Last night, 6/3/16, a new-to-the-facility nurse entered my room to administer my night medications via my PEG tube. I tried to tell her to access my PEG by unbuttoning my top; she disregarded my attempts to communicate, reached under my covers, and lifted up my gown. I dissuaded her by vigorously shaking my head, signifying negative to her actions, as well as vocalizing the words, NO and MY TOP, to no avail. She kept arguing her case, which clearly showed me that she was assuming that I was being irrational. I was forced to keep pressing my objection, wasting my precious energy.
In the meantime, a patient care technician (PCT) who understood me better came along; I was able to communicate to undo my gown buttons and expose my PEG to make my intention obvious. Again, she, the nurse advanced on me, yanking up my gown. Again, I had to vigorously fend her off but now I was forced to argue my intention with two caregivers, who assumed irrationality and forced care upon me.
At this point, I need to say that No Means No and to force anything upon me, against my will, is a mental rape, a violation and a breach of trust. I'm left shaking, feeling violated, vulnerable, belittled, nullified, dehumanized, angry, and fearful.
Unfortunately, this episode wasn't over, after detaching the tube from my PEG (without administering the medications), the nurse stated that she would not be coming back to give me my medications; the PCT remained in the room to cluck at me about taking my medications and calm me down. It did not work.
I have paralysis, dysphasia, and dysarthria as a result of having ALS; dysphasia impairs my ability to eat and drink, and dysarthria impairs my speech, reducing it to mumbles and whispers. I rely solely upon the professionalism and abilities of my care team to be able to communicate with me.
This PCT has the irritating habit of bantering on about her interpretation of what she thinks I said, without confirming the veracity of her guesses. For a reason only known to her, she raised the head of my bed all the way to 90-degrees, never a good idea since this compresses my diaphragm on already-weakened muscles. Making it worse, I was slumped down in the bed, further forcing air from my lungs. She misinterpreted my thrashing as an irrational fit of anger and frustration.
My fruitless head-shaking and wordless, soundless screams went unheeded and misinterpreted by two nurses and the PCT who kept reassuring me that they were there, patting my hand, wiping my eyes, nose and mouth. Everything but giving me a fighting chance at breathing.
Luckily, I lived thanks to a single charge nurse, who finally got called, and actually communicated with me and leaned the head of the bed back to 80-degrees, allowing me to catch my breath, Rest my diaphragm, and cry to decompress.
In the meantime, a patient care technician (PCT) who understood me better came along; I was able to communicate to undo my gown buttons and expose my PEG to make my intention obvious. Again, she, the nurse advanced on me, yanking up my gown. Again, I had to vigorously fend her off but now I was forced to argue my intention with two caregivers, who assumed irrationality and forced care upon me.
At this point, I need to say that No Means No and to force anything upon me, against my will, is a mental rape, a violation and a breach of trust. I'm left shaking, feeling violated, vulnerable, belittled, nullified, dehumanized, angry, and fearful.
Unfortunately, this episode wasn't over, after detaching the tube from my PEG (without administering the medications), the nurse stated that she would not be coming back to give me my medications; the PCT remained in the room to cluck at me about taking my medications and calm me down. It did not work.
I have paralysis, dysphasia, and dysarthria as a result of having ALS; dysphasia impairs my ability to eat and drink, and dysarthria impairs my speech, reducing it to mumbles and whispers. I rely solely upon the professionalism and abilities of my care team to be able to communicate with me.
This PCT has the irritating habit of bantering on about her interpretation of what she thinks I said, without confirming the veracity of her guesses. For a reason only known to her, she raised the head of my bed all the way to 90-degrees, never a good idea since this compresses my diaphragm on already-weakened muscles. Making it worse, I was slumped down in the bed, further forcing air from my lungs. She misinterpreted my thrashing as an irrational fit of anger and frustration.
My fruitless head-shaking and wordless, soundless screams went unheeded and misinterpreted by two nurses and the PCT who kept reassuring me that they were there, patting my hand, wiping my eyes, nose and mouth. Everything but giving me a fighting chance at breathing.
Luckily, I lived thanks to a single charge nurse, who finally got called, and actually communicated with me and leaned the head of the bed back to 80-degrees, allowing me to catch my breath, Rest my diaphragm, and cry to decompress.
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