Bonus Round Caregiver Pages
Toward better patient/caregiver communications
HANNAH, Hospice Social WorkerSUSAN*
47. Cancer.Today I was among Angels.
The day I met Susan, she was being stuck by a very apologetic hospice nurse who could just NOT find any viable veins. Susan's large arms were black and blue and she patiently sat still awaiting yet another stick. I offered to hold Susan's hand. I could feel her anxiety level rising. She quickly removed her hand clenched tightly beneath the covers and latched onto mine. We sat in silence for a while.
Susan was only 47, a foster mother to over 27 children in her lifetime. She had decided to adopt her daughter Kristen whom she had met when Kristen was 2 years old and came to live with Susan. Kristen had 2 other biological siblings who went to live with a foster family, a couple named Sherrie and Todd.
Two weeks ago, Susan reluctantly made the most difficult request of her life. She asked Sherrie and Todd to take Kristen so that she could be with her siblings and have a real "family". Susan knew that her time was limited. Within minutes of my meeting Susan, she requested my word that I would contact Kristen, support her through this difficult time and continue to work with Kristen after she was gone. She wanted reassurance that I would continue to provide the support that her 8 year old daughter so desperately needed.
She told me that Kristen had moved out one week before and was adjusting to her new home, her new family, her new life. Susan's big, clear-blue eyes pleaded for my promise. I gave her my word without hesitation and assured her that we would continue in the work that she so bravely began. I could feel my own throat closing up as I choked back tears, and I could do no more than sit quietly with Susan and rub the soft skin on her black and blue arms as the nurse continued to attempt to draw her blood.
I left a message for Sherrie and Todd to call me so I could schedule my first visit with Kristen. Monday evening I received a call from Susan's nurse requesting that I make another visit to her home. She had been more and more withdrawn and the nurse felt the additional support would be helpful to her.
Tuesday morning I arrived at Susan's house to find her mother extremely tearful and overwhelmed with Susan's increasing caregiving needs. She shared with me the argument she'd had with Susan moments before my arrival. She was desperate and in her desperation had said things to Susan that she never meant to say. She told me that she was worried that all Susan's numerous caregivers would need specific instruction and she didn't know how she could assure that her daughter would receive necessary care. She herself was helpless to assist with the physical demand that Susan was increasingly requiring.
I discussed these legitimate concerns with the family and recommended the Hospice House where Susan could receive excellent care and support while her various caregivers could receive training from the nurses directly-- on their own time. This was a relief to Susan's mother and to her roommate and devoted friend Rose. Susan pretended to be sleeping during our conversation. I had a feeling that she had heard every word. I left the family to think about what we had discussed, but I left feeling that Susan seemed changed that day... somehow resigned and defeated.
Susan was transferred to the Hospice House on Wednesday afternoon during a cold and dark snow storm. She had left her home for the last time. Today is Friday. I received word that Susan was actively dying just as I was about to schedule my daily visits. I went to her room to find her brother and his fiancee at bedside having flown in from California and arriving moments before. Her sweet Rose was also there. The nurse was attempting to reach Susan's mother to inform her that Susan was preparing to die. She was peaceful, but had a rather loud death rattle that rang in my ears.
Soon Susan's mother arrived and immediately began to stroke the face and forehead of her child, whispering words of reassurance as she began to sob. Susan's father took Susan's hand and clung tightly to his wife. As she continued to plead for her daughter, Susan's brother became wracked with sobs. Soon the friends began pouring in. I wondered why Susan was holding on. Her blood pressure and respirations were barely audible to the nurse, and I questioned the appropriateness of contacting little Kristen. I pulled Rose aside and together we asked Susan if she would like for us to call Kristen. In a moment of clarity, Susan opened her dying eyes and nodded "yes." We excused ourselves and left the room to contact Kristen's newly adopted parents Sherrie and Todd.
I got an answering machine. I left a message for them and informed them that Kristen's presence had been requested by her mother. I explained that it appeared that Susan did not have much longer. I had no idea whether or not Kristen would have a chance to say her final good-byes.
I re-entered Susan's room hearing the sound of angels. Susan's closest friends were gathered around her bed singing the songs of praise that she so enjoyed. Rose led the group in song, her melodic voice soaring, her strong faith and spirit shining through as the others joined in. I was stopped in my tracks. I drank in the moment feeling truly a part of something special.
Susan's breathing remained steady but labored and I found myself praying for her struggle to end when little Kristen walked through the door. She was accompanied by Sherrie and Todd who were initially uncomfortable but quickly seemed at ease once allowing themselves to be "present". She asked her uncle why he was crying and then asked if her mother was "going home". He nodded that she was and hugged Kristen tightly as her own tears began to fall.
He lifted her up onto Susan's bed so she could kiss her mother. She questioned Susan's breathing, wanted to know if Susan was hurting... struggling to understand everything that was happening around her. The entire roomful was sobbing and although it was soft and muffled, it rang in my head and I hated the unfairness of it all.
Kristen warmed up to me immediately. She left the room comforted by Sherrie and Todd as the nurse began to suction Susan in attempts to keep her comfortable. Moments later she entered her last stretch of labored breathing. I went out of the room to check on Kristen.
She began to ask me questions about the Hospice House. She wanted to know if it really was a "house", wanted to know if the hospice dog lived there all the time. I offered to take her on a tour of the building. She quickly took my hand. We ended up in the chapel together, little Kristen on my lap as she drew a picture for me. As Susan peacefully took her last breath, she was held in the arms of her mother and surrounded by so many who loved her. At that same moment, as Susan took her last breath, I held in my arms the one she most lovingly adored.
I am a changed person today. I was taught a great lesson about faith and acceptance, the power of love and the triumph of letting go. I am a stronger woman for knowing Susan and a blessed person for knowing Kristen. Today I was among angels.
HANNAH*
*All the names, dates and locations in Hannah's story have been changed to protect patient privacy. These stories are offered to the reader as part of our ongoing patient/caregiver communications program sponsored by Bonus Round Inc. All materials © 2001 by the author. http://www.bonusround.com.