From the web site I received a request asking me to tell how I first began my job at Hospice Care of Mid America in Kansas City Mo. In 1981 there was one hospice in Kansas City and that hospice was Hospice Care of Mid America. It was an all volunteer hospice as were most hospices at that time and it’s only funding was from donations. They were taking a big step and looking to pay an RN to provide patient care.
I had just moved to Kansas City from Nebraska and was looking to make friends. I attended a Comparative Religion class at a local Unitarian Church thinking I would meet like-minded people. Here is where my belief that there are no coincidences and all is Divine Order comes through for me. There, in the class, was the Volunteer Coordinator of Hospice Care of Mid America. We began talking about Hospice and my interest in this budding new concept for end of life care. After much talk and a few classes later he suggested I talk with the Director of Hospice Care of Mid America and apply for the RN position. I was not ready for the full time job but after meeting with the Director said I would volunteer 20 hours a week to assist the RN they would hired.
Jody Gyulay, PhD, RN and I began seeing patients in 1981. Four months after volunteering I became part of the paid staff. Together with Kevin Flattery, Dennis Henderson, Sister Mary Shields and Paxton Small, PhD, Jody and I helped mold and grow that hospice.
There were no payment sources other than donations, no “How To” manuals on providing patient care, no medical supplies, no new medical equipment. We used bed pads made out of newspapers covered in old sheets, mayonnaise jars for urinals, Udder Ointment for skin care, old hospital beds, and donated wheelchairs and walkers. What we lacked in knowledge and supplies we made up for with time and presence. We learned how people died by being with them. For hours and hours we’d sit at a bedside, supporting a family, guiding and nurturing them as we all held vigil for their loved one. We learned how scared families were by listening to them. We learned that eating decreases months before death arrives, that sleep increases, withdrawal is normal and that pain comes from disease not from dying. We learned how breathing changes and a face looks as the last breath is drawn.
My time at Hospice Care of Mid America was a time of pioneering. There weren’t workshops or books on end of life to teach us how to provide care. There were no protocols or guidelines, no schools to attend, no certifications to be obtained. We literally faced whatever was presented and acted in the direction our hearts, instincts and common sense told us to go. Out of those experiences came knowledge and growth not found before. In fact, the reason why I wrote “Gone From My Sight” at that time was because there was no written information on end of life care for professionals let alone for families.
Eventually I become Patient Care Coordinator and later Executive Director of Hospice Care of Mid America. Our census grew as knowledge of Hospice became known. I will always remember and cherish those learning, early days as our Camelot period. Care not encumbered with regulations, unnecessary medical procedures and intervention or reimbursement issues. Care truly directed by a vision and a passion, that ideal of providing services and support based on quality of living and quality of dying.