When I sat down to write my blog today, I had an entirely different topic in mind.  However, something tugged within me I could not identify.  I began to write about my original topic. The tugging grew.  I sat quietly for a few minutes, then I opened up a document in my laptop.  It was an outline and notes of a book I had thought about writing. I believe I needed to share some of it with you.  Over the next few days, I am going to share some stories from my notes about caring for the dying and their family.

I spent the last 15 years of my career working in palliative and hospice care.  I have walked along hundreds of individuals, family, friends, and strangers as they live out the last days of their lives. During my first interview at a hospice organization, I was asked by the chief executive officer, “Why do you want to work with dying people?”  I replied there's a partial quote from Stephan Covey's book The Seven Habits of Highly Effective People that goes something like this,’to touch the soul of another human being is to walk on holy ground.’  And, I do not know any more holy ground than when a dying person and their family lets you into their life during the last chapter of their path.”

 As a nurse, I received formal education through institutions of higher learning and through training provided by the organizations where I worked.  I was knowledgeable about the rules and regulations governing hospice and palliative care.  I knew how to assess a dying individual, and I knew how to create and implement a plan of care for the individual.  I also knew how to manage symptoms, and I knew about loss and grief.  What I didn’t know was how to be with the dying and their families.  I learned a great deal from each dying individual and their family.  

My world of caring for the dying developed over my lifetime.   I would like to think I did this work to serve others, however I am not convinced that is true.  I am quite sure  I got more for myself than what I gave to others. Every individual and his/her family have their own steps they danced at the end of life.  Perhaps, it's the beautiful flowing movements of the waltz or perhaps it’s a  complicated intense tango. No dance is the same. My role was to learn their dance steps and teach them some new ones when needed.  

Here is my first story:

It was a chaplain who originally taught me the basic dance steps.  He was there when I was sent, by my supervisor, to a home to pronounce the death of my first patient.  My supervisor quickly talked me through the process.  Granted, I had cared for patients in a hospital who had died, but never in their own home. 

When I arrived at the home, John, the chaplain, gently guided me across the floor through the house to the bedroom, like we were waltzing.  Upon reaching the bedroom,  I gently laid my stethoscope on the patient’s chest, I heard no heartbeat or breath sounds, and saw no rise and fall of the chest.  I turned to John and shook my head.  Not quite sure what to do next, John seemed to read my mind.  He  turned to the family standing in the doorway of the bedroom and announced the time of death.  

I did not have the words to help comfort the family other than, “I am sorry for your loss.” nor did I know how to be with them.

From that moment on, I listened to John talk with the family and watched his interactions as he spoke with them.  He gently and kindly directed me through what I needed to do, call the physician, call the funeral home, and he cared for the family.  

A few weeks later, early in the morning, about two hours before the office opened, my phone rang. I had been on call that evening, it had been a quiet night.  I answered the phone and heard the service operator tell me a family member had just called and reported their loved one had just died.  The operator gave me the name of the young husband (I’ll call him Luke) and his address.  I looked up the patient’s (I’ll call her Megan) information to discover she was in her early thirties and was the mother of two toddlers  and an infant. She had been discharged from hospital the day before.  I knew I needed help with this, so I called John. 

When I heard John’s voice on the other end of the phone, I took a deep breath and told him Megan had just died.  “Would you please come?  I am going to need your help to dance me through this.”  Without hesitation John replied, “I am on my way.”  

As luck would have it John pulled into the driveway right behind me.  I rang the doorbell and Luke answered.  John and I entered to find Megan lying on a hospital bed in the living room.  I pronounced Megan’s death.  John stood beside Luke, who sat on the side of the bed next to Megan.  Quietly tears began streaming down Luke’s cheeks.  “Where are the children?” John asked. Luke replied, “Upstairs, I think they are playing on the bed in our room.”  John told me to go ahead and make the necessary calls and he went to care for the children.  

When I asked Luke about the funeral home, he paused and gave me the name.  Then he told me her body was not leaving the home until her sister arrived.  When I asked where her sister was coming from he told me Chicago.  We were a three hour drive from Chicago.  Luke informed me the sister was flying, which meant she could be here in less than an hour.  He said she was at the airport and was probably already boarding the plan.  John was still upstairs with the three young children. 

I asked Luke if there was anyone who could care for the children or take them while we waited for the sister to arrive.  Fortunately, there was a close neighbor and friend who was available and took all three children to her home.  I don’t remember much about what the children knew or how they were handling the situation.  I was just grateful John was managing the care of them.  Within a few minutes, the friend arrived and took the children to her home.  

Not wanting to leave Luke alone, John and I decided to stay with him until his sister arrived.  During this time John taught me another dance step, how to bequiet, useful, and stay out of the way.  John put a load of towels in the washer that was lying on the floor next to it, and I began washing dishes.  Luke stayed at the bedside next to Megan’s body.  Every few minutes John would peer out of the laundry room to check on Luke.  It was clear Luke just wanted to sit in silence, so John and I stayed busy cleaning the house, sweeping floors, making beds, and any kind of task we thought would be of help. 

Megan’s sister arrived about three hours after John and I.  She took control of the situation, Luke looked relieved to have her there.  He gave me permission to call the funeral home then.  I finished the call to the funeral home, Luke declined having John and I stay until Megan’s body was removed from the home. John and I gave our condolences and said our goodbyes.  

I was emotionally spent and still had a full day ahead of me.  However I learned another great lesson.

Lesson learned:  Being present and helpful does not always mean you have to be talking to or caring directly for someone.  Sometimes it’s the smaller things that will matter.  

Tomorrow, another story..