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

Fall

Orange, gold, rust, burnt sienna, ochre, raw umber; the riot of fall colors, in the trees and at our booted feet; a drive in the countryside; the taste of hot apple cider on my lips; the satisfaction of a truckload of firewood we gathered and cut ourselves; elk herds on the move; hearty stews, savory soup, crusty whole-grain bread, pumpkin and gingerbread spice lattes; these are the memories I tap into the most this time of year. Cabela's fliers in the mailbox; Carhart's camo-clad hunters swarm outlying areas; mushroom garthering; huckleberry picking; logger burgers; forest service roads; cheese sandwiches on the woodstove; warm quilts, cool sheets, and flannel nightgowns; cold butt, warm heart.  Immensely grateful to have the well of memories to draw upon.
Post a Comment
Read more

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

On-the-job Sass

I continue getting sass from one particular caregiver. He says, "You need to communicate with us." he continues to completely miss or dismiss the concept of I would if I could . It is part and parcel to having ALS, I am losing my ability to communicate and it is his job to assist me. Part of helping me, like it or not, is to learn my routine and anticipate needs, when possible. He misses the fact that I'm failing more every day and night time is when I'm weakest. It is extremely insensitive and arrogant to expect me to cater to his needs and expectations. Pushing me to repeat words or expound on a simple one word suggestion is physically taxing on my system, adding stress which further depletes me. Cuing is supposed to be caregiver's domain, not the patient's. Here is the situation, I am being changed. In the midst of the action, as seems to be his practice, he is sidelined asking me trivial, meaningless, but energy-sapping questions. Do I want my legs raise...
Post a Comment
Read more