I have been violated. Again. My trust betrayed. Again.
This time, I was in the shower, talk about vulnerable! I have late-stage ALS, if I may borrow the terminology. ALS is not measured in stages, to my knowledge, and I've made it my business to learn all things ALS, for the past four years. ALS has taken away virtually everything a person can do, and almost everything I am. I'm quadriplegic. And I've lost the ability to speak.
The greatest loss has to be speech. Because even though I have the best available speech generation device, which allows me to use my eyes to type, I no longer have the energy to get my point across to caregivers in time to do any good. I even lack the energy to communicate with the management to report abuse.
Back to the shower incident. I'm so happy to be getting a shower. I figure I'm going to get a good one because one caregiver was a former shower aide, and she has showered me before. Furthermore, she is going to teach another how to shower me.
All was copacetic, until I tried to get the aide to rinse my arm. My muscles seize and cramp when they get cold and she was neglecting my left arm. I kept saying "arm", "arm", "arm". She kept guessing wrong then quickly gave up, rolled her eyes, and instructed the other one to just ignore me and finish the shower.
They completely disregarded even my safety! They allowed my neck to fall backwards and hyperextend, and both of my arms were left to dangle, and pull down my diaphragm. This combination is no big thing for a healthy body but torturous on me. I am not exaggerating when I say that I struggled for every breath! My tears were dismissed and my distress ignored. Worse, I was mocked and laughed at.
My "go to" words when things are falling apart, are "out" which I mean, "asshole" which I, generally, do not mean, but they recognize, and should interpret as "There is a problem!". Despite repeatedly saying "out" which really should have clued them in to getting a suitable replacement aide or the charge nurse. They ignored my repeated entreaties. She even said "No, I'm not leaving." Laughing and telling the other patient care technician how I call her asshole all the time and to watch out, I bite, and I'm mad at her.
This time, I was in the shower, talk about vulnerable! I have late-stage ALS, if I may borrow the terminology. ALS is not measured in stages, to my knowledge, and I've made it my business to learn all things ALS, for the past four years. ALS has taken away virtually everything a person can do, and almost everything I am. I'm quadriplegic. And I've lost the ability to speak.
The greatest loss has to be speech. Because even though I have the best available speech generation device, which allows me to use my eyes to type, I no longer have the energy to get my point across to caregivers in time to do any good. I even lack the energy to communicate with the management to report abuse.
Back to the shower incident. I'm so happy to be getting a shower. I figure I'm going to get a good one because one caregiver was a former shower aide, and she has showered me before. Furthermore, she is going to teach another how to shower me.
All was copacetic, until I tried to get the aide to rinse my arm. My muscles seize and cramp when they get cold and she was neglecting my left arm. I kept saying "arm", "arm", "arm". She kept guessing wrong then quickly gave up, rolled her eyes, and instructed the other one to just ignore me and finish the shower.
They completely disregarded even my safety! They allowed my neck to fall backwards and hyperextend, and both of my arms were left to dangle, and pull down my diaphragm. This combination is no big thing for a healthy body but torturous on me. I am not exaggerating when I say that I struggled for every breath! My tears were dismissed and my distress ignored. Worse, I was mocked and laughed at.
My "go to" words when things are falling apart, are "out" which I mean, "asshole" which I, generally, do not mean, but they recognize, and should interpret as "There is a problem!". Despite repeatedly saying "out" which really should have clued them in to getting a suitable replacement aide or the charge nurse. They ignored my repeated entreaties. She even said "No, I'm not leaving." Laughing and telling the other patient care technician how I call her asshole all the time and to watch out, I bite, and I'm mad at her.
- I do not call her asshole all the time. I have used the word, "asshole" in the attempt to gain her attention to correct a problem. (And I am always sheepish and embarrassed after the fact.)
- I do not bite. I have bitten (accidentally) my husband and Javier (PCT) while being fed when my jaw spasmodically clenched. I'm not above threatening to bite.
- You bet your ass, I was angry. To be belittled and mocked and not be able to call out for help. To have to fight for air for an extended period of time, when I rely on them to keep me safe.
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