I’m not sure why or how it always ends up that we talk about food when we go out to visit my step-dad. We all thought he had dosed off when he yelled “Catfish!” He said it clearly and it was one of the few words I had understood that day. It was also sorrowful. He exclaimed the word, but it also sounded like a moan. It broke my heart.
This has been a long struggle. He has been in the hospital for over a month and we have watched him slowly deteriorate. His multiple health issues are tinged with the beginning and advancing stages of dementia. His inability to swallow without aspirating led to the feeding tube. The feeding tube has led to the most heartbreaking moments. His exclamation of “Catfish!” only seems the most poignant because of the suddenness of it, perhaps. His numerous requests for ice cream are almost as painful. He will try to conspire with you or he will just ask for it simply. It breaks my heart every time.
Some days we go and he sleeps the entire time we are there. Sometimes he is alert and will try to speak. We struggle to decipher what he says and nod and agree when we simply cannot understand. I watch his eyes in these moments. I wonder if what I see is frustration at not being able to communicate or simply confusion in that our answers make no sense in light of his questions. He will put his head back or turn his eyes away from us in what I can only guess is resignation.
My family and I spend several hours a week with him; my mother is there every day. I simply do not understand how she does it. I am beginning to think she handles it by keeping up delusions that he is going to get better, that he will be going home. It seems almost cruel of the doctors not to be blunter. They tell her the prognosis is poor. What does that mean exactly? Does it mean he will improve? Does it mean he is dying? Should we call his kids to come see him quickly?
My cynical side has kicked in over the last few days. I watch my mother walk in and say hello to all the nurses, doctors, techs and staff by name. They are all wonderfully kind and attentive. They can be. This is a brand new hospital with only a handful of patients. They are all wonderful. But, doesn’t it also serve their interest to keep him here connected to all the monitors and tubes? Aren’t they working with the insurance company to make sure he can stay on longer because it fills a bed in a nearly empty hospital?
At what point does this excellent care become cruelty?
I keep asking myself what we are doing here. Are we just making ourselves feel better knowing that everything that can be done is being done? Whose interests are being served? My step-dad’s? His family’s? The hospital’s?
What is cruelty?
Tags: dementia, hosptial care, Parkinson's
“Catfish!”
I’m not sure why or how it always ends up that we talk about food when we go out to visit my step-dad. We all thought he had dosed off when he yelled “Catfish!” He said it clearly and it was one of the few words I had understood that day. It was also sorrowful. He exclaimed the word, but it also sounded like a moan. It broke my heart.
This has been a long struggle. He has been in the hospital for over a month and we have watched him slowly deteriorate. His multiple health issues are tinged with the beginning and advancing stages of dementia. His inability to swallow without aspirating led to the feeding tube. The feeding tube has led to the most heartbreaking moments. His exclamation of “Catfish!” only seems the most poignant because of the suddenness of it, perhaps. His numerous requests for ice cream are almost as painful. He will try to conspire with you or he will just ask for it simply. It breaks my heart every time.
Some days we go and he sleeps the entire time we are there. Sometimes he is alert and will try to speak. We struggle to decipher what he says and nod and agree when we simply cannot understand. I watch his eyes in these moments. I wonder if what I see is frustration at not being able to communicate or simply confusion in that our answers make no sense in light of his questions. He will put his head back or turn his eyes away from us in what I can only guess is resignation.
My family and I spend several hours a week with him; my mother is there every day. I simply do not understand how she does it. I am beginning to think she handles it by keeping up delusions that he is going to get better, that he will be going home. It seems almost cruel of the doctors not to be blunter. They tell her the prognosis is poor. What does that mean exactly? Does it mean he will improve? Does it mean he is dying? Should we call his kids to come see him quickly?
My cynical side has kicked in over the last few days. I watch my mother walk in and say hello to all the nurses, doctors, techs and staff by name. They are all wonderfully kind and attentive. They can be. This is a brand new hospital with only a handful of patients. They are all wonderful. But, doesn’t it also serve their interest to keep him here connected to all the monitors and tubes? Aren’t they working with the insurance company to make sure he can stay on longer because it fills a bed in a nearly empty hospital?
At what point does this excellent care become cruelty?
I keep asking myself what we are doing here. Are we just making ourselves feel better knowing that everything that can be done is being done? Whose interests are being served? My step-dad’s? His family’s? The hospital’s?