Not every story has all the elements of a great hospice case, but my experience with Sister Jeanne and the family of nuns around her is worth remembering. In my opinion, one important element of hospice care is that if the dying person is intellectually aware enough of the diagnosis, there is work to be done on preparing for the end of life's journey. Sister Jeanne was really at 100% on this element. She was a college professor in music, blind for most of her life, and wanted to be in charge of her remaining days. We had many fascinating discussions in the few weeks I cared for her. She had always tried to avoid being ill, so the role of a sick person was an unfamiliar one. We talked about her life of giving and serving, and now of receiving the care of others. Giving is easier, we decided. I tried to give her clues about her rapidly declining condition so that she could complete any unfinished business. She took my cues and got her hair permed, went to a Christmas party by wheelchair, and received the needed sacraments. Sister Jeanne spent the remainder of her conscious days in bed "grounded by her boss"-her supervising hospice nurse, as her friends came to her with love, greetings, and their continual quiet presence.
Sister Jeanne's calling me "the boss" is another interesting element of hospice. I told her she was my boss when it came to her comfort. Many times we considered her medicines, her eating, pain, personal care needs, and visitors to determine her comfortable choice. Yet at the same time she needed the security of my experience, skill, and gentle caring to enable her to envision that her decline and dying would not be beyond our control together. She trusted that I would make comfort choices for her when she could no longer do so herself.
The balance of trust and support of the primary nurse with the client and family is another key element of hospice. We had eight or so different in-home aides come to assist with personal care. This was a major weakness in the case, but fortunately I was able to keep up with the supervision in a way that the family could feel secure. Win-win is important to me for the family and the flow of support help, so I took time to get to know the other nuns and give them the needed support and information to feel confident helping with care. The kitchen of the mother house was a delight to visit when we needed to gather for support-smiling sisters, lovely aromas, cookies ready for sampling, and overflowing love for Sister Jeanne.
Sister Jeanne's primary caregiver was physically not able to fulfill the role herself and was nervous about what she might need to be responsible for. Sister Agnes had a strong desire to provide home hospice care as long as possible and unending love for her biological and spiritual sister. That combination became the resource we needed to hold the plan together at the mother house during an amazing 5 days of coma. I saw Sister Agnes grow in strength and resourcefulness. She didn't want to impose on the other nuns, but because she needed to depend on others, it drew the nuns together in giving a final gift to Jeanne.
So hospice is a lifeline of support through an uncharted and sometimes rough part of life's journey. When Sister Jeanne finally left us, everyone was emotionally ready to let her fly away. In fact, I think that the family of caregivers could not have managed another day. And that is hospice as well-enduring with patience and love for a timing that is not ours.