End of Life Caring Literacy Protects Us All

End of Life Caring Literacy Protects Us All

Caregivers encompass uncountable numbers of an often poorly educated workforce who take care of our loved ones when we cannot. These caregivers live in our communities. They become a part of our homes and families. Increasing caring literacy for these medical and non-medical caring professionals is a way to give back. It provides a career path that not only stabilizes caregivers in the fundamental science and stages of dying, but it may increase spiritual awareness, loving kindness to self and other, and overall sense of well being as well.
 
Increasing end of life literacy may positively influence the patient’s experience of care, decreasing pain and suffering in our communities. It may expand our understanding of “do no harm”.  In our time of deepest vulnerability, frailty, and dependence, caring literacy protects all of us.
 
Validating Roles of Caregivers

By validating the work of caring professionals as Sacred Passage Guides, we confirm the worth and value of caregivers who dive into the turbulent, complex waters surrounding the stages of life, illness and death for all of us. When we bring human caring sciences to our home caregivers—the foreign laborers, single mothers, family members, volunteers who keep vigil at the bedside of those who are dying, those who midwife us to the other side—we invest in our own good death and we give legitimacy - an honored role to non-medical caring professionals. We validate and honor one of the oldest caring professions on earth.
 
Let’s talk about it: Conversational Confidence 

Though America's view of Death is changing rapidly, talking about death is one of our culture’s top taboos.  End of life caring literacy program invites us to explore our hopes and fears about dying in advance of the onset of death. Exploring our relationship to death may increase self-knowledge. It may break down barriers between ourselves and others when we most need comfort, communion, trust and safety. When we explore our feelings and thoughts about death, we learn more about our lives now. We come in direct contact with our spiritual beliefs, our life’s purpose, our unfinished business, what our bodies need or want, how we influence and are influenced by our environment and our relationships. We build a foundation of confidence upon which we may then talk about life and death with others. By becoming confident in our ability to talk about death we may have more influence on how we live and how we die.  We might reduce harsh, costly interventions that threaten what we value most. We may reduce emotional and financial stress of our families, health care systems and nation. We might place our awareness and attention on our loved ones or on our spiritual life vs. living at any cost. We may be more available to life’s blessings, mysteries, miracles and unexplainable events.

Rural America: Original Death Cafe' Culture

During mealtime, the only conversations from women in my family were on illness and death. No matter what else might have been going on in the world, Kennedy’s assassination, Vietnam, presidential elections, sports events ( discussed by men)— women only talked about was who was sick and who was dead.
 
I’ll never forget what my Uncle said about "death talk". He said, “Tarron, here's what it’s like: My wife and I go down to the café to have a meal.  As soon as we walk in the door,  she goes off to say hello to her women friends and before I can sit down, every one of them is rattling off the hospital report”.

If you sit through these discussions long enough, you will get the complete medical history on every family and what the doctor said about their health. You could hear my relatives describe the color that someone’s skin turned before getting to the hospital and what street the ambulance took a wrong turn on. You could hear in depth discussions of the food someone ate and whose wife cooked it before her husband had a heart attack. You could gain insight into all the things people do to bring on the hard luck of sickness and what was expected to become of them.

When someone died, “Lord, Lord…” were the first words beginning every sentence, and then, “Poor old so and so”. My mother, her five sisters and both my grandmothers talked on and on about who was at the funeral home and why their relative didn’t show up fast enough to see him before he was laid in the ground. They would dress up any day of the week and go down to the funeral home with casseroles and dishes of homemade beans and ham and pecan pies and cornbread in hand to honor the dead during an open casket showing no matter who had died.
 
They took their lace hankies-- prepared to grieve and mourn and listen to the same sad hymns sung by choir members of differing churches. Dying was a whole town affair, and talking about it was sewn into this Southern rural culture like the patches on a quilt.  You not only talked about what happened, but you showed up to see the body all coiffed and life-like in the casket. Then you went to the cemetery for the burial.
 
After the last shovel of dirt was tossed on the grave, friends, family and clergy moved from cemetery to home. There they opened plates of pecan pies, pound cakes, sliced ham, fried chicken, creamed corn and three bean casseroles. They poured sweet tea into glasses of ice and served the grieving family.
 
At this after-death "house warming", you learned more about a person’s life than they would ever want told. But each story, told with great affection, gave the family the sense that their loved one had been known, loved and was already missed and remembered.

And this, I believe, is the original Death Cafe'!

Heart Story: Transfering Wisdom at End of Life

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What My Grandmother Gave Me

Mary Eva Estes, 1900-1986

In the weeks before my Grandmother died, she lay in bed mostly paralyzed from a stroke. Less than a month before, she still raked the leaves and fed the chickens. This last time I saw her, she was dozing between worlds, at ease with the restful peace of this time. I reached out to touch her and she opened her eyes wide as pumpkins. She took my hand in both of hers, and...

...with clear speech, undefiled by the stroke, she began to say my name out loud three times.  She said, “Tarron Janiece Estes….Tarron Janiece Estes…Tarron Janiece Estes”. The warm pocket of her hand was still holding mine. Like the memory of a common language, I said back to her, “Mary Eva Estes…Mary Eva Estes…Mary Eva Estes”.

Within that ancient, timeless ancestral portal, I felt the meaning and wisdom of her whole life shoot like a star through my heart giving me back everything we ever shared, learned, and loved together. I knew in that moment our sacred purpose as souls, larger than grandmother and granddaughter. She imparted a lesson in living and dying. She gave me my purpose in serving other at end of life.
Tarron Estes, Founder Conscious Dying Institute

Practice For Death

The “Practice for Death" is sometimes called a meditation or sometimes a poem. It came to me in a dream. In the dream Ginny, one of my teachers discovered that cancer had returned to her for the third time. Her children and husband were wildly, furiously, desperately trying to soothe her and help her. They were all maddened and struggling hard to make the truth of her illness go away. I was in the room, in dreamtime, but invisible, watching.

Ginny tried desperately to get them to stop. When nothing would make them leave her in peace, she called to me to take her away. So in the dream we moved out of her house and floated into a beautiful green garden. Ginny lifted her arms and an emerald green silk robe came down from the sky. She grabbed the tails of it and wrapped it around her.

She looked at me with a deep thorough peace and said “Thank YOU”. She stood still with her arms crossed over her chest and began to say all the words in the “Practice for Death” - one line after the other. When she was finished, she looked at me again and said, “Tarron, this practice is yours. IT IS YOUR WORK.” And with that she kissed my cheek and disappeared.

I woke, sitting straight up in bed with a feeling of gratitude and dread. I wrote the words down without lifting my pen and went back to sleep. The next morning I called Ginny to tell her my dream. When I told her, she asked me, “What kind of dream is this?” And I said, “Well, it’s both a teaching dream as well as a foretelling dream.” Then she told me that indeed the cancer had returned and her family was having a much harder time with the information than herself. 

She had been my dream teacher for many years. We were both silent for a few moments realizing that the foretelling was both about my work and her illness, and that the teaching was for both of us.

Now I use the “Practice for Death” as a teaching tool. We learn through the practice to support each other, surrendering completely in the way we would most like to die. Each phrase in this practice is complete in itself and each line resonates differently and stronger for each of us. We select one or two phrases and these are said into the left ear of the person who is practicing their death. 

People report that the phrases are relieving and heart opening. Some say they have never known until this practice that the right words could be so healing. 

In Sanskrit, these phrases, these short meaningful kernels of truth, are called “Pith” sayings. When we use one of the lines in the practice, we are on our own restorative inner journey. We come to know each phrase and it’s importance for healing, surrender, rest and release for ourselves and others.

During the later phases of active dying, the hearing is the last sense to go. It is important to remember that what we say during this time is of the highest importance and can be healing and elevating to the spirit of the person departing as well as family. Using the “Practice for Death”, or specific phrases, can be one of the most meaningful caring modalities we can offer nearing death and dying.

- Tarron Estes