Many years ago, I was caring for a patient who was dying with cancer. For the purpose of this article, I will call him Andy. Over the time that I cared for Andy, we had to find ways to fill his time.
At first, we let him fold pillowcases and washcloths, and brought him small items like radios and other gadgets to repair, but as he became weaker, I found videos for him that included documentaries of sea life, books on tape, and various types of music to listen to. He developed lots of new interests in those last months of life. He would often tell me all about how far whales could swim and the amazing and beautiful sounds they made.
As Andy slipped into a coma, I found a young coworker of his would visit regularly. He would never speak, just stand at the foot of the bed, hands awkwardly grasping the footboard. I began to incorporate this young man into Andyís care. I talked to him about Andyís favorite videos or music, and would turn them on when I was in the room, even though Andy wasnít alert anymore. We became quite accustomed to watching the whale documentary, since that had been Andyís favorite. But the young man never said much, just stood gripping the footboard, white knuckled.
In the morning, when I would do morning care, I would bring lotion and massage Andyís feet and legs, doing passive range of motion. As I massaged Andyís feet, I explained that Andyís skin would get very dry, and that his legs would get stiff from lying still. I told the young man how Andy had grown to like foot rubs and that we would often joke about Andyís newfound love of pedicures. I always made a point of talking to Andy while I performed my tasks.
Then one morning, I walked past the room, and the young man was sitting at the foot of the bed, gently rubbing Andyís feet, telling him about his day. Gradually, that young man became more relaxed with Andy, and seemed less sad and helpless during his visits.
Sometimes, itís a woman banging her small fist on the nurseís station, demanding immediate service. Sometimes, itís a young man standing at the foot of the bed watching a friend die. Perhaps itís the 10 family members who hover in a circle around the bed, but ring the call button for the nurse when the patient needs a sip of water from the cup sitting at the bedside. They are all powerless in the face of cancer. They are all afraid. They just express it differently.
We can assume that families donít want to help or that they are merely demanding. Or we can choose to find a way to incorporate them into the care. When we teach them in a way that enhances their comfort with everyday tasks, we not only empower them, but help them to communicate, achieve closure, and express affection for their loved ones. Maybe those 10 family members need to know that it is OK to give the patient a sip of water if his head is elevated, that he wonít break if they touch him.
In the current economic climate, we may also be giving them skills that will help them take care of their loved ones at home if the need arises. Of course, not every family or culture is such that providing hands-on care is desired or acceptable. Whether it is a hug, a foot rub, bathing, feeding, or sitting on the bed holding hands, we can and should help families and friends find their ease in the unfamiliar terrain that is the medical world.