I Remember Joy

This is an excerpt from my 'work in progress'... "Chapters of Goodbyes"... stories of my experiences while I was a Hospice nurse.

People often asked me if it was depressing working with and caring for the dying. My 'standard' reply would be while the reason hospice was needed is sad, it was gratifying that hospice could offer invaluable comfort and help both to the patient and the family. My 'end of the day' honest reply, though, would have to be “Yes ... it can be very depressing at times.” I only worked with a half dozen children during my hospice days and for me they were the toughest and most challenging experiences I ever encountered.

I met Joy early on in my hospice career. She was sixteen years old and in the end stages of liver cancer. It is unusual for someone so young to have liver cancer ... I was told hers was most likely related to drug use. I can only assume she had had hepatitis; it seemed a moot point to discuss the how and whys at this point.

The liver continuously filters blood that circulates through the body; it performs many other important functions, such as removing toxins and other chemical waste products from the blood. Because all the blood in the body must pass through it, the liver is unusually accessible to cancer cells traveling in the bloodstream. Screening for early detection of primary liver cancer is not performed routinely. Any liver cancer is difficult to cure. Primary liver cancer is rarely detectable early, when it is most treatable. Secondary or metastatic liver cancer is hard to treat because it has already spread. Also, the liver's complex network of blood vessels and bile ducts makes surgery difficult.

Advanced liver cancer has no standard curative treatment. Chemotherapy and low-dose radiation may control the cancer's spread and ease pain, however these are of little benefit in this type of cancer. Most patients receive strong painkilling medication along with drugs to relieve nausea and swelling or to improve appetite.

When Joy was admitted to hospice, she was confined to a bed in her parent’s bedroom; it was a queen size water bed that would hopefully give her some relief due to the great pressure of her swollen abdomen and lying only on her back. Liver cancer is ugly … her abdomen had become so distended with fluid that Joy looked to be ten months pregnant. Her skin was jaundice; it had the look of yellowed, rough, dry leather. She could have been a poster child for a concentration camp. Her arms and legs were emaciated; only her face was full from the steroid use to help ease her unimaginable pain.

I would be less than truthful if I said that I was comfortable when I was in her presence; I was not. I had children of my own close to her age. She could be very difficult. In retrospect, given the same circumstances, I might give you an entirely new definition of ‘difficult.’ She would hide behind an invisible wall, determined not to allow her fears to show. She was argumentative and her moods were extremely variable … in that way I suppose she was a typical teenager … but this situation was anything but typical, she was dying.

Joy’s mother was understandably quite protective of Joy and wanted everything that could be done for Joy to be done. This is one area of hospice care that differs from adult hospice patients. The young can change quickly; they could respond quickly to different medications; thus the physicians of our younger patients wanted to be informed of any changes promptly. But in the end the only thing that any of us could do was to keep Joy as comfortable as possible.

The principal of Joy’s high school made arrangements with the family to have a special ‘graduation’ ceremony in the home for Joy. What should have been a ‘joyous’ occasion was rather quiet; a cap and gown were worn, albeit just resting on her body as she was propped up for photos. Her mother had attempted putting some make-up on Joy’s face, rather than glamorous it looked clownish. What saved the day were some dear friends of Joy’s … teenagers her age, laughing, mugging for the camera, being teenagers … ignoring her appearance, reminding her of what a teacher had said or what had happened following a football game. For a few minutes, they were all kids enjoying a special time together.

It took several visits before Joy allowed herself to come from behind that invisible wall in front of me. She preferred another nurse, who was on vacation at the time. I was finally allowed to talk with Joy alone in the room. I say allowed because it seemed if she didn’t want to talk, her mother made excuses that we (the nurses) should not bother her. There was one visit that I will always remember; it was seeing this young woman-child clutching a small teddy bear closely. She was softer, sweeter, sadder and very quiet. I asked if I could talk to her and she nodded her head, still holding the little bear under one arm. I told her about giving teddy bears to my patients when I worked in a hospital. She sighed, shifting her weight, unable to get in a comfortable position. She told me that she wanted to plan her own funeral … her directness took me off guard. Perhaps for the first time Joy looked at me directly in my eyes and asked me if everyone is scared of dying. I hesitated, now was not the time to be evasive. I told her most people told me that they didn’t fear dying; it was a fear of pain or worry about their loved ones being left behind. She rested her head back on the pillow … “uh-uh … that’s about it.”

Joy had a white gelding that she had ridden since she was eight years old. This old gentle giant actually tried to look into the bedroom windows. He seemed to know that Joy was in there and could not come out to see him. Joy almost laughed when she looked out and saw the horse’s ears barely visible above the windowsill. Joy’s father and stepfather worked together to build a ramp leading into the back screened-in porch. The two men then led the horse up the ramp, into the kitchen and finally into the bedroom next to Joy’s bed. She was able to reach up and touch his nose; the animal instinctively knew she couldn’t raise herself any further, so he lowered his head and stood silently as she ran her hand over his head. It was the most beautiful act of love between a human and an animal. This huge horse standing so still in the middle of a bedroom; it was almost unbelievable.

Joy did plan her own funeral; she wrote a very touching and honest eulogy that was read by her younger brother. She chose songs that were obviously more popular with other teenagers, but there wasn’t a dry eye in the church when the country western song “Daddy’s Hands” by Holly Dunn played. The church was filled with young people; many walked up the aisle to say a few words about Joy. Her father stood side by side with her mother and stepfather. There was a photo of Joy taken before she was ill … she had been a beautiful dark-haired young woman with a twinkle in her eyes. There was so much promise in those eyes … too soon gone.

Several weeks following Joy’s death, I received a call from Joy’s mother asking me to drop by the house when I was out that way. When I got there, Joy’s mother greeted me with the same teddy bear that Joy had held on that one visit. She handed me a note and said, “Joy couldn’t write this herself, but she told me what to write.” In the short message, Joy said she wanted me to have the bear ... “give it away if you choose, but please name it Joy to remember me.” My special little bear, Joy, sits on an old iron bed in a ‘bear room’ in Colorado.

I remember Joy.