“The word “hospice” comes from the Latin “hospitium” meaning guesthouse. It was originally described a place of shelter for weary and sick travelers returning from religious pilgrimages. During the 1960’s, Dr. Cicely Saunders began the modern hospice movement by establishing St. Christopher’s Hospice near London. St. Christopher’s organized a team approach to professional caregiving, and was the first program to use modern pain management techniques to compassionately care for the dying. The first hospice in the United States was established in New Haven, Connecticut in 1974.” Medical Author: William C. Shiel Jr., MD, FACP, FACR
Between 2001 and 2014 I had five different hospice experiences. My first was with my father, then my mother, followed by my brother, aunt and lastly my uncle. Each situation was different. Each person and my relation to them was different and each hospice agency was different.
Three of my family members were in Florida when hospice was called in to help and my other two family in need were in Michigan. I am not preaching about what I feel is best for anyone reading my experience. Instead, I share how hospice helped my family members pass with caring support and comfort measures, when all other options were exhausted. And, I share the feelings that were overwhelming for me. I imagine it is for many other caregivers faced with making decisions surrounding end of life options and care, as well as the grief and sometimes relief that comes with hospice care and saying our final goodbyes to those we love.
When the hospice option was presented for my father, it was my first experience with making such a decision. I recall feeling stressed, torn, overwhelmed and not ready to face this life and death decision making experience. Specifically, the choice presented was to have my father fed via a feeding tube or to call in hospice. Fortunately, I had my sister to discuss our options. The doctor in charge of my father’s care was in favor of the feeding tube. My father was unable to eat without aspirating, specifically, the food would infiltrate his lungs as his ability to swallow any food, including pureed, put him at high risk.
I found no major difference between the two states where my family members received hospice care. With each agency, staff included a physician, social workers, hospice nurses and chaplains. The hospice care and goals were the same, and with each hospice agency the care was similar, but the personalities and systems were different. For me, the personalities and the communication had the most impact on the process and how I and/or my family member in need coped with the experience. Each family member presented different needs and issues, so each time I learned or experienced new feelings.
Having a family member under hospice care came with an array of mixed emotions. In terms of health concerns, the feelings were mixed. Reality tended to sneak up on me. Sometimes I was hopeful, but much of the time I feared impending loss and I felt helpless and hopeless. I realized that some of what got me through these times was hanging on to hope for whomever I was caring for at the time. Seeing them suffering left me feeling defeated and hopeless during especially difficult times.
Health and hope are what I wished and prayed for with each family member for whom I helped. Most of the time, I was in another state than my loved ones. This was challenging but knowing that hospice was involved gave me some sense of solace. With my mother and my aunt, hospice care prolonged their lives. My aunt lived a year from the time hospice care started. The extra care and attention, including a volunteer, who visited my aunt with her five-year-old little girl provided hope and joy and caring attention. I was in another state, so I spoke to my aunt by phone daily. She loved telling me about the little girl who came with her mother to visit her and brought her gifts, such as a handmade throw blanket. I believe that the attention she received prolonged her life and increased the quality of her life. It was comforting for me to know that someone who cared was able to visit with my aunt, when I could not be there for her.
Hospice is not something everyone trusts, believes in, nor sees as an option of care for various reasons. For some, there is fear that calling hospice in to help, is tantamount to a death sentence. In my five experiences, I found the option to be the best under the circumstances. Watching someone suffer despite all medical options provided was something I had a very difficult time watching. Hospice offered an alternative, which included palliative care, which meant comfort care. To me, it seemed to be the most humane approach to helping my loved one’s cope with some very difficult end of life situations.
One of the most surprising feelings and experience was when I was by the bedside of my loved one and watched them take their final breath. What surprised me most, was that even though I knew death was imminent, when the last breath was taken, it was as though I never knew it was coming. My breath was also taken away. I recall feeling shocked. My whole body shook, and the tears seemed to be unending. For me, even knowing that death was near, it was as though I never knew it was going to happen. Thankfully, I had supportive people with me; something that I didn’t know beforehand just how important that would be for me when the time came to say my final goodbye.
Caroline Sheppard, MSW, recently published a book focusing on her long distance caregiving experiences with five family members spanning a fourteen-year period. She hopes her stories and experiences can help others facing caregiving from both far and near, by sharing difficult yet rewarding lessons learned. She became a caregiver while on a leave of absence. She soon found her life and priorities so changed that she never went back to work.
Caroline has been a social worker for her adult working life, with a specialty in families, children and schools and has been certified as a trauma and loss specialist. She has written three children’s books: “Brave Bart,” a story for grieving and traumatized children (which is still in print), “Shadow Moves,” a story for difficult and traumatic moves and “Brave Bart and The Bully.” Two of these were illustrated by her brother who sadly passed away before the third book was completed. She was also his long distance caregiver.