My chief challenge right now is mouth management. That is not a euphemism for not swearing, though a few caregivers may argue that. I'm talking about the very things that healthy people never even think about; the lubrication of mucosal linings and mucus evacuation.
ALS has blessed me with an overabundance of mucus, otherwise known as secretions, and has taken away the ability to manage that abundance. A healthy body just clears it away by salivating then spitting or swallowing. I've lost control of my tongue, along with air pressure, thus I cannot spit nor swallow properly and must create work-arounds.
My ALS doctor, actually the pulmonologist, prescribed two machines; the suction machine to remove secretions from the mouth and throat, and the cough-assist which brings secretions back up from my esophagus and trachea (windpipe). Both of which can be very traumatic. There is nothing quite comparable to having a hard plastic wand rammed down the gullet, or into the soft palate, no matter how well-meaning the caregiver.
I take medications to dry secretions that overwhelm my system and try to choke me. It works really well, too well. It sucks all moisture out of my system, creating extreme dry mouth, difficulty peeing, and constipation. Lending credence to the old adage If it's not one thing, it's three.
Hydration -- at this stage, I take in water two ways, bolus through my peg tube and via mouth swab, a real trickle down deal. Begin at the top of mouth, working back to front, swipe a clean, wet swab high above the molars, sweeping past the front teeth. Sweeping high above the gums releases liquid without added pressure that breaks down gums. Alternate left and right until patient is hydrated. If patient is allowing water to run out again. It is likely a flushing manuver to get rid of mucus or food. Now we are on to mucus removal. Proper hydration begins with mucus removal.
Swipe the bottom, below the gumline, to release the water. The water will likely need changing. Clear roof of my mouth from mucus. Using a dry swab, starting back and pulling forward. If you get a significant glob, by all means, throw out the disposable swab. Proceed with the wet swab, covering the entire roof. Behind the teeth, mucus loves my teeth. It seems to travel down from the roof of my mouth, piling up against, and encasing my teeth. I need a few swipes, back to front to remove loose, new mucus. And a more concentrated effort behind the front four teeth.
Behind the bottom teeth, under the tongue, is a whole new gig. I collect a toxic stew of mucus, food, and whatever detritus that filters down. Well, maybe toxic isn't the word since I haven't died from it. But it is disgusting! I need my caregiver to sweep left to right with a scooping motion. One direction, smooth, unbroken motion. I realize this is an advanced move. Hence, the title of this class, Mouth Management 201, not 101. Help a girl out, hey!
Fun and games aside, I really get frustrated by the caregivers who think I'm wasting their time by the increase in the frequency of calls. I really do need hydration and mucus removal. You better believe I wish that I were able to do this for myself. And the ones who deem it necessary to time limit me as if I'm unimportant in the grand scheme. Breathing is important last time I checked. Clearing mucus from the airway rates. Keeping my mucosal linings hydrated so I don't gag or choke is important. The penalty for a lapse is only MY DEATH.
ALS has blessed me with an overabundance of mucus, otherwise known as secretions, and has taken away the ability to manage that abundance. A healthy body just clears it away by salivating then spitting or swallowing. I've lost control of my tongue, along with air pressure, thus I cannot spit nor swallow properly and must create work-arounds.
My ALS doctor, actually the pulmonologist, prescribed two machines; the suction machine to remove secretions from the mouth and throat, and the cough-assist which brings secretions back up from my esophagus and trachea (windpipe). Both of which can be very traumatic. There is nothing quite comparable to having a hard plastic wand rammed down the gullet, or into the soft palate, no matter how well-meaning the caregiver.
I take medications to dry secretions that overwhelm my system and try to choke me. It works really well, too well. It sucks all moisture out of my system, creating extreme dry mouth, difficulty peeing, and constipation. Lending credence to the old adage If it's not one thing, it's three.
Hydration -- at this stage, I take in water two ways, bolus through my peg tube and via mouth swab, a real trickle down deal. Begin at the top of mouth, working back to front, swipe a clean, wet swab high above the molars, sweeping past the front teeth. Sweeping high above the gums releases liquid without added pressure that breaks down gums. Alternate left and right until patient is hydrated. If patient is allowing water to run out again. It is likely a flushing manuver to get rid of mucus or food. Now we are on to mucus removal. Proper hydration begins with mucus removal.
Swipe the bottom, below the gumline, to release the water. The water will likely need changing. Clear roof of my mouth from mucus. Using a dry swab, starting back and pulling forward. If you get a significant glob, by all means, throw out the disposable swab. Proceed with the wet swab, covering the entire roof. Behind the teeth, mucus loves my teeth. It seems to travel down from the roof of my mouth, piling up against, and encasing my teeth. I need a few swipes, back to front to remove loose, new mucus. And a more concentrated effort behind the front four teeth.
Behind the bottom teeth, under the tongue, is a whole new gig. I collect a toxic stew of mucus, food, and whatever detritus that filters down. Well, maybe toxic isn't the word since I haven't died from it. But it is disgusting! I need my caregiver to sweep left to right with a scooping motion. One direction, smooth, unbroken motion. I realize this is an advanced move. Hence, the title of this class, Mouth Management 201, not 101. Help a girl out, hey!
Fun and games aside, I really get frustrated by the caregivers who think I'm wasting their time by the increase in the frequency of calls. I really do need hydration and mucus removal. You better believe I wish that I were able to do this for myself. And the ones who deem it necessary to time limit me as if I'm unimportant in the grand scheme. Breathing is important last time I checked. Clearing mucus from the airway rates. Keeping my mucosal linings hydrated so I don't gag or choke is important. The penalty for a lapse is only MY DEATH.
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