What do you call a quadriplegic lying on the floor? Matt. What do you call a quadriplegic in the water? Bob. What do you call a quadriplegic leaning against the wall? Ilene. And if she is Chinese? Irene. I learned these jokes somewhere around the fourth grade. I often wonder now how anyone could find them funny. There is nothing humorous about being a “Quad”
Hear the story of Mr. Tucker. Tall and obviously once handsome in a rough way, Mr. Tucker’s face shows signs of toughness with perhaps a softer side underneath. I never heard about the circumstances surrounding his gunshot wound. That had happened ten years before I first took care of him and the story had been lost, along with the other remnants of his previous life, in his endless wandering through hospitals and long-term care facilities. Now his life is spent entirely in bed. When awake, his head nods up and down in concert with his breathing. When you get his attention, he can look at you for just an instant. He cannot respond to his name or any questions. Tears frequently run down his face. Sometimes he appears to laugh at jokes the nurses tell to each other while in his room. Perhaps he has thoughts. Perhaps he is aware of his surroundings, but it is impossible to know for sure. His right arm is folded up on his chest. If you pull it down and out about a foot, which is as far as it will go, he can pull it back up to his chest. That is the full extent of his ability to move his body. He lies in the bed, his trach forever hooked to a ventilator, a feeding pump pumping tube feeds directly into his stomach day and night. He has a large ulcer on his sacrum and smaller wounds elsewhere on his body. His belly is round like a beach ball and lies unnaturally on his middle aged frame. He comes regularly to the ICU to be treated for infections and pneumonias. Blood pressure drips, antibiotics and fluids hang on his IV pole. Who is looking after him? Why do they keep him like this? “Someone somewhere must be getting a check,” says the tech cynically. One instantly feels condemned for thinking in this way, even if there is sometimes truth in it. Is it Mr. Tucker’s mother who comes to visit him? She does not talk to anyone and sits quietly for an hour or so. When she thinks no one is listening she may say a few words to him. Who will say to her that she is keeping him alive only to suffer? It will not be me. I would not dream of it. Who then will speak for him? What would he really want?
Mr. Tucker’s care is simple. He needs to have his lungs suctioned frequently because of thick mucous buildup in his lungs, he needs to have his IV medicines administered and he needs to be bathed and to have his wound dressings changed once a shift. Wound care on this type of patient is generally done towards the end of the shift as a courtesy to the oncoming staff. If the wound care has been done early, the next shift will also be obliged to do it at the beginning of their shift. Doing it later allows the next nurse to take care of it at her convenience. The tech and I flip Mr. Tucker on to his stomach and I begin to take down his dressing. Mucous pours out of his mouth and his oxygen levels drop. He is getting sicker. I suction him again and turn the oxygen up to 100% on the ventilator. I pull out the old, foul smelling, yellow and greenish tinged gauze, apply an enzyme to dead tissue in the wound, wet a fresh piece of gauze with saline solution, wring it out and then tuck it into the wound going into the pockets between skin and flesh. An absorbent pad is placed on top and taped down. We change the sheets and bring him again to lie on his back. I suction again and wait for his oxygen levels to stabilize before turning the ventilator settings back to where they were. The tech is gone now. I look at Mr. Tucker. He looks so miserable. I say to him truthfully, “I do not think it will be much longer Mr. Tucker.” Tears stream down his face. His nodding becomes a little more pronounced. Does he hear me? Does he understand what I am telling him? I pause a moment more. I will never know the answer.
At the age of 19 John came from his home in the northwest to visit his father. He had gone one night to a party. He had had a lot to drink and could not remember the night’s events. The next day he began to feel tingling in his hands and feet. When he awoke the next day he could not move. He told his father when he came to get him up, but his father thought he was faking and went to work. He returned to find his son as he had left him and decided he would take him to the hospital – the next morning. By then it was too late to administer the anti-inflammatory medications that would, most likely, have prevented any permanent injury. John had now become known as “the new quad in room 8.” His mother had come to be with him. He could not speak as he was now dependent on a ventilator for breathing, but she could read his gestures and his lips and gave him a voice that he otherwise would not have had. His father also came frequently. He tried not to show the weight of the burden of guilt he would now carry. John’s mother did not fight with him or show any anger towards him. She made plans to bring him home. She would have to get the front porch redone to make it wheelchair accessible. She struggled with insurance companies to get them to pay for the flight he needed back to their state. She struggled to find a skilled care facility near her home that would take him in the interim. John became angry with her when she left the room.
John must have fallen badly. Someone who had been at the party must have known what had happened, but no one was talking. A man a little younger than John’s father came to visit him. He went in the room to speak with him, but John just glared at him, I wondered to myself if John thought this man knew what had happened. He came out of the room a little shaken and turned to me. “He looks like he’s really angry with me. I don’t know what’s going on,” he said. I replied that it was pretty hard for a person to be in the situation John was in. The man contemplated my words for a moment, “He’s totally fucked!” he said. Taken aback, I did not say anything more. The visitor seemed satisfied that he had done what he could and left shortly thereafter.
John stayed in our unit for a month or two before the flight was finally arranged. During that time it was arranged that his girlfriend would come to see him. As her arrival approached everyone focused on the progress he had made. John’s father shaved his face so he would look his best for her. He seemed happy at the thought of seeing her. Shortly before her entrance he became sullen. Some things are impossible. In honor of her visit John left his room for the first time since his injury. It was John in the bed being pushed down the hallway by his nurse and a tech. His girlfriend walked next to him holding his hand. His mother walked on the other side of the bed. The, respiratory therapist pushed the ventilator. Alas, what can be said about such a sight?