7 ways to Support End of life Mysteries: Practices for End of Life Caregivers

Acknowledging Mysteries and Validating Unexplainable Events at End of Life.   Most caregivers attending at end of life bear witness to stories of mysterious and unexplainable events that happen around the dying process.

Recently I heard this story from a caregiver: “I was with an elderly nursing home resident when she died. She hadn’t had her eyes open or spoke in about a week and all of a sudden she opened her eyes, smiled, and said in a very clear excited voice, “Oh, Winston. You’re here. You’re okay.  Yes, Yes, I’m coming Winston.” And then she turned to me and said,  “Tell my family that Winston and Mom are okay.”

The caregiver said that she then closed her eyes and died.  The caregiver admitted her concern about telling this story to the family and nursing home staff, thinking they would judge the elder as being deluded at the moment of death. But she followed her intuition and told the story to the elder’s family. In doing this the caregiver discovered that Winston was the elder’s younger brother who died in a fire in the arms of her mother over 30 years ago. The family told the caregiver how comforted they were to know the elder had seen her deceased mother and brother before she died. That she had always suffered because she did not get to tell them goodbye. This gave them all a feeling of peace and relief and strengthened the caregiver’s trust in her intuition, even though at the time of the event, she did not know the meaning of the elder’s last words

 Stories of meeting or seeing deceased loved ones is commonplace at End of Life. People in all roles, genders, social classes, cultures, religions and ages report experiences they cannot explain around the dying time. Most of these reports have a feeling of awe and mystery. They deserve our respect. They are stories that deserve to be shared and acknowledged.

7 Ways to Support the Unexplainable events surrounding end of life: What we can do?

1. Know that your energy and presence is always felt and your voice is heard. Your attitude and emotional state is always being communicated. Be respectful with your words and actions at all times, regardless of the person’s present state of consciousness.
2. Always assume that levels of awareness exist in the dying person. Assume that they can hear, can feel,can see in ways we may not be accustomed to.
3. Don’t judge the person or the unexplainable event.
4. Don’t assign blame to medication or assume the “person was out of their mind.” Though medication can certainly heighten access to “non-rational” phenomenon, it does not necessarily produce the story-line of the mystery.
5. Accept that the dying person may access non-physical reality that we are not able to, a reality containing necessary information for their dying process.
6. If you want to, share the story in the spirit of learning. Don’t pretend to know or explain what happened. Pass it on with an open heart and mind.
7. Be a compassionate listener. Validate their vision, and allow the story to unfold. If agitation is present, be a calming force. Trust their wisdom. You don’t have to fix them or resolve the story.

4 Ways to Increase Your Healing Presence and Spiritual Path

The Path of the Healer “You may think of yourself as a doctor, nurse, health professional- and yet in many traditional societies, you would be called a medicine person, a shaman. You would be called a shaman because you have the privilege to steward the Mysteries of illness and death which is an initiation to coming home again to a deeper sense of self and well-being.” Angeles Arrien, PhD

Increasing our deep sense self and well being allows us to offer our authentic caring healing presence to others during illness and death. This may sound simple, but really, how do we do this?

How do we be with someone who is experiencing grief, isolation, fear, anger, or pain during their journey through death, illness loss? How do we let go of fixing, helping, changing, and "doing" something, anything, when we don't know what to do?

Here are 4 ways to increase your healing presence with others:

1. Focus on yourself first and Ask: What am I feeling? Discover what you yourself are feeling in the moment and find a way to be with your feelings first. Perhaps you are scared because you don't know what to say or do. This is normal. Rest for a moment with your own sense of uncertainty. Find the place inside where even with this uncertainty or others feelings, your intent is to be with your own feelings and support and be there for the other.
2. Practice "Self-Care Breathing":  Inhale deeply into your abdomen as if you are creating"space on the in-breath".  On the exhale send out "loving kindness, healing, peace" through your heart. 
3. Practice "Matching the Breath" to ease pain or discomfort: Notice where your friend's breath resides and it's rhythm. Is it high up in the chest or throat? Is it in the diaphragm or abdomen? Is it choppy, slow, fast, labored?  Once you have discovered the location and pace of their breath begin to match it and breath with their pace. Do this for a bit and notice if they begin to relax, perhaps slowing down your breath or deepening your breath lower in your body to increase relaxation.
4. Practice "Speaking Silently Through the Heart": Listen to the sounds, story of this person and observe what is happening with your whole being. Instead of trying to say something wise or use lots of words, speak to the person silently--send wishes for their healing through your heart to theirs. Send blessings that are for their highest good, blessing beyond what you could ever know will serve them on this difficult journey. Send out all goodness to them as a silent prayer or wish from your heart to their heart.

How to Honor Loved Ones: Post a Story

Honoring the memory of loved ones by writing a beautiful story strengthens our connection with them and supports our own deep desire to be remembered.  Think of a beautiful moment that you shared with someone who has passed and write it down as a gift to them and to others. Keep the link to our ancestors alive and our acknowledgement of the gifts they gave to us.

An End of Life Transmission: 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, holding a steady grace in bed, at ease with the restful peace of this time.

        I reached out for her hand and she opened her eyes wide as pumpkins. She held my one hand in both of hers, and with clear speak, undefiled by the stroke, she began to say my name out loud three times, as if she pushed my name right through me.  She said, “Tarron Janiece Estes….Tarron Janiece Estes…Tarron Janiece Estes”. 

The warm pocket of her hand was still holding mine and like the memory of a common language I said, “Mary Eva Estes…Mary Eva Estes…Mary Eva Estes”. In that short still moment, I felt the meaning and wisdom of her whole life shoot like a star to my heart giving me back everything we ever shared, learned, and loved together.

     I knew in that moment our purpose together as souls, larger than grandmother and granddaughter. I knew that she gave me what is possible in dying and my purpose in serving other at end of life.

One key to liberation in life.....End of Life Reflection Practice

“For any culture/person who is primarily concerned with meaning, the study of death – the only certainty life holds for us – must be central, for an understanding of death is the key to liberation in life”.      Stanislav Grof

 Conscious Dying Education gives caregivers the opportunity to engage in self-reflective experiential activities regarding their own life and death. This self-reflection decreases the gap between current unhealthy life situations and their vision for good life and death.

Self Liberation Activity:

1. Look at the prompts on the photo above and Answer this question in 6-10 sentences: "What earthly burden would I be relieved of if I were to die today?"  Whatever the answer is, you can be sure that lifting this burden is the key to your liberation in life NOW.
2. Identify one simple action that you can take to decrease the effect of this burden in your life.
3. Share this with someone who cares for you, someone whom you trust, and make a commitment to them to take the action within the next week. Ask this person to check in with you at the end of 7 days.

The Founder's Story

When I was a young child, I learned from my mother that caring for others is the fruit of life.

The small town I lived in was a glass house, so small that when someone was sick, or born, dying, or dead, we all knew. Then everyone brought food. They sat and visited, comforting each in their own way, giving to the family and patient equally.

I saw my mother tend to her mother and father through the end of their long long lives. My father’s mother and father, her own sisters and brothers, neighbors, and friends. People called on her to stay with their loved ones who lingered in that half light between life and death. And when the time came, my mother helped them, kept their lips moist, fed them ice until there was no heat left to melt it, patted their pillows, touched their sweet tired cheeks, and held their hands until it was time to go on, to go HOME.

I am a child of many relatives who lived very long lives. 

I saw people in nursing homes who were faint, thin, heavy, sad, lost, but not yet dead. I saw caregivers doing their best and some not near enough. I saw families sitting in miserable chairs in waiting rooms. I saw little ladies lined up along the hall.

In adolescence, I had a friend whose parents owned the town funeral home. We played there after church on Sunday, a day that most families choose to have the service for their dead. We played everywhere in that building. We took the elevator up to the casket room and hid inside them, pretending to be dead. We went down down down to the embalming room and touched the cold still bodies. We hid behind the curtains in the funeral parlor and watched as people mourned for their dead and sang their favorite songs. We saw fathers and uncles and grandfathers break down and fall to their knees while mothers and sisters and aunts and daughters knelt beside them.

So I grew up seeing and knowing death. I became as comfortable with this passage as sitting on a swing outside. Something about this made me want to know life and dig into what it means to pass through suffering and come back with a gift in my heart. Something in me wanted to know how to turn this dying I have seen and the care surrounding it into something as precious as gold. And to bring it back to share with others. It is a blessing to give back what I have been given.

I have cried and fought for my life in both darkness and light guided by teachers whose souls and hearts and brilliant human caring healing gifts taught me everything I needed to remember about who I am and what I came to this earth to do. 

I trusted my life for just long enough with each of them to transform pain and doubt into a desire to give back.

This alchemy, this giving back, is now my work. 

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

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

On Caring Better

"Be very mindful of what is appropriate for you because, I tell you, to stop in this world is to create the conditions where a lot of unusual experiences can rise up. So be very respectful of your situation and proceed with love and with care as well as courage." 

~ Roshi Joan Halifax

It can be a stretch to summon buoyancy rather than burnout in how we work, live, and care. Joan Halifax is a Zen teacher and medical anthropologist who's been formed by cultures from the Sahara Desert to the hallways of American prisons. She founded the Project on Being with Dying. Now she's taking on the problem of compassion fatigue, though she doesn't like to use that phrase. For all of us overwhelmed by bad news — and by the attention we want to pay to suffering in the world — Joan Halifax has bracing, nourishing wisdom on finding this buoyancy in our daily lives. You can hear this wisdom in her own words below.

Hope for The Guest: Poem by Kabir

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Friend, hope for the Guest while you are alive.

Jump into experience while you are alive!

Think...and think...while you are alive.

What you call "salvation" belongs to the time before death.

If you don't break your ropes while you're alive,

do you think your ghost will do it after?

The idea that the soul will rejoin with the ecstatic

just because the body is rotten- that is all fantasy.

What is found now is found then. 

If you find nothing now, you will simply end up

with an apartment in the City of Death.

If you make love with the divine now, in the next

life you will have the face of satisfied desire.

So plunge into the truth, find out who the Teacher is.

Believe in the Great Sound!

Kabir says this: When the Guest is being searched for,

it is the intensity of the longing for the Guest that does all of the work. 

Look at me, and you will see a slave of that intensity."

By Kabir (Version by Robert Bly)

Practice For Death

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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