It's a big ole bummer not being able to talk intelligibly. It affects my very life, my safety. Once again, if I was not so willful, I would've slipped off into the great beyond. It amazes me that I could be fighting for my breathe in front of three registered nurses and a patient care technician, all very competent and caring, but unable to pick up on visual cues that I cannot breathe properly. Allow me to lay this out for you.
I'm fully dressed in my power wheelchair and it's time to get me ready for bed. It takes two caregivers to safely prepare me and transfer me from chair to bed. My transfer was attempted by a patient care technician (a strong follower) and a registered nurse (unfamiliar with my care). To prepare me for bed, required a change to nightclothes. To remove my shirt and bra, they raised my armrests, as required, and bent me forward to unfasten. I went into trouble quickly. Normally, it's a fast procedure and they concentrate on holding up my torso. Not so, this time.
I began to fight against them to lean back when my torso and neck sagged, simultaneously forcing air out and cutting air intake off. I was told to wait that they were trying (completely missing the bigger issue). I kept trying to verbally communicate, "I can't breathe." the PCT finally made eye contact but did not understand. I tried to save myself by scooting my butt forward on the chair, getting myself in a better position but not completely resolving the breathing issue. About that time, it dawned on her what I said and finally figured out how to tilt my power wheelchair. Trouble is, she acted belatedly, tilting the chair back so I was affected by gravity full force on my chest. Struggling for air again, additional nurses arrived, misjudging my efforts to breathe for a full-fledged tantrum, and stood by waiting for me to "calm down". One does not calm down when one is fighting for one's life.
.Next, same PCT hits the 'recline' rather than 'tilt', enfolding me into the chair. Remember how I had scooted my butt down? Yeah! It crushed me, specifically, my spine. I was pinioned in place and the nurses kept beseeching me to let go off the chair so they could help me. How the Hell was I holding onto the chair?! Absurdity. At last, they took action, pulling me forcibly from the chair. It would have been far kinder to my spine had they reclined the chair first.
Now, I'm nursing a very traumatized and bruised spine. I opted not to go to the hospital since emergency rooms are ill-equipped to handle ALS patients, particularly, ones whose speech is unintelligible. I cried loud and long which is miraculous since I don't have much voice when I'm not under the influence of an adrenaline rush. I promptly "fired" all concerned, cursing and banishing them from my room. Naturally, I forgave. I mean, what choice do you have? Besides, I get it that they prefer to help, not hurt. Now, we go forward, analyzing what happened and how do we handle things in the future?
First issue is based upon my nearly two years experience, nurses are not effective PCT's nor CNAs! Why substitute a nurse for a PCT? It's not safe. I needed two saavy PCT's that knew how to safely move me. Next, anybody working with me, a person with ALS, needs to figure out how to communicate with me. What do I sound like when I say "I can't breathe."? Also, if you're working with me, learn to operate the wheelchair. I cannot teach you and these things can kill or maim in unskilled hands. It could've killed me. No drama. Truth.
Last, give us a break, are we five-year-olds? Yes, some of us end up in diapers, called briefs, and wear bibs, called clothing protectors, but our cognition is intact. We know things, we just can't readily communicate our needs to you.
I'm fully dressed in my power wheelchair and it's time to get me ready for bed. It takes two caregivers to safely prepare me and transfer me from chair to bed. My transfer was attempted by a patient care technician (a strong follower) and a registered nurse (unfamiliar with my care). To prepare me for bed, required a change to nightclothes. To remove my shirt and bra, they raised my armrests, as required, and bent me forward to unfasten. I went into trouble quickly. Normally, it's a fast procedure and they concentrate on holding up my torso. Not so, this time.
I began to fight against them to lean back when my torso and neck sagged, simultaneously forcing air out and cutting air intake off. I was told to wait that they were trying (completely missing the bigger issue). I kept trying to verbally communicate, "I can't breathe." the PCT finally made eye contact but did not understand. I tried to save myself by scooting my butt forward on the chair, getting myself in a better position but not completely resolving the breathing issue. About that time, it dawned on her what I said and finally figured out how to tilt my power wheelchair. Trouble is, she acted belatedly, tilting the chair back so I was affected by gravity full force on my chest. Struggling for air again, additional nurses arrived, misjudging my efforts to breathe for a full-fledged tantrum, and stood by waiting for me to "calm down". One does not calm down when one is fighting for one's life.
.Next, same PCT hits the 'recline' rather than 'tilt', enfolding me into the chair. Remember how I had scooted my butt down? Yeah! It crushed me, specifically, my spine. I was pinioned in place and the nurses kept beseeching me to let go off the chair so they could help me. How the Hell was I holding onto the chair?! Absurdity. At last, they took action, pulling me forcibly from the chair. It would have been far kinder to my spine had they reclined the chair first.
Now, I'm nursing a very traumatized and bruised spine. I opted not to go to the hospital since emergency rooms are ill-equipped to handle ALS patients, particularly, ones whose speech is unintelligible. I cried loud and long which is miraculous since I don't have much voice when I'm not under the influence of an adrenaline rush. I promptly "fired" all concerned, cursing and banishing them from my room. Naturally, I forgave. I mean, what choice do you have? Besides, I get it that they prefer to help, not hurt. Now, we go forward, analyzing what happened and how do we handle things in the future?
First issue is based upon my nearly two years experience, nurses are not effective PCT's nor CNAs! Why substitute a nurse for a PCT? It's not safe. I needed two saavy PCT's that knew how to safely move me. Next, anybody working with me, a person with ALS, needs to figure out how to communicate with me. What do I sound like when I say "I can't breathe."? Also, if you're working with me, learn to operate the wheelchair. I cannot teach you and these things can kill or maim in unskilled hands. It could've killed me. No drama. Truth.
Last, give us a break, are we five-year-olds? Yes, some of us end up in diapers, called briefs, and wear bibs, called clothing protectors, but our cognition is intact. We know things, we just can't readily communicate our needs to you.
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