Deep or shallow? Do I go deep within my soul or stay topical, light, and shallow?
La, la, la, I love having access to audiobooks! Although having ALS has left me a quadriplegic and confined to my bed and my hospice room, I take flights of fancy and live alternate realities through the imagination of others.
Then there is my reality which changes daily. I have the mindset that it is what it is, and I have done all that can be done, therefore I shall get on with it and be as happy and healthy as I can be. Take today, a fairly typical day in the life, I've been even keel, status quo. I had a good visit with my husband, no big blow-ups, a bit of mental tug-o-war, as dysfunctional, but loving couples do. Same with my caregivers, no big deals, some capable, others not so much.
This night I request the shower chair which doubles as the commode. I get two of my favorite caregivers, one pretty efficient, the other an eager relative newcomer. I can appreciate the value of training the new people, they pass on the training and gain experience. Good for me in the long run....If I survive.
You know there was an issue. I'm laying there, being rolled left, then right, then they're pulling the straps between my legs. My nether regions fully exposed because I'm fixin' ta sit the throne. They're moving kinda slow relative to the current anticipated speed of my bowels. Hurry up, I beseech them, in my unintelligible speech, inadvertently causing them to pause to determine my need. I silently curse myself, I know better. They fuss about the sling attachments. Is it purple on top and black on the bottom or green? How do I answer that?! Where is the tag that used to hang from the lift ? How do I tell them that a caregiver
never reattached it when the rubber band broke and it floated about my room for a few weeks until it disappeared, while caregiver after caregiver promised to reattach it. How do I convey how mindnumbing it is to be asked day after day, What happened to the tag that used to hang from the lift?! I just want to take a crap!
At last, the sling is raising me off of the bed and...Oh my God, the sling is crooked, not a little crooked, my legs are, clearly, a foot to 18-inches, higher than the other. Consequently, the right side of my face is jammed against the side of the sling. I'm asked, ever so sweetly, if I want to proceed to the commode. I wonder if they have any clue how impossible it would be to position me in this situation, not factor in my discomfort. They lower and reposition me, rerolling me left, then right, then rerouting the straps from between my legs and back, again. Exhausting!
Finally! The sling is up and...I am falling out the bottom! I am improperly positioned in the sling, by professional caregivers, people who are charged with keeping me safe. I cannot even call for help, nor even get their attention. They notice a problem when my butt is too low to clear the commode seat, but they know not why.
I refused to allow them to put me back in bed to readjust. I want the charge nurse to witness this spectacle! It is clear to me that additional training is in order, for safety's sake. The nurse and charge attempt to lift me up onto the commode. Bless them for trying. But it made it worse, the shifting allowed my bottom to slip down farther through the sling. I'm practically folded in half, the sling cutting into the backs of my knees and my middle vertebrae. Don't they know how difficult it is to breathe, with my chest pressed to my thighs; my body could not bend like that when I was healthy! Don't they get that this hurts? I suspect that they just don't know. Many of my muscles meant to aid in breathing have died; I am forced to use my neck and stomach muscles to help move air in and out. My chest doesn't heave; you need muscles and air volume. I have little to none of either.
Further complicating my care, I have dysarthria, a motor speech disorder, involving my lips, tongue, and vocal cords. Thus, I cannot explain the most basic procedure or instruction in real time, allowing caregivers to fend for themselves and draw their own, oft-times incorrect, conclusions. As a consequence, every adult diaper change presents a plethora of problems, including, but not limited to: using colognes, perfumes, sprays, or sanitizers in my room, impairing my breathing; pulling my hair (on my head, pubis, and ass); improper and incomplete removal of all fecal matter; utilizing chemical-laden products on my skin, causing burns and rashes; leaving pressure sore-causing wrinkles in the sheets; wrenching my arms, knees, shoulders, and legs; wrenching my spine; hyperextending my neck; and allowing me to languish on my back too long, leaving me nearly blacked out from carbon dioxide build up.
Those familiar with ALS may be wondering why I'm not combating this build up by wearing my bipap, a machine that moves air in and out of my lungs. Truth is most caregivers cannot properly fit the mask to my face; there is no continuity to the procedure. They bumble about unstrapping the velcro (causing a fit issue for the next use), failing to disconnect airhose from mask (restricting natural airflow prior to activation), trying to pull the mask over my head (affix mask to my face first), and pushing the button to start my autostart machine. Sadly, my bipap mask has been behind my bedside table, in a thick layer of dust, for weeks. Are you inspired to use it?
*******************************
So much for shallow and light. I am able to report that upon sharing this with a trusted and empathetic caregiver, the tag was found and reattached with a zip tie. My bipap mask was also cleaned and I'm back to using it. Now, hopefully the training can be suggested.
La, la, la, I love having access to audiobooks! Although having ALS has left me a quadriplegic and confined to my bed and my hospice room, I take flights of fancy and live alternate realities through the imagination of others.
Then there is my reality which changes daily. I have the mindset that it is what it is, and I have done all that can be done, therefore I shall get on with it and be as happy and healthy as I can be. Take today, a fairly typical day in the life, I've been even keel, status quo. I had a good visit with my husband, no big blow-ups, a bit of mental tug-o-war, as dysfunctional, but loving couples do. Same with my caregivers, no big deals, some capable, others not so much.
This night I request the shower chair which doubles as the commode. I get two of my favorite caregivers, one pretty efficient, the other an eager relative newcomer. I can appreciate the value of training the new people, they pass on the training and gain experience. Good for me in the long run....If I survive.
You know there was an issue. I'm laying there, being rolled left, then right, then they're pulling the straps between my legs. My nether regions fully exposed because I'm fixin' ta sit the throne. They're moving kinda slow relative to the current anticipated speed of my bowels. Hurry up, I beseech them, in my unintelligible speech, inadvertently causing them to pause to determine my need. I silently curse myself, I know better. They fuss about the sling attachments. Is it purple on top and black on the bottom or green? How do I answer that?! Where is the tag that used to hang from the lift ? How do I tell them that a caregiver
never reattached it when the rubber band broke and it floated about my room for a few weeks until it disappeared, while caregiver after caregiver promised to reattach it. How do I convey how mindnumbing it is to be asked day after day, What happened to the tag that used to hang from the lift?! I just want to take a crap!
At last, the sling is raising me off of the bed and...Oh my God, the sling is crooked, not a little crooked, my legs are, clearly, a foot to 18-inches, higher than the other. Consequently, the right side of my face is jammed against the side of the sling. I'm asked, ever so sweetly, if I want to proceed to the commode. I wonder if they have any clue how impossible it would be to position me in this situation, not factor in my discomfort. They lower and reposition me, rerolling me left, then right, then rerouting the straps from between my legs and back, again. Exhausting!
Finally! The sling is up and...I am falling out the bottom! I am improperly positioned in the sling, by professional caregivers, people who are charged with keeping me safe. I cannot even call for help, nor even get their attention. They notice a problem when my butt is too low to clear the commode seat, but they know not why.
I refused to allow them to put me back in bed to readjust. I want the charge nurse to witness this spectacle! It is clear to me that additional training is in order, for safety's sake. The nurse and charge attempt to lift me up onto the commode. Bless them for trying. But it made it worse, the shifting allowed my bottom to slip down farther through the sling. I'm practically folded in half, the sling cutting into the backs of my knees and my middle vertebrae. Don't they know how difficult it is to breathe, with my chest pressed to my thighs; my body could not bend like that when I was healthy! Don't they get that this hurts? I suspect that they just don't know. Many of my muscles meant to aid in breathing have died; I am forced to use my neck and stomach muscles to help move air in and out. My chest doesn't heave; you need muscles and air volume. I have little to none of either.
Further complicating my care, I have dysarthria, a motor speech disorder, involving my lips, tongue, and vocal cords. Thus, I cannot explain the most basic procedure or instruction in real time, allowing caregivers to fend for themselves and draw their own, oft-times incorrect, conclusions. As a consequence, every adult diaper change presents a plethora of problems, including, but not limited to: using colognes, perfumes, sprays, or sanitizers in my room, impairing my breathing; pulling my hair (on my head, pubis, and ass); improper and incomplete removal of all fecal matter; utilizing chemical-laden products on my skin, causing burns and rashes; leaving pressure sore-causing wrinkles in the sheets; wrenching my arms, knees, shoulders, and legs; wrenching my spine; hyperextending my neck; and allowing me to languish on my back too long, leaving me nearly blacked out from carbon dioxide build up.
Those familiar with ALS may be wondering why I'm not combating this build up by wearing my bipap, a machine that moves air in and out of my lungs. Truth is most caregivers cannot properly fit the mask to my face; there is no continuity to the procedure. They bumble about unstrapping the velcro (causing a fit issue for the next use), failing to disconnect airhose from mask (restricting natural airflow prior to activation), trying to pull the mask over my head (affix mask to my face first), and pushing the button to start my autostart machine. Sadly, my bipap mask has been behind my bedside table, in a thick layer of dust, for weeks. Are you inspired to use it?
*******************************
So much for shallow and light. I am able to report that upon sharing this with a trusted and empathetic caregiver, the tag was found and reattached with a zip tie. My bipap mask was also cleaned and I'm back to using it. Now, hopefully the training can be suggested.
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