“The Birthing of a Soul: Lessons from the Dying” by Hospice Nurse & Elder Debuli

     

“Death is not extinguishing the light; it is only putting out the lamp because the dawn has come.” 

--Rabindranath Tagore

               My work was my passion.  I was passionate about helping people at the end of their lives.  All of them, except many of the very elderly, wanted to live, but if this was not possible, they wanted a good death, free from pain as possible, with dignity, and having their choices honored.  Yet even when a person has contemplated his own death, it comes as a surprise, even a shock to hear those words from your doctor that the time is close.  Still there is a beauty and an urgency to living the final days of one’s life.

               I have a mental picture of walking into a hospital room or a home filled with family members. Their eyes-- filled with fears, questions, and sometimes despair-- were all on me.  Trying to put all my cares of the day aside, my first job was to listen and speak as little as possible and hear deeply their stories.  There was often anger, tears, fears, and stories of the limits of modern medicine that often gave false hope to the dying and their families. Space and time needed to be created for them to tell their very personal story.  

            Everyone, including the shy and reluctant ones, needs to be heard, and most importantly the patient needs to tell her own story.   “Hurrying delays the things of God” is especially true in these moments.  

            As a hospice nurse, I also came to understand the importance of hope, since the future is unknown to us all.  Hope comes in many forms and as the dying process unfolds, it changes.  Miracles can happen but are rare; most hopes center around planning for things in the future that one wants to do—see a baby born, take a special trip, have a family gathering.  And ever so delicately this holding onto hope must be tempered with honesty about the most likely outcome of death, or trust will never be established with the hospice team.     

 

             The dying are always our teachers.  In the Middle Ages, hospices ran by religious orders were gathering places for soldiers and the wounded from the Holy Wars, including the sick and dying.  Persons gathered around the dying to learn their wisdom. They believed that as their body grew weaker, their spirit grew stronger and more luminous.  I felt this too, as each family taught me something different.  It seems persons can orchestrate their own death.  They have choices—to be alone or with a cherished person or have a whole family with them in those last days. Every person dies in their own unique way.  Still as the waning weeks turn into only days, similarities appear:  the body gets weaker, the need for food and then drink fades and most dying withdraw and want only their most cherished persons at their side.  Words become less important than touch and simple comforts. 

One veteran died on July 4^th as city fireworks illumined the sky and his whole family surrounded his bedside.  Their grief was tempered by the synchronicity apparent in that moment.  A sweet elderly woman died after her stepson finally arrived; he made a long trip to see her, then sat in his hotel room unable to take the next step.  Finally, after many urgings from hospice team and family, he came.  His frail mother in a voice barely audible said to her slightly unkempt, middle-aged stepson--“don’t ever change; we love you just the way you are.”  And then she took a breath and was gone. 

 One woman died the day her daughter returned.  As her daughter was sharing stories of her mother’s difficult life, we bathed her together, ever so gently cleansing this tired woman’s body.  We were laughing and crying with the memories of a life finally forgiven and loved in spite of the trials she had suffered.  Love was there as she quietly and peacefully took her last breath.   

Sometimes the worst wounds are not physical and these are much harder to soften.  Naturally, there is an urgency to the days at the end of life:  to gather people in, tell the stories surrounding this life, and mend the broken parts.  The mending can often be done, but sometimes the cracks are too deep.  When the healing is impossible, we as caregivers must just try to be kind, give mercy and be a presence as a counterpoint to the emotional pain that has been endured.  

 Ultimately, dying, as life itself, is a mystery.  As I told families over and over, we see through a mirror dimly on this side of life.  In the end, these five simple things are important to say:  Forgive me.  I forgive you.  Thank you.  I love you.  Goodbye.  When I started hospice work, I thought the deaths would be agonizing, terrible.  What I learned was that they were almost always peaceful.  

Dying is sacred; it is a birthing of the soul.  Yes, those around the bedside feel helpless to reverse the course of life’s end, but at the same time, their presence is sacred and affirms this precious life.

                                                   

--Elder Debuli

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