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The Oncologist, the Patient and CKN — Sharing Knowledge

Part 3 Hospice Series: The Final Ride “Home”

karenhinesserenityroomby Karen Hines, Caregiver

Read Part 1, Part 2

 

Thursday late morning Cassie said “see ya later” to the staff while the ambulance crew wheeled her to the elevator.  Cassie smiled, the nurses returned the smiles amongst tears, we even snapped a quick group picture.  Cass had written on one of the hospital’s white boards earlier that week, “Don’t be afraid, just believe.  Mark 5:36.” She pointed to it as she rolled past.  I tried to smile, but like a zombie, I slowly followed the gurney. Chris and the kids stayed back with our social worker Kathleen.  She spent some time discussing the emotional side of hospice and the idea of “dumping circles”.   She wanted to make it very clear to us that Cass was at the center of the circle, the rest of the Hines 5 were in the next circle, followed by Ashley’s almost fiancé, Jeff, along with the rest of our immediate family and close friends.  The final circle was “everyone else”.  Only support goes “in” and fear, whining, complaining etc. is dumped “out”.  This simple concept was how we were to control what was about to happen at our house for what would be the next 40 days.  Kathleen made it very clear that it is our job to protect each other.

 

Cassie’s serenity room was painted a pale blue with various sized happy soft white circles resembling bubbles on two of the four walls.   Against one wall, there were two white comfy chairs positioned on either side of a table that was loaded with flowers. Colorful artwork filled the walls; cubes were stacked and filled with framed pictures and memory books. In the corner, there was a large chair that morphed into a twin bed each night. Since the room was a dining room originally, soft curtains were hung to close the two entrances making the room more private when Cassie needed to sleep.  Each side of her bed had a small cushioned stool.  It was a truly peaceful space created to help Cassie transition from this world and for the rest of us to make sure there was “nothing left unsaid”.

 

The first weekend at home Cassie had pretty good energy, the house was constantly full and food was abundant.  There were more laughs than tears, most of the talk was “Remember the time when…” There was a moment for me a couple days in when I noticed Ashley sitting quietly in the family room.  There were a few others in the room but most everyone else was in the kitchen or the serenity room with Cassie.  I knew something was up.  I seized the moment to check in with her when she went upstairs for a nap.  We lay on my bed and after some small talk she vented.  “I hate this all. I hate the serenity room, I hate the colors, and I’m irritated by all the chaos.  She’s MY sister, I want to sit on the stool next to her and hold her hand but I’m not going to push people off.  I just HATE THIS!!”  She was expressing what we were all feeling.  It was time to activate the dumping circle rules; we needed more control over the house.  Chris walked into the room while we were crying and we came up with a plan together.  Not knowing how much time we had left with Cassie we limited the visitors to one circle past us on the “dumping circle”.  We put a note on the front door thanking those dropping off food or coming over to support us and hoped they understood we needed this time for family.  This necessary move brought us to the most amazing God-centered time spent with those we love the most.

 

With the new house rules each family and friend was able to have time alone with Cassie.   The stools located near the top of her bed became the place to spend some unforgettable time with Cassie.  Everyone close to her heart sat by her side and prayed, talked, laughed, cried and shared stories.  Cassie made everyone feel comfortable with her end-of-life journey.   I can’t even tell you how many people came to our house terrified and left with a sense of peace.  Each night at least one of her inner circle slept in the serenity room.  Sometimes Cassie woke up and talked but mostly she slept.  In the mornings she had the most energy, she was feisty and determined (which is code for challenging) but she was also very funny.  She was “packing for her trip” which the hospice nurse told us was part of the process. Cassie’s transition was part of the unknown we are all nervous to think about.  Our family had spent years confident Cassie could beat cancer back until there was a cure for her.  We never thought much about death.  Even in the final days we believed in miracles and knew anything is possible with God. Those 40 days were exhausting, in any given hour our emotions would span from sobbing uncontrollably to laughing so hard our stomachs hurt.   It’s not a time life prepares you for; our focus was staying in the moment.

 

Cassie took her first breath on October 4, 1990 in a hospital bed with a doctor, nurse, Chris and me, while Ashley was waiting to hear us say, “It’s a girl!”   She took her last breath on March 1, 2012 in a hospital bed with a nurse, Chris and me, while Ashley was in the other room.  She was “home”.  They say the person decides who will be in the room when they leave this world; in Cassie’s case we believe that to be true.  Ethan was in school the moment Cassie died with his phone on his desk praying he wouldn’t get the text “COME HOME”.  That signaled there wasn’t much time left.  When the text arrived Ethan ran out of class without explanation; none was needed.  Cassie loved the dramatic; she was smiling at the scene this caused in his high school. Jeff was heading back to the house from work with an arm full of papers.  A gust of wind caught the papers and they went flying. Cassie loved (and probably caused) that too!  She left this world on her terms, with Jesus holding her hand they walked through heavens gate and through our tears we were confident He said to her, “Well done my good and faithful servant.”

 

The greatest power death holds is not that it can make people die, it’s that it can make the ones left behind not want to live.  Death is always perceived as the enemy but in truth it’s the natural course of things.  We continue to pray that God will grant miracles.  When you surrender to God’s will, it’s not giving up hope but just knowing you’re in God’s hands.  A miracle did happen when Cassie died, we are the miracles.  When the word hospice was first mentioned we were panicked; it was a trek into the unknown.  We needed each other and God to survive. We needed a miracle and it came in time.  After sinking into our personal grief process all of those in Cassie’s inner circle have enjoyed true laughter and life again.  Since Cassie’s death we have celebrated graduations, weddings, and new babies with pure joy.  Sadly, we have mourned the death of others close to us.  It was Cassie’s death that gave us hope and we are able to trust in God and the grief process.   We are all meant to be here for a time, I surely don’t understand the “why” and I won’t spend much time trying to figure it out.  For me, I will continue to believe in miracles, trust in God and His plan for life while respecting and appreciating the beauty of going home.

 


 

Karen Hines is a mother of three, a wife of 30 years, a full time dental hygienist and the dynamic Awareness Director for the Cassie Hines Shoes Cancer Foundation – Changing Lives One Step At A Time.  www.cassiehinesshoescancer.org 

 


 

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One Response to Part 3 Hospice Series: The Final Ride “Home”

  1. Dawn Gietzen says:

    You truly have a gift with words. When they told us hospice with my Dad I was so angry. I felt they had given up on my Dad and I had not. Our hospice was a short mere days and our inner circle my Dad’s Fab 7 stayed together in that cold hospital room I was so confused silently wishing we could bring him home at the same time silently wishing he couldn’t come home and die there.

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