John was a young man admitted to hospice secondary to end stage lung cancer. He was a stubborn man and a frightened child within himself who loved baseball, loved his wife and hated Cancer! He had been a free-spirit most of his adult life; living here and there, ultimately settling in Florida with his wife. And then the unthinkable happened, he was diagnosed with end stage Cancer. He had been through chemotherapy, radiation, alternative healing and continually had declined leaving his once able body now weak from both the cancer and the treatments.
I was John’s third social worker from Hospice! He just didn’t like social workers it seemed, and he particularly didn’t like talking about his disease; hospice, dying and death.He most certainly did not like talking about or being “talked to” about end of life issues! Once he figured out that he could pretty much fire his social workers at will, he had no problems doing that. As soon as they started to talk, he would look at them from his bed; glance at his wife, and say, “I would like to ask you to leave and not come back.” He had stopped saying why; stopped engaging in debates, he would just ask that they leave, roll his eyes, then roll over and pretend to go to sleep! His wife would stand wearily and walk the social worker to the door, say good-bye. She would quicly return to his bed and find him agitated, sitting upright, telling her how he disliked social workers and all they seemed to do is tell him how he should be feeling anyway! He would usually go on to say he was tired of hospice, and all “those” people telling him he was going to die. His wife was tired, but she was always supportive of his decisions and tried to always be agreeable. She knew that there were not many decisions that he felt he could really make anymore, so she let him make as many as he could. She understood that he was trying to maintain some semblance of control in his life.
Those facing life threatening diseases often express the feelings of not having control; needing to feel like they can still make decisions and have a sense of control in their world. His wife was smart to recognize this in her husband, very wise indeed! Along came social worker number three, and that would be me! I arrived with the nurse, knowing that would at least grant me one visit, as she hadn’t been fired yet. John and she seemed to have a pretty good relationship to date. I thought if I came in under her wing, I might have an easier go with John and his loyal wife.
I liked John immediately! We talked about baseball; a subject that I have very little knowledge of, but was interested in his animation and his love for the sport. He talked about firing social workers, a seemingly enjoyable pastime of his, one that I secretly got a kick out of hearing about. I told him that I was an Eastern Band Cherokee of Virginia and an old social worker to boot. I listened as he talked more about him and his life. I watched the interactions between he and his nurse, he and his wife. I listened for the many things that were and were not said. It was a wonderful visit and it ended with my asking if I could return. Believe it or not, he, and he wife, said “yes”. Returning the next week John had much to talk about. He talked about his life, his family, and more about his beloved baseball.
John shared with me his loved of crab cakes, that he and his wife used to go to the beach and eat seafood when he was well and when they had money. Before this “damn cancer” came into their lives. Quickly, the subject changed and we talked about their wedding, spirituality and then Native American beliefs. He asked me to return next week. He seemed to wear out from all the conversations and said, “As much as I hate it, I think I need a nap!”
The next visit I found John still in bed, he seemed to be declining quickly. He knew that he was weaker, but he still found strength for a thoroughly gruff greeting. “Hello Indian Woman”, he said with a smile! “I am so glad to see you”. I sat beside the bed, noticing his wife, looking tired as she lay beside him stroking his hair. They both told me they had a rough few days, but hoped that it was temporary. John shared that they had been talking about dying and what it would be like. They both hoped that it would be peaceful, but ” not like you hear about”. He didn’t want harps playing and all that stuff he said. I couldn’t help it; I just had to laugh when he told me that, he was such a character, that man. He could certainly turn a phrase. He made me laugh, often. John wanted to feel better so that he could eat crab cakes again, just one more time. He figured if he had to die, he hoped it would be like hitting a home run; that it would be a grand event when he left this world, go out with a bang, and that his wife would know that he was OK.
Imagine, here we were, John, his wife, and the social worker… talking about dying and death; on his terms and in his time. We made a plan together; if John rallied we were going to the beach for crab cakes, my treat. We made a plan! John did rally, he was able to do the work he and his wife needed to prepare for his impending death. We worked our plan, with the patients’ direction I secured a wheelchair; assisted in getting John dressed and together we managed to get him into a SUV. At the restaurant they had dined in for years, and got a table oceanfront. There we had the best crab cakes John his wife and I had ever eaten! A day filled with memories and blessings.
As hospice workers, we understand the importance of “meeting patients and families where they are” in the process, understanding that this is their journey, not our agenda. By doing that we can enhance their care, journey with them along the way allowing the patient and family to control as much as they want/need. It is about life, about living each moment and that is why hospice is cares and is ready to embrace those we are privileged to care for.
Sherry E. Showalter, Ph.D., L.C.S.W., a National Heart of Hospice recipient for psycho-social-spiritual care-giving, has been a long time advocate for patients and families coping with loss, dying and bereavement. She proudly served with other first responders at the Pentagon during 9/11 and continues to work with those coping with sudden and traumatic losses. Most Recently published in The American Journal of Hospice and Palliative Medicine on “Compassion Fatigue” her most requested keynote, she is the author of Healing Heartaches, Stories of Loss and Life, National speaker, and psychotherapist living in Florida enjoying magnificent sunsets on the Gulf of Mexico. Sherry often says, “I am continually amazed at the resiliency of the human spirit. Indeed, Every Day Is A Gift.” Sherry E. Showalter, Ph.D