Skip to main content

Violated

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.
  1. 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.)
  2. 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. 
  3. 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. 
As if all the preceding were not enough, they never rinsed the soap off my face, nor my feet. I have grit between my toes.  My back never got touched and my hoohah...Well, I managed to squirm and move my thighs enough that they decided not to force their hands between my legs. Good thing, I'd hate to have to pile on a sexual molestation charge. Do not touch if I do not want to be touched. Surely, I have that right. Don't I?
Labels:
Location: 2720 E Madison St, Seattle, WA 98112, USA

Comments

Post a Comment

Popular posts from this blog

Lashing Out

Fed up. Sick of hearing, "I'm sorry."  Apologies don't erase the pain you inflict on me. You pull my pubic hair. Your nitrile gloves pull the hair from my head. Not once in a while but day in and day out. You turn me in a manner that suits you rather than in a manner that doesn't stress my body. Why won't you use the pad and sheet to turn me as one unit? Instead, you allow my body to twist as you hold me one-handed. How good you are at your job. What part of "my muscles are dying" don't you understand?
Post a Comment
Read more

Shards Cling To

I just met my new psychologist and I already like her. I would say that it is effortless to talk to her, but talking to anyone through an augmentative and alternative communication (AAC) device takes a great deal of effort. One must think about what to say and drill it down concisely and succinctly, Then attempt to type it out with your eyes on a wonderous, but infuriating machine, and hope you nail the 'Speak' button, and not the 'Cancel' button. You're praying that the device doesn't spontaneously, disengage the eye gaze, leaving you mute and helpless. You're also praying that the calibration holds and your eyes don't tire or dry out. Aside from all of that, she did not overwhelm me with rapid fire questions, nor invade my personal space, by insisting on reading while I'm writing, instead of allowing me to "speak". Those things are huge. Counseling somebody with my disabilities, present unique challenges. I have major physical deficit...
Post a Comment
Read more

Managed

Managed care, do not get me started. It is the bane of my existence and my savior. If quadriplegia has curtailed my activities, and it has, then being in a home has curtailed even more. I've had to dumb it down and set my standards low. Gone, are the halcyon days of getting in my wheelchair to go for a stroll or sit in the sun, or even sit in the sun room. Neither the nurses, nor patient care technicians, know how to put me in my wheelchair. Seriously. My chair has head controls and it is a bafflement. Most caregivers don't even realize I have head controls. First, they hit the left head pad when they lift the armrest which turns the chair on. Next, they sling me over and place me in the chair. The problem? My head, naturally, rests on the headrest, which accelerates and drives the chair and is beyond my control. Running over a caregiver or running myself into an obstruction are very real consequences of their ignorance. What could be worse? The caregivers remain clueless abo...
Post a Comment
Read more