Read Online Being Mortal: Medicine and What Matters in the End by Atul Gawande - Free Book Online Page B
Authors: Atul Gawande
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never stopped. He found great purpose in caring for her, and she, likewise, found great meaning in being there for him. The physical presence of each other gave them comfort. He dressed her, bathed her, helped feed her. When they walked, they held hands. At night, they lay in bed in each other’s arms, awake and nestling for a while, before finally drifting off to sleep. Those moments, Felix said, remained among their most cherished. He felt they knew each other, and loved each other, more than at any time in their nearly seventy years together.
One day, however, they had an experience that revealed just how fragile their life had become. Bella developed a cold, causing fluid to accumulate in her ears. An eardrum ruptured. And with that she became totally deaf. That was all it took to sever the thread between them. With her blindness and memory problems, the hearing loss made it impossible for Felix to achieve any kind of communication with her. He tried drawing out letters on the palm of her hand but she couldn’t make them out. Even the simplest matters—getting her dressed, for instance—became a nightmare of confusion for her. Without sensory grounding, she lost track of time of day. She grew severely confused, at times delusional and agitated. He couldn’t take care of her. He became exhausted from stress and lack of sleep.
He didn’t know what to do, but there was a system for such situations. The people at the residence proposed transferring her to a skilled nursing unit—a nursing home floor. He couldn’t bear the thought of it. No, he said. She needed to stay at home with him.
Before the issue was forced, they got a reprieve. Two and a half weeks into the ordeal, Bella’s right eardrum mended and, although the hearing in her left ear was lost permanently, the hearing in her right ear came back.
“Our communication is more difficult,” Felix said. “But at least it is possible.”
I asked what he would do if the hearing in her right ear went again or if there were some other such catastrophe, and he told me he didn’t know. “I’m in dread of what would happen if she becomes too hard for me to care for,” he said. “I try not to think too far ahead. I don’t think about next year. It’s too depressing. I just think about next week.”
It’s the route people the world over take, and that is understandable. But it tends to backfire. Eventually, the crisis they dreaded arrived. They were walking together when, suddenly, Bella fell. He wasn’t sure what had happened. They’d been walking slowly. The ground was flat. He’d had her by the arm. But she went down in a heap and snapped the fibula in both her legs—the long, thin outer bone that runs from knee to ankle. The emergency room doctors had to cast each of her limbs to above the knee. What Felix feared most had happened. Her needs became massively more than he could handle. Bella was forced to move to the nursing home floor, where she could have round-the-clock aides and nurses looking after her.
You might think that this would have been a relief for both Bella and Felix, lifting all kinds of burdens of physical care from them. But the experience was more complicated than that. On the one hand, the staff members were nothing but professional. They took over most of the tasks Felix had long managed so laboriously—the bathing, toileting, dressing, and all the other routine needs of a person who has become severely disabled. They freed him to spend his time as he wished, whether with Bella or on his own. But for all the staff members’ efforts, Felix and Bella could find their presence exasperating. Some tended to Bella more as a patient than as a person. She had a certain way she liked her hair brushed, for instance, but no one asked or figured it out. Felix had worked out the best method to cut up her food so she could swallow it without difficulty, how to position her so she was most comfortable, how to dress her the way she preferred.
One day, however, they had an experience that revealed just how fragile their life had become. Bella developed a cold, causing fluid to accumulate in her ears. An eardrum ruptured. And with that she became totally deaf. That was all it took to sever the thread between them. With her blindness and memory problems, the hearing loss made it impossible for Felix to achieve any kind of communication with her. He tried drawing out letters on the palm of her hand but she couldn’t make them out. Even the simplest matters—getting her dressed, for instance—became a nightmare of confusion for her. Without sensory grounding, she lost track of time of day. She grew severely confused, at times delusional and agitated. He couldn’t take care of her. He became exhausted from stress and lack of sleep.
He didn’t know what to do, but there was a system for such situations. The people at the residence proposed transferring her to a skilled nursing unit—a nursing home floor. He couldn’t bear the thought of it. No, he said. She needed to stay at home with him.
Before the issue was forced, they got a reprieve. Two and a half weeks into the ordeal, Bella’s right eardrum mended and, although the hearing in her left ear was lost permanently, the hearing in her right ear came back.
“Our communication is more difficult,” Felix said. “But at least it is possible.”
I asked what he would do if the hearing in her right ear went again or if there were some other such catastrophe, and he told me he didn’t know. “I’m in dread of what would happen if she becomes too hard for me to care for,” he said. “I try not to think too far ahead. I don’t think about next year. It’s too depressing. I just think about next week.”
It’s the route people the world over take, and that is understandable. But it tends to backfire. Eventually, the crisis they dreaded arrived. They were walking together when, suddenly, Bella fell. He wasn’t sure what had happened. They’d been walking slowly. The ground was flat. He’d had her by the arm. But she went down in a heap and snapped the fibula in both her legs—the long, thin outer bone that runs from knee to ankle. The emergency room doctors had to cast each of her limbs to above the knee. What Felix feared most had happened. Her needs became massively more than he could handle. Bella was forced to move to the nursing home floor, where she could have round-the-clock aides and nurses looking after her.
You might think that this would have been a relief for both Bella and Felix, lifting all kinds of burdens of physical care from them. But the experience was more complicated than that. On the one hand, the staff members were nothing but professional. They took over most of the tasks Felix had long managed so laboriously—the bathing, toileting, dressing, and all the other routine needs of a person who has become severely disabled. They freed him to spend his time as he wished, whether with Bella or on his own. But for all the staff members’ efforts, Felix and Bella could find their presence exasperating. Some tended to Bella more as a patient than as a person. She had a certain way she liked her hair brushed, for instance, but no one asked or figured it out. Felix had worked out the best method to cut up her food so she could swallow it without difficulty, how to position her so she was most comfortable, how to dress her the way she preferred.
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