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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 raised? Do I want them lowered? In my mind, I'm screaming, This again?!  Seriously, you asshat, I can hardly breathe, let alone converse with you! I'm slumped forward, unsupported, my torso is so riddled with atrophied muscles that my rib cage is crushing the air from my belly.

Unfortunately for him, I had a good Tobii night, my eye gaze computer; was able to downshift from fight-or-flight mode; and I was fired-up to report his unacceptable behavior.

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Location: 2720 E Madison St, Seattle, WA 98112, USA

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