How do we identify pain? What denominators do we use to quantify pain? Does our need to be free from suffering play a role in this denominator and how do we separate these fine lines?
These are constant questions for me in working with the dying. I have strong belief systems about how I want to die and what I want and don’t want in the process. Do these “don’ts” interfere with my ability to clearly hear my clients and act as a non-judgmental witness?
As an advocate of alternative medicine, I am a believer in expression rather than repression. When I have pain I want to feel it. I want to be in relationship with my pain so I know how to work with it and move with it without contributing to the physical and or emotional stressors that might increase the level of discomfort experienced.
Louise was in the final stages of her life when I was asked to see her 3 times a week. That was in October. She died in February.
Louise had no control over her body. She could raise her right arm and turn her head slightly to the right. Sometimes in a session she kept her head in constant movement. Louise was grateful, always said thank you for coming and always greeted me with a smile. I consider her level of trust a precious treasure and often related that to her which seemed to please her.
She was moved from the skilled nursing facility to the hospice in December. Once in the hospice she became quite agitated and began calling out for help and moaning loudly. Of course, how to relieve Louise’s pain was top priority and her discomfort was partly assessed through the degree of vocal expression.
Pain medication would quiet the moaning, however sometimes when I went to see her after being told her comfort had been restored I would find her whispering “help” in a voice that could not be heard. The need to call out was still present. The team was relieved. Louise was quietly resting.
There were also times when Louise would call out that she hurt all over and pain medication subsequently brought her needed relief. Other times she would decline medication and a volunteer holding her hand was the perfect support.
The agitation and vocalizing lasted for about a month. Arnica and Rescue Remedy were introduced as adjuncts to her pain medication to see if that would help the anxiety beyond the pain.
I am reminded of two visits when Louise was yelling out and I told her the nurse would be in to give her medication. ”I don’t want any medication” she said.
Through many of our sessions Louise called out for help and moaned loudly, declining medication and stating she was not in pain. Maybe the moaning was pleasure. Sometimes I’d ask if the touch felt good and she’d say yes. Maybe the moaning was bliss. Sometimes she called out “oh” the entire session.
Once, in the last couple of weeks, I arrived and the volunteer with her said Louise was moaning loudly but she did not want any medication.
This is a human being that was unable to move her body for many years. The only movement she could produce was through her voice. Should her comfort be assessed by the silencing of her voice or by the ability to use her voice?
When are sounds pain and when are they a coping strategy for releasing pain? How fine the line.
“When I die allow my voice to fill the temple and the movement of my limbs to be as wind through the trees. Do not silence or still this passion that has been so responsible. Allow me to participate in this dance with spirit, loose and wild and free. Allow me my process.”
Irene smith
I would love to hear your feed back on this topic.
Blessings,
Irene Smith
www.everflowing.org
Comments
Very interesting Irene. Your story illustrates the complexities of caring for the dying. To truly serve others it is important for us to sit with the patient and listen from the deepest parts of our being. To truly listen and comprehend may take many visits to accomplish. Sometimes what we see on the surface leads us to choose the obvious conclusion when in fact that conclusion was incorrect.
As we spend more time with patients like Lousie we get more profound insights about their real needs as you did. The unfortunate result of premature conclusions may result in them becoming unnecessarily sedated by medications and then be unable to communicate their real desires.
The interdisciplinary hospice team can help alleviate the uncertainties associated with making such assessments but I suspect that what you experienced and deduced was the result of you making frequent visits over that time period and developing the relationship that allowed you to really get to know Louise.
Perhaps all Louise really wanted was to get the attention of some compassionate being like you to accompany her on her journey with the loving presence of your touch at the bedside.
Your story illustrates that the human intervention of love can alleviate anxiety and pain with your presence. Thanks for sharing your thoughts.
Greg