The problem is caregivers that leave me on my back too long, don't support my arms when I'm between 45 and 90-degrees and lift the bed legs up. They over challenge my diaphragm and lungs. Gravity pushes down on my diaphragm. (I'm not strong enough to fight against gravity anymore.) Elevating my head without, first, boosting me up in the bed, forces air out of my lungs. Folding me up, or "taco-ing" me, in the bed, by elevating the legs, forces even more air out of my body. Then, when four people stand around looking at me, "waiting for me to my calm down", feels like murder. I cannot get enough oxygen into my body. How long can you survive being "burked"?
They say that new care directions are in place. Indeed, this is noticeable in some of staff and I appreciate the heightened attention to detail. However, there remains individuals who remain unchanged and that is frightening. Particularly, when I get two at the same time. Then, I am forced to speak and repeat, repeat, repeat, and exhaust myself.
It was suggested that I wear my bipap mask during changing events and I agreed to try it. However, my one resource to alert caregivers to my distress, has been my volume. If I'm wearing a bipap mask, nobody can hear me.
I'm a sitting duck.
Now, I'm reconsidering my DNR...
They say that new care directions are in place. Indeed, this is noticeable in some of staff and I appreciate the heightened attention to detail. However, there remains individuals who remain unchanged and that is frightening. Particularly, when I get two at the same time. Then, I am forced to speak and repeat, repeat, repeat, and exhaust myself.
It was suggested that I wear my bipap mask during changing events and I agreed to try it. However, my one resource to alert caregivers to my distress, has been my volume. If I'm wearing a bipap mask, nobody can hear me.
I'm a sitting duck.
Now, I'm reconsidering my DNR...
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