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Revolving Door

Interesting experience this night. I couldn't respond to my caregivers when they worried and fussed over me. I could hear them asking me questions but try as I  might, I was powerless to communicate. What's more, I could not move air in and out of my lungs. It was like I was merely a spectator, no longer a participant.

What's more interesting, to me at least, is that I was not filled with terror. It just, was. I wanted to tell them that the bipap was not turned on but was, in fact, further exacerbating the problem. One of my complaints about care in a facility, is that caregivers are ill prepared to care for us, PALS (people with ALS). With staff turn over and the nature of shift work, there are far too many caregivers on rotation to learn how to administer to our specialized needs. And just when they are trained up to give good care, they move on.

In the year and a half  that I've been here, the staff remains ill prepared to effectively attach my bipap mask to my face properly, use the cough assist machine and effectively manage the suction machine, to remove secretions, nor even realize that flat on my back is NOT safe.

But I digress, what I wanted to say was, I was not afraid of death, the thought of dying. It just...was.

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