Transformational caregiving during hospice
By Ron King
When Jake’s mother was diagnosed with a terminal illness, Jake and his wife Tina’s plans to separate were interrupted.
Just as Jake had found a place to live and was beginning to pack his things, it became clear that his mother could no longer stay in her own house and would require 24-hour care. Tina and Jake decided to put their plans on hold and provide care for Jake’s mother. Both Jake and Tina worked, but they were able to arrange their schedules so that one could always be home. After just 2 weeks on hospice care, Tina was laid off from her job. She then became the primary caregiver for Jake’s mother, Betty.
Tina and Betty always got along well. Betty wasn’t aware that Jake and Tina were about to separate, so Tina and Jake did all they could to provide an appearance of normalcy. Betty was able to convey her blessing on the marriage and wishes that Jake and Betty would enjoy growing old together. Jake watched Tina care for his mother with a compassion and tenderness that he could not. Tina watched Jake make sacrifices in caring for his mother that was not part of Jake’s typical behavior. Together they planned and worked to make each day as comfortable for Betty as possible.
As a chaplain, I was a witness to the love Jake and Tina shared for Betty. I also noted the way Jake and Tina became aware of the burden each carried, doing what they could to lighten the load for each other. The hospice team all noticed and commented on changes they observed in Jake and Tina during the eight months Betty was on hospice care. They both agreed that their values, understanding, priorities, and sensitivity had changed during that time.
We sat together waiting for the funeral director to come to the house.
Through tears shared because Betty was gone, Jake and Tina shared additional tears that they both immediately understood. Jake took Tina’s hands and looked directly into her eyes. He said to her, “Thank you for the way you cared for my mother. As I watched you each day, I remembered why I married you.” They determined with surprising ease that they would continue together and use the strengths they experienced in each other during those eight months to restore their marriage.
We expect end of life care to be focused on the dying patient. Everything is done for their comfort and benefit. When we join forces in caring for others, growing in the attitudes, skills, listening and faith required of us, we sometimes see the best in ourselves and each other. These are often the very qualities needed for us to face our own mortality. This isn’t always the outcome, but the potential always exists. Caring for a loved one is able to build new competencies and connections that have been forgotten or blurred. Or we may become and be able to give part of who we are for the first time.
The transformation of caregivers is one we would not often choose because it always involves loss, uncertainty, and sometimes pain. But life leads us through rites of passage that shape us. Hospice is such a passage. Wisdom answers life’s calling, to the very end.