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Many Heartaches in Hospice – One Family
This article is one that weaves together reality for a family; professional growth for those providing care and techniques of listening with all your senses in order to provide the best care possible in the worse possible times. For some I think it may be meaningful. it may enhance best practice among clinicians. It may help to dispel hospice myths of the work being done by those who work with patients and families. Hospice care does not end at the death of a patient, it extends to the families and those who loved the patent, often involving attending funerals, memorial services and providing bereavement follow-up for months after a death. This article speaks to one such family, and one such patient. It was the ending of a life. A life that involved a young man, diagnosed with a rare and rapidly progressing cancer diagnosed on January 16 ending with death a little more than a month later.
The family dynamics were yet another shock to the system, dysfunction added to the trauma of impending death that required crisis intervention lasting approximately seventeen hours, utilizing the talents of an interdisciplinary team (MD, RN, Chaplain, Volunteers, and Licensed Clinical Social Worker (LCSW). Those dynamics included the patient, his mother and father, a sister who was the power of attorney (POA), a fiance, the wife (with whom the patient had been separated from for more than a year, although not legally), two beautiful children ages 14 and 10, and supportive friends, each forming their own division of “camps”.
The children had just learned that their Dad was dying less than twenty-four hours prior to death. The patient was lucid right up until his death, and asked that the team attending to him not let the ex-wife in to see him. He stated that his fiance was the love of his life and expressed his profound and heart-rending worry for her. This young man had shared with me that he hoped to have some time to “get used to” the fact that he was dying. He said those very words to me just twenty-four hours before his death. It was indeed a time of tremendous stress and heartache for all, including the team of seasoned professionals.
We again witnessed a complicated family system that that challenged beliefs, of an entire family and the team in the Acute Care Unit. Many of us looked at this patient and saw visions of ourselves and for some their families as well. He was but forty years old, his life just beginning.
How very tragic. No one ever said that life had to be fair, we all need reminding of that it seems. With the patients’ mother, dad, sister, fiance bedside, I found myself running up and down the halls attempting to facilitate balance between those very divided and dangerous “camps”. The fiance was safely kept from the ex-wife, as threats had been witnessed and seemed to be escalating. The children were brought in and out of the room several times in order to allow them the opportunity to be with their Dad, to lay beside him in the bed, to sit and be held by his mother, their grandmother. There were multiple hours of play therapy, reality therapy, compassion and hugging for two children who were being torn apart as they were all to quickly realizing that death was imminent and lasted forever.
At times feeling like the CIA/bodyguard, I ushered people in to see the patient; I escorted people out, and I held family members and friends in my arms while attempting to validate and embrace their pain and anger. I was constantly amazed by the patients’ ability to put his arm around his children and family, maintaining his honor and pride. He would look at them in a way that words cannot describe, and with an intensity rarely seen.
At one point the patient raised his arm with tremendous effort and with an unsteady hand wiped a tear from the 14 year old’ eye, and said, “It’s alright now, I love you. I will always love and protect you.” The child placed his head on Dad’s chest, lying across his body and wept silently. The intensity of the day was not lost on anyone. There were several times that the hospice team shared a private moment, a moment of tearfulness, much-needed hugs, while digging deep to find the needed strength to continue the necessary work. Hours filled with end of life issues, conversation, nursing and counseling. I observed pain that was controlled by an experienced, talented, caring RN as she coped with her own professional pain. Spiritual support during crisis interventions addressing, validating and normalizing the myriad of emotions: anger, forgiveness, belief systems, and doubts. Support that that only our hospice chaplain could provide. She used her forte and proficiency that gave each person a permission of sorts; to be open with their feelings, their frustrations, and their pain. And it was by the use of her know-how that she was able to remind these people of the higher power that would be with them long after this day was put to an end. While heart breaking, this patient and family had indeed put true hospice philosophy to action. The pioneers of hospice would have been proud indeed.
The day stretched into night, into midnight. Funeral plans had to be made. As painful the thought, those plans had to be put into motion. The parents, sister, fiance all were unsure of what the patient would want, cremation vs. burial. The dynamics were fragile regarding services. Should they have two? One for the family and fiance, and one for the ex-wife and her family, there had to be another option. What would he want? After exploring the options, the concerns and fears, the parents thought the ex-wife might have a better idea of the patients’ wishes. After speaking with the ex-wife I discovered that the patient had a horrible experience as a child after going to a wake. He thought a body on display was barbaric, and at one time had mentioned cremation. This information was shared with the parents and the sister who was the power of attorney. A funeral home was selected after we examined the many options. Then the call was placed to the funeral home to give demographics and to share the potential for conflict at the time of services. The funeral home staff was wonderful, they understood the family dynamics; they came to the hospice unit, they met the patient, and they were extremely caring and patient themselves! Cremation had been decided on and I informed the funeral director. It was then that I learned that the power of attorney could not authorize cremation, nor could the parents.
Although the patient had been separated for one year, it was not made legal through the court system. As a result, the ex-wife was legally the only person to authorize cremation of the patient. As instructed I prepared paperwork for the ex-wife to sign, stating her authorization. After presenting this paper, the ex-wife decided against signing. The plans had to be changed. Times were beyond tense. Remembering the only constant in the world is change, I called the funeral director and prepared him for the changes that were coming! Good working relationships with funeral directors are a wonderful thing during times of little rest and family conflict to be sure, and a good sense of humor in times of great heartache and stress are a definite plus. After much conversation between the “camps”, it was decided that the patient would be buried and there would be a graveside service. Those decisions could in fact, be made by the sister the power of attorney. The parents selected a plain but beautiful wooden casket.
The morning light greeted hospice with our patient now non-responsive, peaceful. It was good that he did not have to be a part of all of this craziness, the arguing, the hysterics and drama. He was such a kind man. His parents, sister and fiance had spent the night bedside. At some point the ex-wife, friends and children had gone home. As the sun rose, peace had also come, the fear of fighting gone for the moment. The children had said their final good-byes. All were exhausted by the intensity of the night. Quietly and peacefully with those who loved him at his side, our patient died shortly after noon. The ex-wife was called, the children were told, and she prepared to come to the hospice unit and view his body for the last time. Hours later, and I mean hours later…the funeral home was called to come. The parents, sister and fiance all exhausted prepared to leave, saying good-bye for the last time. The plans were set. The stress continued. The chaplain would conduct part of the service, with the patients’ uncle, a minister conducting as well. Upon arrival at the cemetery,
It was remarkable to see so many people. All standing outside the funeral home office, cars lined everywhere. More than one hundred people had come to say good-bye. Children were running around on this painfully sunny day. I had promised to attend in order to provide support and comfort to the families, to be available to the children. I stood watching as people approached the graveside, all watching for the casket to be carried and carefully placed. Five grown men and one 14 or 15 year old boy carried the casket. This young man had tears on his face as he looked down while carrying the head of the casket. The family took their seats… Parents, sister, 14 year old, ex-wife, 10 year old. The fiance appeared lost in the crowd, standing to the back, weeping. It was then that I realized she probably needed reassurance to stand closer to the family. With gentle guiding, she made her way to stand directly behind the patients’ mother. Placing her hands on the mothers’ shoulders she listened as the minister and chaplain attempted to speak to the painful mourners. It was so quiet.
I found myself looking at all those faces; faces streaked with tears, friends, acquaintances, family, adults, children. I was not surprised when I saw the face of my colleague; my friend the RN who attended to and cared so beautifully for our patient in the final day of his life. It was then that I heard them, the sound of chimes blowing in the gentle breeze. They were soothing, but where in the world were they coming from? I felt an old familiar pain in my heart, and I remembered. In that moment there was healing, and I knew I would provide comfort with the story. I also knew in my heart that spirit guides were there and they were welcoming him to the other side. I know it to be real, not because I can prove it, but because I know it in my spirit and I know it as my truth.
The service was over. People were slowly returning to their cars. Friends were embracing each other, words of comfort could be heard, the “camps” each lowering their swords and receiving support from others. I found myself counseling friends and children, being asked to spend a few minutes here and there. It was then the story could be told.
I told those gathered around that I had a story to leave them with. I asked if they had heard the chimes. They all had, and they thought it ironic that chimes could be heard during a service at a cemetery. I smiled and told them it was time to begin the journey toward healing. I have yet to share the name of this patient, but for now let us call him “Tim.” It was two years ago. I was attending the funeral of Baby Janice. She was so little, so many who loved her, even if only briefly. The little casket was carried to its final resting spot. At the end of the service I was approached by Baby Janice’s brother, he handed me a flower to put on the casket. He was about 5 years old. His name was “Tim.” As I knelt down beside him, I saw that he had a lovely set of chimes in his other hand. He asked that I lift him up to the tree. He crawled up on my shoulders and ever so carefully placed the chimes in a tree nearby. As I sat him back on the ground, I again knelt beside him. It was then that he gave me the gift of his wisdom. He said, “I am hanging these chimes for baby Janice. They will help her not be alone. And most of all, when they make their music, well, it will be from baby Janice when she welcomes others to heaven so they won’t be scared.” As I hugged “Tim” and said good-bye, I felt as though I had been given the gift of a lifetime, and from a child wise beyond his years. Since that time, the dance of life has continued.
There have been multiple deaths, all affecting communities of people suffering loss while struggling to find a path to healing. Once again, I received the gift of healing… from a little boy with the same name as the grown man who was buried that day. The breeze gently blew and the chimes provided comfort to so many without their knowing why. This time I was able to share the story, to offer a path toward healing to those standing on unfamiliar ground. It may be that they have learned to walk in beauty differently than ever before. Hospice happens; stories like this occur across the world everyday with most people saying, “I wish I had Hospice sooner, I wish I had known all that hospice people do”.
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