She was overwhelmed with grief when she walked into the room and saw her mother silently and peacefully dead in the hospital bed. Her death was expected, but as always, no-one is ever quite ready to let go. She started to wail loudly and speak directly to her deceased mother about the pain she was inflicting by dying.
She was compelled to hold her prayer beads and started to dance around the room. Little footsteps, singing and chanting, crying and wailing in a pattern that looked like she was in a trance. Occasionally, she would lay across her deceased mother with her arms outstretched. I was scared that she was losing control and worried about what she might do next. My frame of reference was that of an Irish Catholic and I had no experience of grieving this way. As the nurse caring for her mother that day, I felt a strong urge to take control of the situation.
Is there a policy about this? How does the hospital deal with distraught families? Guidance was nowhere to be found and I felt my anxiety rise. Taking a deep breath, I realized, my way is not the only way, and my role was to keep people safe and support them in their grief. I approached her gently, touched her lightly on the back, apologized for interrupting her and asked “Are you OK? Is there anything that you need from me?” She stopped the dance, composed herself and answered “No, I’m fine.” She then returned to her trance, dance and chant. Reassured that she was not losing control, I relaxed and supported her. I observed and learned about my own lack of knowledge about different cultures and their rituals at the time of death.
He was young and tough and so were his two brothers. They were a team. When AIDS came knocking on the door, it messed up their tough guy gang. They came from a dangerous family and went into the family business; drug dealing. There was a lot of money to be made. They freely sampled their own product and lived life in the fast lane. They shared needles and introduced each other to HIV, Hepatitis and other communicable diseases. They were too tough to be bothered with illness. I could feel the tension in the air. It cut like a knife. I imagined there was a lot of violence in this family. I felt scared and sad. I wished their lives could have been better and taken a different path. No amount of therapy would heal this family. As their younger brother died, the two older brothers became incensed; choking back the tears they were too tough to show. Stress rose, eyes darted and fists began to fly. People scattered, others watched incredulously. I stood shaking like jello, in great fear of the rage I saw before me. Nurses ran to phones, security guards came running and the fight was ended. I had never seen people react with violence this way, an understandable coping style given their history, a release needed in a moment of great distress. Both brothers blamed each other for their precious little brothers death each of them holding the other responsible for introducing him to drugs and the needle. I observe and learn about understanding coping styles and having compassion even when scared and threatened.
All I heard was singing, joyful, praising God. It was beautiful. I wondered what the singing was all about and entered the patient’s room. They stood in a circle holding hands and swaying to the joyful music. Sometimes they would clap and raise their hands to the ceiling. In the bed lay a gentle elderly lady dying from heart disease and gasping for air. Joy, in my mind, did not correlate with the gravity of her condition and how she seemed to be suffering in the dying process. I whispered quietly to one of the ladies singing. “Why are you singing?” She answered “We are encouraging our beloved sister to go to God. We are celebrating that she will soon be with Him. There is no better event to celebrate. We have been preparing for this our whole life.” I have never heard this before, my frame of reference being Irish Catholic. My twenty two year old mind had not yet had the opportunity to see it this way. I observe and learn that death can be joyful and belief in a higher power is a beautiful thing and I want to learn more.
She was very funny and abusive, demanding her methadone every 5 minutes until the clock strikes the magic hour, 10am. She loved her nurses but would steal their wallets in a heartbeat and would play nurses off each other in an effort to get an early or extra dose of medication. Once, she succeeded. She celebrated that day. We congratulated her. She was a heroin addict, always looking for money or means for the next fix. Once methadone was administered we would watch her in her room, sleeping while standing; her head making a slow decent towards the floor. She never fell but we would take bets that she would. One of us would be compelled to go and make her sit or lie down. She would tell us stories about her drug dealing days. The first 2 bags were for her and the rest she would sell. Sometimes she sold herself for her next fix and in her mind managed to normalize it all. She was small, barely five feet and tough as nails. We watched her over the years on a never ending cycle of sickness, decline in health, hospital admissions and loss of independence. She had progressive multifocal leukoencephalopathy, cheese brain as we called it. She managed it valiantly, still bombarding us with the customary abuse only now it was unintelligible, she walked with a limp and had had a stroke. When we lost her, we felt desperate. Is the torture of AIDS ever going to go away? Although she was a challenge to take care of, she was part of our family and we loved her feistiness. Her family had long since left her and in arranging her funeral, we struggled with being true to her culture and her wishes. My frame of reference again, was Irish Catholic, way off track from hers. I observed and learned about attachment to patients, paying attention to knowing and honoring personal wishes and the importance of unconditional regard for all people.
Learning about and embracing different cultures, their beliefs and practices at the time of death is a mission embraced by people in the service of the dying. Internally, we manage our fear, open our hearts and bear witness to the beauty of diversity. What stories do you have about becoming aware of cultural differences, rituals and your own comfort or discomfort at the time of death?
Niamh van Meines is a nurse practitioner who blogs at Hospice Navigator.
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