I arrived at the front door of the home of my patient, Tom, and his wife, Sara, for my initial visit. Tom had been battling throat cancer for some time. He was now suffering from a complication of the radiation treatments, so swallowing had become very painful for him. Between the pain and the fungal infection invading his throat, he had made the decision not to eat or drink anything to limit the added pain those activities caused him. The physician has prescribed feedings via a temporary tube placed in his stomach. Tom was frustrated with the stomach tube, the discomfort caused by his medication, the pain that accompanied every attempt to swallow, and the fatigue of the daily trips to the hospital for radiation. Tom was frustrated with everything and everyone. He had already had more than enough – but these new feedings were the last straw. He was tired playing by a rulebook that caused him only pain; his decision to stop eating and drinking – despite all the assurances of the cancer center staff assurances -- was his attempt to re-exert control.
Sara, his wife greeted me enthusiastically at the door with a smile and a sigh of relief, “I hope you can help. Tom is very angry right now and is refusing to come downstairs.” I asked Sara if we could just sit and chat for a few minutes first. She was anxious and handed me the folder they had been given by the cancer center with the lists of medications, treatments and appointments for Tom. “Everything should be right there for you,” she said.
I put the folder aside without opening it and looking at her, asked, “How are you doing, Sara?”
Immediately, her tears flowed and she replied, “It has been so long since anyone has asked me how I was doing. I am not even sure anymore how I am doing. I am trying to do my best for Tom, I really am.”
That simple question encouraged Sara to open up and describe how surprised she was to have anyone inquire about her. Everyone in their circle – doctors, nurses, children, neighbors, church members -- was always asking how Tom was doing. She simply could not recall the last time anyone paused to ask about her. She also spoke about all the ways she was trying to adjust Tom’s diet to make swallowing less painful, and the level of discouragement she felt when nothing seemed to work. She described her inability to ease his anger and frustration, and her secret fear that she was somehow making everything worse. She apologized for sounding selfish and expressed feelings of guilt to even have these thoughts, but she was exhausted, emotionally spent, and on many days she didn’t feel well herself.
I did no more than listen with constant eye contact and hand her tissues. By the end of our few moments together (and that really was all it was), she was smiling and leaned into me and whispered, “He was always a handful to live with. I guess the cancer wasn’t going to change that, huh?” We hugged and I said we would talk more after I visited with Tom.
Each visit after that, Sara and I always made time to talk about how she was doing, what she was missing, what she had enjoyed and would want to do once Tom’s health improved. Over time, I could see that these simple conversations – these small gestures of asking and listening with intent to care – made a significant improvement in Sara’s outlook and ability to cope. By making purposeful caregiver listening part of the home-care visit, I was able to learn a great deal more about the family’s needs than I could have gleaned from any other method of observation. Ernest Hemingway once said that “I have learned a great deal from listening carefully. Most people never listen.”
I agree.
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