My ire's been up as of late. My frustration level has been like an overheating radiator on a limping jalopy. Bubbling at the lip, then shooting geyser-like, when one more frustration piles on top.
More and more, I'm losing energy and my ability to speak. At the same time, my best, most intuitive caregivers are leaving, taking with them, valuable tribal knowledge about my care. Knowledge, that I desperately need them to pass on to the people left behind.
Currently, I'm being taxed of my energy because many of my caregivers believe they can just pepper me with questions as they go. Once upon a time, that worked. I can assure you, those days are passed. I need my caregivers to perform like a NASCAR pit crew. Knowing what they need to do and do it quickly and efficiently.
Overshadowing all else, should be the need to preserve my airway and to keep me breathing as comfortably as possible. They must understand that my disease is robbing me of all muscle function, including my diaphragm. When I'm flat on my back, it's like I have a 50-llb weight sitting atop my chest. Breathing is labored but they may not notice. Later in the day and in the evening, it's worse with a seeming 75-lb weight atop my chest. Time on my back MUST be limited. Don't ask if I need to have my head elevated, boost me to the top of the bed, place the neck pillow under my neck, then elevate the head of the bed. If I'm in distress, immediately, roll me completely on my side. Partial turns compress my diaphragm, forcing air out of my lungs (suffocating me).
Please note: the neck pillow, when properly placed at the base of my skull, is an excellent tool to preserve my airway. When improperly placed, it causes neck strain. When not moved with me during changes, it poses an obstacle, wrenching my neck muscles and/or blocking my airway.
Extraneous noise must be minimized. I cannot be relied upon to be able to project my voice loud enough to be heard. Turn off the television or iPad. And consider closing the door to minimize hallway distractions and noise. Also, I don't think "tapping out" caregivers is appropriate. It's disruptive and takes the focus off of me, the patient, during care. Furthermore I've tried to get my caregiver's attention at some of those moments to no avail. They can't hear me over their own discussion.
More about communication: Ask me relevant yes or no questions to help me conserve my energy. Stating a problem, then asking me what to do about it, is not helpful. Critical thinking to solve the problem is a better option or posing yes or no questions to solve the problem. If it's necessary to get a quick answer without the Tobii, try using the alpha-board (hanging on the Tobii). Nobody ever has. To my knowledge, my caregivers have yet to be informed or trained on it's use.
About the Tobii, some of my caregivers don't know what it is. I can say, Tobii, but I cannot explain what it is nor can I point at it. Dare I say, caregivers for dealing with persons with ALS should be aware of our specialized Needs, specifically, our means of communication. It is in the best interests of caregivers of persons with ALS (or PALS) to learn basic Tobii operations and how eyegaze works along with troubleshooting.
More and more, I'm losing energy and my ability to speak. At the same time, my best, most intuitive caregivers are leaving, taking with them, valuable tribal knowledge about my care. Knowledge, that I desperately need them to pass on to the people left behind.
Currently, I'm being taxed of my energy because many of my caregivers believe they can just pepper me with questions as they go. Once upon a time, that worked. I can assure you, those days are passed. I need my caregivers to perform like a NASCAR pit crew. Knowing what they need to do and do it quickly and efficiently.
Overshadowing all else, should be the need to preserve my airway and to keep me breathing as comfortably as possible. They must understand that my disease is robbing me of all muscle function, including my diaphragm. When I'm flat on my back, it's like I have a 50-llb weight sitting atop my chest. Breathing is labored but they may not notice. Later in the day and in the evening, it's worse with a seeming 75-lb weight atop my chest. Time on my back MUST be limited. Don't ask if I need to have my head elevated, boost me to the top of the bed, place the neck pillow under my neck, then elevate the head of the bed. If I'm in distress, immediately, roll me completely on my side. Partial turns compress my diaphragm, forcing air out of my lungs (suffocating me).
Please note: the neck pillow, when properly placed at the base of my skull, is an excellent tool to preserve my airway. When improperly placed, it causes neck strain. When not moved with me during changes, it poses an obstacle, wrenching my neck muscles and/or blocking my airway.
Extraneous noise must be minimized. I cannot be relied upon to be able to project my voice loud enough to be heard. Turn off the television or iPad. And consider closing the door to minimize hallway distractions and noise. Also, I don't think "tapping out" caregivers is appropriate. It's disruptive and takes the focus off of me, the patient, during care. Furthermore I've tried to get my caregiver's attention at some of those moments to no avail. They can't hear me over their own discussion.
More about communication: Ask me relevant yes or no questions to help me conserve my energy. Stating a problem, then asking me what to do about it, is not helpful. Critical thinking to solve the problem is a better option or posing yes or no questions to solve the problem. If it's necessary to get a quick answer without the Tobii, try using the alpha-board (hanging on the Tobii). Nobody ever has. To my knowledge, my caregivers have yet to be informed or trained on it's use.
About the Tobii, some of my caregivers don't know what it is. I can say, Tobii, but I cannot explain what it is nor can I point at it. Dare I say, caregivers for dealing with persons with ALS should be aware of our specialized Needs, specifically, our means of communication. It is in the best interests of caregivers of persons with ALS (or PALS) to learn basic Tobii operations and how eyegaze works along with troubleshooting.
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