhelming depression left me very alone. There was a very heavy feeling in each days unfolding. I know her cries of anger and helplessness about excruciating pain deeply frightened me and led me to feel very little and confused about why she would hope to die and consequently leave me. Seeing that hospice aggressively fought pain and attended to children’s understanding was extraordinary for me. By being part of this I could somehow keep others from experiencing what happened to us.
I quickly realized there is a unique gift in participating in hospice work. The taboo and denial of death in our communities is pervasive. The messages are
clearly that youth, health and productive functioning are valued. I discovered that the dying have much to teach and that hospice workers have glimpses into a private part of life that most don’t have. I was offered a way to consider my own values for living and dying. When each day is filled with death, you decipher what you would want to have happen and not happen in your own dying. You define what dignity means to you.
It is work that is incredibly draining emotionally. You go to edges of feelings that you didn’t know existed. You test your capacity for survival in the face of tragedy. Frankly, this place was one I knew from my childhood. The tears made sense and I learned their expression was healing. I believe tears honor those that have died. While I felt in the early years of hospice work that I was making sense of my mother’s experience, I was also unlearning some limits imposed by my family – stoicism, silence and protection by exclusion. I found out that families can grow closer when they talk about death. They can laugh, cry and struggle together instead of apart. It was cleansing to be included. I discovered that my familiarity with the fear involved somehow made it safer for others.
I was valued for being with hospice and good at the work. It was meaningful and privileged.
When my father and step mother were dying I came to believe my hospice work was about making sure their experience would be different than my mother’s. It was. I wanted the same for my aunt, uncle and best friend. I felt I failed.
With AIDS, waves of deaths of my contemporaries happened without time between to catch my breath. These were vicious deaths. My being an AIDS healthcare provider stigmatized me within my agency. I fought for service support for my clients. I led an agency kicking and screaming at times towards their responsibility. I identified with my mother in new ways – advocacy, politics, assisting the disenfranchised as a social worker, pioneering new designs of care, innovative grants, developing state standards of care and practice collaborations. However, my experience again was one of isolation. The AIDS community, while needing and using hospice services, hated hospice workers for what they represented as did the physicians who fiercely joined in the battle to save lives. It often was my job to name the reality of dying for those screaming a soul protest. At times my heart hurt so deeply that numbness would happen. The tears would get backed up or not come. After many years building trust I joined the crest of hopefulness as new drugs extended life. People were living with HIV. We spoke of chronic illness, immune reconstitution, and even cure.
Then it became clear that the meds made cancer chemotherapy look tame. I pushed my hospice into understanding palliative care had a greater scope than they had chosen. My colleagues and friends in planning groups and state commissions were still dying….slowly.
I think my heart broke too many times. I realized that my soul was very, very tired. It became almost impossible to keep on saying goodbye. My own will to live weakened. With little energy left I struggled to make sense of my own suffering as well as that of those I loved. My work became a search for meaning, a wrestling with my sense of spirituality and a concern about whether I had a death wish or some deep dark need for punishment. It was clearly time to stop and I did.
I reached for a sanctuary – a place where I could rest and remember to breathe. It was the rhythm of the ocean. It was a community of friends who were open to tears and woundedness yet held hope and positive energy.
Then I took a very wrong turn and restarted hospice work. I thought it was a part time job for money and benefits this time. My numbness was gone, but my heart was not healed. A frightened 12 year old girl mirrored my early experience as her mother died in agonizing pain. I helped her by saying what had not been said to me and knew she realized she was not alone. Then I must have shattered. A month later terror arrived.
I don’t know yet what I am learning from this disintegration. It is a struggle sometimes to make it through an hour. The tears come in waves. Sometimes I can name the reason for sadness. Most times not.