“Peace is not the absence of the storm. Peace is not some tranquil, idyllic place. And peace does not keep winter at bay. But peace names the way we struggle with that which lies before us.“
Dancing with Elephants, Jarem Sawatsky, Red Canoe Press, 2017
A hospice nurse recently reminded me that each person will have a unique way of dying, and that dying is a sacred time for them. I believe that those tending to the dying person are presented with the honor of applying care practices that support this sacred process.
Since I work with people who have Alzheimer’s, Parkinson’s or vascular dementia, I have already witnessed the brain failing before the body is fully ready. As I have come to say, this leaves us with heart centered work. So the sacred piece of the puzzle at end of life has become an important part of my learning and sharing.
Our culture currently does not include helpful traditions or practices for the dying process; leaving many in a state of confusion about it. Patient rights laws are evolving to support the rights of individuals to make end of life decisions, with goals of promoting dignity. However, efforts to include Medicare and other health insurance coverage for much needed counseling on end of life needs have failed politically. Death continues to be difficult to talk about and the lack of dialogue leaves most in the dark. This deeply human experience awaits a much needed societal awakening. Hopefully we will move forward with cultural practices that are supportive, and even enlightening.
In the years I have worked with frail elders with dementia, I have been a witness to many different ways people experience dying. I believe that letting go is an important part of this process, but letting go does not mean giving up. During the dying process, ironically there is still a lot of living to do, right up to our last breath. “Process” may seem like a cold word to describe dying, however considering the many different changes the body goes through, it is truly a remarkable process as the internal organs slowly adapt to less nutrition, less water, less movement. As the body completes and meets its final challenge, shutting down and letting go.
I have seen curious behavior like “climbing” upward, throwing off clothing and bedding, talking to loved ones who have already died, talking of buying a new car for a trip or preparing to move to a new home, or returning to one’s childhood home. “Home” often comes up in many forms.
Sometimes end of life can be more of a struggle than we would like to see, as much as we try to bring ease and comfort to the experience. The majority of Americans envision death will come quickly and peacefully. In truth, about two-thirds of us die in a hospital or nursing home. And with the chronic conditions the majority of elders experience, it often takes time.
End of life agitation may manifest itself at some point — a sign that there is an unmet need somewhere. It’s our job to pause, without judgment and then try to detect what that need is — for example physical pain. Being very observant becomes necessary — looking closely for signs of physical pain like grimacing, frowning, moaning, restless fidgeting or crying out. Repositioning gently can relieve pain and ease breathing, as can gentle massage of hands or feet with aromatherapy lotions that fill the room with comforting scents. Keeping all sizes and shapes of pillows on hand really helps.
Or it may be emotional or spiritual pain that comes perhaps from a place of powerlessness over death. Giving verbal reassurance with emotionally supportive statements can help to let go. Spiritual support can come through singing or playing favorite songs, or reading from a loved one’s treasured poems or spiritual texts. There are so many ways to meet these individual needs.
Hospice care brings a welcome stability to dementia care patients and their caregivers during what can at first appear to be scary and uncertain. In the past ten years there has been a significant increase in hospice services for people with advanced dementia. In 2019, nationally we saw continued growth of Medicare hospice patients with a principal diagnosis of Alzheimer’s, dementia, or Parkinson’s, which represented more than four times the number of patients who had cancer.
Many hospice nurses and physicians in Sonoma County have mentored, coached and enlightened me over the years and I write this with deep gratitude to each of them.
As always I welcome your feedback and questions.
References
CDC:
Teepa Snow: End of Life Care and Letting Go
Dying in America, Institute of Medicine, National Academies 2015
Life Lessons, Elizabeth Kubler Ross MD, David Kessler, Scriber 2000.
Hospice: https://www.luminahospice.org/understanding-the-dying-process-2/
National Hospice and Palliative Care Organization Facts and Figures: https://www.nhpco.org/nhpcos-new-facts-and-figures-report-shows-changes-in-hospice-patient-diagnoses/