New people taking care of me has to be the bane of my existence! I am not a good candidate for on-the-job training anymore. At least, not at night nor in a crisis situation. ALS at this stage is extremely taxing on my body. My muscle loss has so accumulated throughout my limbs and torso that minimal bodily functions have the ability to sap my strength and my patience. For example:
Two patient care technicians (PCT's) new-to-me, not their jobs, are assigned to care for me. I need to be prepared to go to bed from my power wheelchair. (There is nobody available with experience in helping me, an ALS patient. Therefore, nothing that transpires is their fault and I bear them no ill will. ) They come in all smiles and good humor (they are adorable) and I am happy to see them.
They know that they have to remove my Tobii alternative and augmentative speech device from my state-of-the-art Permobile power wheelchair. The trouble began with not knowing how to remove the expensive and critically important speech device from the mount. She asks me but I know I am unable to talk her through it. I just sit there and cringe and pray to God that it is not dropped as I doubt insurance will cover another. Prayer answered as they team up and get it clicked onto the stationary stand. (whew) Then they ask me how to remove the mount from the chair. It's incredibly easy but it looks intimidating and I know they won't be able to understand my "accent", I try anyway. They don't get it. Not to be rude, but I cannot take the energy-suck, I was already tired. I drive out into the hallway in search of someone who knows my routine. No dice! No such luck. I try again. They get it and the mount pulls out smoothly. I know lesson has been learned but this is the second time I've had to teach it TODAY.
Next comes disrobing from the waist up while in the wheelchair which I had to verbally communicate (subtract more energy from my imaginary checkbook). Because they are unfamiliar with my wheelchair, I expend yet more energy trying to explain, "turn off chair, lift up the arm troughs, pull me forward, shirt over my head, bra off, also." Bless them, they have cheerful, on-going, self-deprecating banter. They even make me laugh (joyous energy-suck).
Night gown on, "Arms first." Sling lift, "Pull me forward". What color loops do we use? "Purple, purple", meaning back two loops and front two loops. I try to use this as a teaching moment to avoid the question next time. (error) "Purple, purple to the bed. Purple and black to go back." And now I've caused confusion with my accent. (So frustrating! And another energy-suck to boot.)
Now I see that they don't know my sling as they've got one strap threaded through the other, incorrect for this sling. I would just keep my mouth shut if it was purely aesthetic. Unfortunately, I fear it may cause me pain. I've learned the hard way to speak up. I try telling them it's wrong. They think I want it to remain uncrossed. Hell no! That thing will split me like a wishbone!", I think. I have no choice but to try explaining again, let's try it in small bites, "Lift the strap", "The strap, no, the strap", "No, other strap", "Up, no, up!", "Blue strap", "Not middle, I said blue, blue, no, blue", "see the loop? ", "Yeah, through that." Exhausting! I am just done. My reserves are spent and though I look like a petulant child, I make the conscious decision to close my eyes and mouth and withdraw. I have no more to give. I can't even participate anymore.
Thankfully, they have my changing routine down and don't require my input until I'm changed and ready to sit up. Then there's a minimum of how far up?...How many pillows on each side?... How's your call light?... And then I need my Tobii...Another minefield of energy-sapping verbalizations that nobody understands. How many ways can you say the word, "closer"? .
It bears repeating that the caregivers are not really at fault. They help many people with diverse issues. There are only two patients in residence with ALS and we have differing issues from each other. These two caregivers are very competent. In fact, I realize that I'm in error calling them PCT's, one is a registered nurse. They are excellent caregivers. The problem is specialized training, even PCT to PCT from shift to shift. I've been here for two months, my transition period should be over.
Two patient care technicians (PCT's) new-to-me, not their jobs, are assigned to care for me. I need to be prepared to go to bed from my power wheelchair. (There is nobody available with experience in helping me, an ALS patient. Therefore, nothing that transpires is their fault and I bear them no ill will. ) They come in all smiles and good humor (they are adorable) and I am happy to see them.
They know that they have to remove my Tobii alternative and augmentative speech device from my state-of-the-art Permobile power wheelchair. The trouble began with not knowing how to remove the expensive and critically important speech device from the mount. She asks me but I know I am unable to talk her through it. I just sit there and cringe and pray to God that it is not dropped as I doubt insurance will cover another. Prayer answered as they team up and get it clicked onto the stationary stand. (whew) Then they ask me how to remove the mount from the chair. It's incredibly easy but it looks intimidating and I know they won't be able to understand my "accent", I try anyway. They don't get it. Not to be rude, but I cannot take the energy-suck, I was already tired. I drive out into the hallway in search of someone who knows my routine. No dice! No such luck. I try again. They get it and the mount pulls out smoothly. I know lesson has been learned but this is the second time I've had to teach it TODAY.
Next comes disrobing from the waist up while in the wheelchair which I had to verbally communicate (subtract more energy from my imaginary checkbook). Because they are unfamiliar with my wheelchair, I expend yet more energy trying to explain, "turn off chair, lift up the arm troughs, pull me forward, shirt over my head, bra off, also." Bless them, they have cheerful, on-going, self-deprecating banter. They even make me laugh (joyous energy-suck).
Night gown on, "Arms first." Sling lift, "Pull me forward". What color loops do we use? "Purple, purple", meaning back two loops and front two loops. I try to use this as a teaching moment to avoid the question next time. (error) "Purple, purple to the bed. Purple and black to go back." And now I've caused confusion with my accent. (So frustrating! And another energy-suck to boot.)
Now I see that they don't know my sling as they've got one strap threaded through the other, incorrect for this sling. I would just keep my mouth shut if it was purely aesthetic. Unfortunately, I fear it may cause me pain. I've learned the hard way to speak up. I try telling them it's wrong. They think I want it to remain uncrossed. Hell no! That thing will split me like a wishbone!", I think. I have no choice but to try explaining again, let's try it in small bites, "Lift the strap", "The strap, no, the strap", "No, other strap", "Up, no, up!", "Blue strap", "Not middle, I said blue, blue, no, blue", "see the loop? ", "Yeah, through that." Exhausting! I am just done. My reserves are spent and though I look like a petulant child, I make the conscious decision to close my eyes and mouth and withdraw. I have no more to give. I can't even participate anymore.
Thankfully, they have my changing routine down and don't require my input until I'm changed and ready to sit up. Then there's a minimum of how far up?...How many pillows on each side?... How's your call light?... And then I need my Tobii...Another minefield of energy-sapping verbalizations that nobody understands. How many ways can you say the word, "closer"? .
It bears repeating that the caregivers are not really at fault. They help many people with diverse issues. There are only two patients in residence with ALS and we have differing issues from each other. These two caregivers are very competent. In fact, I realize that I'm in error calling them PCT's, one is a registered nurse. They are excellent caregivers. The problem is specialized training, even PCT to PCT from shift to shift. I've been here for two months, my transition period should be over.
Maybe some laminated signs on your door of various instructions that you can point to
ReplyDeleteExcellent idea. I'll get on it although pointing is a ship that sailed long ago. Thank you so much.
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