Tuesday, August 30, 2016

A Mere Lump of Humanity?

I sat at my desk on a Monday morning and perused the telecare reports from the weekend:

  • The patient needs a refill on meds.
  • I need to talk to a social worker. 
  • When will they remove the equipment? 
  • I colored three pictures today. 

Without looking, I knew that the last call belonged to Jimmy.

Jimmy was the first patient that I met as a hospice chaplain, and as I reflect on those years, he is definitely the most memorable patient that I met as a hospice chaplain. The memory of our first encounter is emblazoned on my mind: the nurse, the social worker, and I ascend the stairway to the second floor of a bleak motel to Jimmy’s room, his permanent residence. Jimmy greets us in a black Homer Simpson t-shirt and shiny red shorts, eyeing me suspiciously. As we cross the threshold we are hit with a fog bank of cigarette smoke. Jimmy says few words, usually in broken sentences and non-sequiturs, while our social worker in her most gentle voice attempts to explain his medication to him and how to call hospice from his cell phone. He nods his assents but looks thoroughly confused. This is not the first time this exchange has taken place, nor will it be the last.

This was one of the few times I ever saw Jimmy, even though he was on our service for several months. He was extremely uncomfortable around men and thus all of the hospice staff who attended to him were women. Jimmy’s story is filled with mystery, sadness, and profound isolation, yet his last months of life revealed glimmers of belonging, hope, and even a childlike contentment.

We were never able to identify a single one of Jimmy’s relatives, and he never spoke of his family or his past. He had no known friends, to the extent that we had to list his motel manager as his primary care giver. The source of his fear of men was unknown, though clearly traumatic. We could only speculate that in his life he had been hurt, physically and emotionally, by men. Some of his nurses spoke of him as a man-child, as his emotional intelligence was at the maturity level of perhaps an 8 year old boy. We conjectured that Jimmy had undergone severe emotional trauma at an early age, and though his body had continued to grow into that of a man, his mental and emotional capacity had frozen at that age. Others wondered if he was autistic, as he rarely made eye contact, spoke in monotone, and had limited facial movement. In the eyes of some outsiders he would have been a mere lump of humanity, misunderstood, anonymous, discarded, dying in an out-of-the-way motel.

But to our team, Jimmy became a son. During the 4 months that he was with us, we spoke of him more frequently than any other patient, often with a kind of fascinated laughter. He brought out the maternal instincts in our nurses and home health aides, who not only cared for his routine medical needs but also bought him a toaster and a small refrigerator and regularly brought him his eclectic lunch of choice, a vanilla milkshake and a fish sandwich. Nothing brought Jimmy as much joy as his toaster, the first he had ever owned. He had a phone conversation with his nurse Donna the day after receiving this gift:

Donna: Hi Jimmy, whatcha doing?
Jimmy: Eating toast.
Donna: How many pieces have you had so far today?
Jimmy: Six.

Our team secretary posted on her cubicle wall one of the many pictures he had filled in, from his Sesame Street coloring book. Jimmy treated the hospice phone number more as a friendship network than an emergency hotline, and he quickly became a hospice celebrity. Most if not all of our telecare nurses and patient care secretaries were well acquainted with him, whose calls ranged from genuine medical concerns to how many pictures he colored in an evening. Our records showed that he called telecare over 300 times.

During the course of our time with Jimmy, he became more friendly and open. He began to learn that it's possible to trust people, and I think he even slowly began to realize that he was loved. Likewise, we were also changed. His childlike simplicity humbled us. His authenticity and his unabashed willingness to express his needs challenged us.

That May we lost Jimmy. I had the opportunity to lead an informal memorial service, which was more of an occasion for storytelling and laughter than it was for a ritualized service. The table in front of the room was adorned with the standard flowers and a candle, but also with a basket of the toys he had been given and a picture that had been taken on his last birthday. The picture even betrayed a slight smile on Jimmy’s face.

At this gathering Jimmy’s parents were not present, but there was the man from his bank, the one man that Jimmy had trusted over the years, and his nurse Sam that had loved him like her own son. She was the one who taught him what a hug was, and though at first he was extremely uncomfortable with this display of affection, by the end he would not let her leave until she hugged him. There were no brothers and sisters, but there was his doctor and social worker and team manager and secretary and chaplain, who all spoke of him fondly. There were no lifelong friends, but there were new friends who would remember him all their lives long.

It is not mere sentimentality to say that our team and others around him became Jimmy’s family during his last days. One of the hospice commitments is that parents and families come first, but this was one occasion in which those two groups beautifully intersected, and when we lost a patient we also lost a beloved family member.