Unreliable narrator
It was such a beautiful spring day today! Imogen had an incredible soccer game this morning in which her team simply clicked into action--it was exciting to witness--the girls were strategically passing to each other and making goal after goal. After the game, we made it through hipster brunch infested Williamsburg, hopped on the L, and moved our way uptown to visit James. We arrived to find him snoozing in his chair.
James awoke when we entered the room and told me that he slept in his chair all night. He added that the physical therapists woke him up in the middle of the night to work with him. I did not want to completely discount his version of events so I replied that it would be unlikely that the therapists would work during the night and that they would not want to keep him in his chair for that length of time. I explained to him that his schedule follows a rather regular routine but that I would check with the nurse regarding his recent treatment. Just at that moment, one of his care attendants arrived and I addressed the question to him. He told me that James was allowed to sleep in today, was only taken out of his bed around 10:30, and had a short morning session with the therapists.
James looks utterly dumbfounded. I gave Imogen a white board pen to draw pictures on James's whiteboard next to the names of his loved ones. James turned on the television to a show about house remodeling. It was loud and uncomfortable in his room and everything felt off. The nurse came by to turn off his antibiotic IV which was sounding a loud beeping warning that the treatment was complete. I could sense that James felt anxious. He asked to be placed into his bed and told me he felt nauseous.
I took Imogen out into the dayroom for family members, turned off James's television, opened the window blinds, and did a load of laundry as the nurses made a decision to place James back into his bed, at his request. He had two hours before the shift was to take place but the head nurse took pity on him. When I returned to his quiet room, he was looking at me with wide eyes.
I asked him if having Imogen in his room made him uncomfortable. He nodded. I agreed that when Imogen visits in the future, she would greet him and then, stay in the dayroom, only returning to say goodbye when it was time to leave. He looked so relieved. I asked if there were any questions that he wanted answered or concerns that he was having. He told me the usual of "this sucks" and "I cannot do this." He looked so worried. I reminded him of the group therapy session we attended the day before and that perhaps, he should do the body scan meditation when he was feeling overwhelmed. He said, "Can we do it together now?"
I quietly lead him through the meditation by speaking the directions softly to him which involves feeling one's breath of air flow through one's nostrils, being aware of one's own face, the air on one's skin, moving down to the neck and shoulders, the chest, and belly down to one's toes and back again. By the time I had returned to his head to breath together deeply, he was asleep.
James only slept for about ten minutes and woke up refreshed. He was having trouble speaking today and asked to write instead. I handed him a pad of paper and he wrote, "How is Imogen's soccer?" I told him about the great game today and mentioned the conversations I had with soccer parents on the field. I reminded him that my birthday is next week and that perhaps, we will celebrate it together with his therapists.
James drew a little portrait of me of down to my waist with my arms crossed and the number 51 in a heart and then wrote, "Jennie - I love you! Sorry to be sick." I brushed my hand through his hair and told him that he had nothing to apologize about! He then drew a series of hearts emanating from my hands and wrote "you take care of me" and then, wrote "Imogen" with the number eleven encircled by a heart.
I told him that Imogen will attend the Japanese cherry blossom festival tomorrow at the Brooklyn Botanical Garden with our friend Alan and his daughter Sylvia. James said, "I want to go!" We have visited the garden every year around Imogen's birthday--it's a tradition. We have taken a portrait of Imogen since she was a baby in a part of the garden that once had a patch of lilies of the valley, her birth flower, but the field was pulled out about two years ago, much to our dismay. We still manage to take a photo every year in the garden. I told James that I would visit him while they were at the garden and he said, "What time will you come tomorrow."
It is terribly difficult to leave him every day at the hospital. He lies in his bed, looking at me and waving. It is a heartbreaker.
James did ask me about Facebook today so reluctantly, I pulled out the laptop and logged on to his site. I think James's ability to maneuver easily around the site is evidence of the degree in which social media becomes hardwired into our brains! He cannot tell time but he knows exactly how to switch screens from his profile to the feed and then, scroll down and punch the "like" button. He was exhausted after only three minutes or so and could not really focus his eyes to read any of it. He had the desire but not the strength or the attention span. I also think he was slightly disturbed by the GoFundMe related reposts on his page. I explained the site to him previously but I do not think he comprehends what it all means.
James has a strange sense of time and it is often reflected in what he shares with me about his experiences at Mt. Sinai. The wrangling with time also effects how he views himself. He felt congestion in his chest and told me that he needed to be suctioned. I took him at his word and we buzzed the nurse. When she arrived, she looked at me and said, "He's totally dry in his throat, he does not need suctioning." I think James was recalling that in the past, the suctioning made him feel better and it was part of having the trach. I felt a little embarrassed for following James's lead when I should know better. He's had a cap on his trach for the past three days. I doubt he's been suctioned in some time.
I do have concerns that the X-ray that he had on Friday was to check for pneumonia which is a known complication from having a tracheostomy because the procedure makes a patient vulnerable. It is hard to gauge what is happening with James because the therapists are not doctors and they often do not know what the overall plan or management of James's health may be. It is slightly frustrating.
It appears there is more than one unreliable narrator!
James awoke when we entered the room and told me that he slept in his chair all night. He added that the physical therapists woke him up in the middle of the night to work with him. I did not want to completely discount his version of events so I replied that it would be unlikely that the therapists would work during the night and that they would not want to keep him in his chair for that length of time. I explained to him that his schedule follows a rather regular routine but that I would check with the nurse regarding his recent treatment. Just at that moment, one of his care attendants arrived and I addressed the question to him. He told me that James was allowed to sleep in today, was only taken out of his bed around 10:30, and had a short morning session with the therapists.
James looks utterly dumbfounded. I gave Imogen a white board pen to draw pictures on James's whiteboard next to the names of his loved ones. James turned on the television to a show about house remodeling. It was loud and uncomfortable in his room and everything felt off. The nurse came by to turn off his antibiotic IV which was sounding a loud beeping warning that the treatment was complete. I could sense that James felt anxious. He asked to be placed into his bed and told me he felt nauseous.
I took Imogen out into the dayroom for family members, turned off James's television, opened the window blinds, and did a load of laundry as the nurses made a decision to place James back into his bed, at his request. He had two hours before the shift was to take place but the head nurse took pity on him. When I returned to his quiet room, he was looking at me with wide eyes.
I asked him if having Imogen in his room made him uncomfortable. He nodded. I agreed that when Imogen visits in the future, she would greet him and then, stay in the dayroom, only returning to say goodbye when it was time to leave. He looked so relieved. I asked if there were any questions that he wanted answered or concerns that he was having. He told me the usual of "this sucks" and "I cannot do this." He looked so worried. I reminded him of the group therapy session we attended the day before and that perhaps, he should do the body scan meditation when he was feeling overwhelmed. He said, "Can we do it together now?"
I quietly lead him through the meditation by speaking the directions softly to him which involves feeling one's breath of air flow through one's nostrils, being aware of one's own face, the air on one's skin, moving down to the neck and shoulders, the chest, and belly down to one's toes and back again. By the time I had returned to his head to breath together deeply, he was asleep.
James only slept for about ten minutes and woke up refreshed. He was having trouble speaking today and asked to write instead. I handed him a pad of paper and he wrote, "How is Imogen's soccer?" I told him about the great game today and mentioned the conversations I had with soccer parents on the field. I reminded him that my birthday is next week and that perhaps, we will celebrate it together with his therapists.
James drew a little portrait of me of down to my waist with my arms crossed and the number 51 in a heart and then wrote, "Jennie - I love you! Sorry to be sick." I brushed my hand through his hair and told him that he had nothing to apologize about! He then drew a series of hearts emanating from my hands and wrote "you take care of me" and then, wrote "Imogen" with the number eleven encircled by a heart.
I told him that Imogen will attend the Japanese cherry blossom festival tomorrow at the Brooklyn Botanical Garden with our friend Alan and his daughter Sylvia. James said, "I want to go!" We have visited the garden every year around Imogen's birthday--it's a tradition. We have taken a portrait of Imogen since she was a baby in a part of the garden that once had a patch of lilies of the valley, her birth flower, but the field was pulled out about two years ago, much to our dismay. We still manage to take a photo every year in the garden. I told James that I would visit him while they were at the garden and he said, "What time will you come tomorrow."
It is terribly difficult to leave him every day at the hospital. He lies in his bed, looking at me and waving. It is a heartbreaker.
James did ask me about Facebook today so reluctantly, I pulled out the laptop and logged on to his site. I think James's ability to maneuver easily around the site is evidence of the degree in which social media becomes hardwired into our brains! He cannot tell time but he knows exactly how to switch screens from his profile to the feed and then, scroll down and punch the "like" button. He was exhausted after only three minutes or so and could not really focus his eyes to read any of it. He had the desire but not the strength or the attention span. I also think he was slightly disturbed by the GoFundMe related reposts on his page. I explained the site to him previously but I do not think he comprehends what it all means.
James has a strange sense of time and it is often reflected in what he shares with me about his experiences at Mt. Sinai. The wrangling with time also effects how he views himself. He felt congestion in his chest and told me that he needed to be suctioned. I took him at his word and we buzzed the nurse. When she arrived, she looked at me and said, "He's totally dry in his throat, he does not need suctioning." I think James was recalling that in the past, the suctioning made him feel better and it was part of having the trach. I felt a little embarrassed for following James's lead when I should know better. He's had a cap on his trach for the past three days. I doubt he's been suctioned in some time.
I do have concerns that the X-ray that he had on Friday was to check for pneumonia which is a known complication from having a tracheostomy because the procedure makes a patient vulnerable. It is hard to gauge what is happening with James because the therapists are not doctors and they often do not know what the overall plan or management of James's health may be. It is slightly frustrating.
It appears there is more than one unreliable narrator!
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