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Wary Or Worry

It happens all the time, I'm wary of sometime and on-call  staffers. They  "think" they know how to care for me. They do not. Even though I'm reassured by the full-time staffer that they will help them.They do not.

So I am being changed, Turning me over onto my side, the on-call nurse doesn't turn me using my hip and shoulder, instead she rests her right hand onto my flank and ribcage. Due to dysarthria, I've lost the ability to speak consonants and rely on caregivers to learn the few words available to me if I'm without my speech generation device (SGD). I tell her "Off" and she takes her hands completely off of me and uses her body to block me from rolling off the bed. The other caregiver doesn't correct her for either move which impedes my ability to breathe.

With ALS, I'm losing muscles daily, as this occurs, others take over. I used to have muscles that lifted my chest, allowing me to breathe, now my belly and neck help me. I'm told that I have the sternocleidomastoid and scalenes (neck muscles) of a bodybuilder.

Back to the turn, by now I'm struggling against her, in an effort to breathe, and she figures I'm irrational and redoubles her effort to control me. Unfortunately, I'm in fight or flight mode and angry. I'm physically impaired, dependent upon the expertise of others, and they, evidently, are not qualified to care for me. Though I'm telling her "Out", she won't acknowledge me and turns me the other direction. Now I have two caregivers who are not protecting my ability to breathe. Why they won't simply cease and desist until I'm understood, I'll never understand.

Instead, I endure despite having my hands placed on my belly and held down, in the name of "protecting my hands". I cannot breathe but, by all means, protect my hands. Then they insist upon sitting me up to be safe. Trouble is I needed arm support to be safe. I think there is a theme here.

The best part of this ordeal must be the nurse who stationed herself in my room to monitor me. She prattled on about making a deal with me, she will stand outside my room if I will agree to not throw myself out of my bed. I hardly know what to laugh at first. She thinks I can speak. She thinks I can move. This is my nurse, not on your life!

I'm sure glad that I have nothing to worry about.
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Location: 2720 E Madison St, Seattle, WA 98112, USA

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