Taking care of me is no easy task. As a person with ALS who has been made a quadriplegic by the disease, I require a Helluva lot of care. All of my activities of daily living (ADL's) need to be done by others.
Telling somebody this does not begin to quantify the myriad details that must occur to keep me safe, healthy, relatively comfortable, and happy (or is the word engaged). I rely on caregivers to feed, clothe, and medicate me. They change my position in bed and change my soiled briefs. They bathe me, brush my hair, brush my teeth, shave my legs and pits, shampoo my hair, set me up on the commode, apply antibacterial powder under my breasts, make up to my face, and Calazine to my bottom.
Even this level of detail doesn't tell the whole story. They transfer me from bed to power wheelchair and back, from bed to shower chair and back, from bed to shower chair to accessible bathtub and back, again. To accomplish these moves, they must use slings for the built-in lifts. They roll me on my side, paying close attention to where my arms and legs are. They also have to watch head placement and monitor my breathing. They have to know what color loops to use on my sling to keep me upright and able to breathe easy. They have to know how to recline and tilt my wheelchair and how to position me properly in it. They must know how to position my left hand on the goal post controller. They need to know how to mount and attach my Tobii speech device and make sure it is usable.
And still, this doesn't tell the story. They must learn to use machines that keep my diaphragm working that my lungs may process air. Strapping the bipap mask to my face is a challenge. Getting it placed correctly over nose and mouth then holding it in place while, simultaneously, getting the straps over my head without pulling my hair. Let's just say it's left both sides traumatized. The key to success is two well-trained caregivers working in unison. Or one extraordinary one. The same can be said for the caregiver who must work the cough assist and suction machines. Though one has used these on an ALS patient previously, is no guarantee of success on another. We are individuals with widely varied needs and abilities. I, for example, can tolerate three (3) cycles on the cough assist to bring up secretions (folks, that's phlegm and mucus! ) whereas others can only take one at a time. And I cannot tolerate a hard, plastic suction wand. Instead, I need the one made of softer plastic with a retractable sheath otherwise I cannot effectively manuver the wand to extract those secretions. Do you get my meaning? These are, by no means, the whole of our reality.
It's amazing how much help is required to keep me at this level of happy.
Telling somebody this does not begin to quantify the myriad details that must occur to keep me safe, healthy, relatively comfortable, and happy (or is the word engaged). I rely on caregivers to feed, clothe, and medicate me. They change my position in bed and change my soiled briefs. They bathe me, brush my hair, brush my teeth, shave my legs and pits, shampoo my hair, set me up on the commode, apply antibacterial powder under my breasts, make up to my face, and Calazine to my bottom.
Even this level of detail doesn't tell the whole story. They transfer me from bed to power wheelchair and back, from bed to shower chair and back, from bed to shower chair to accessible bathtub and back, again. To accomplish these moves, they must use slings for the built-in lifts. They roll me on my side, paying close attention to where my arms and legs are. They also have to watch head placement and monitor my breathing. They have to know what color loops to use on my sling to keep me upright and able to breathe easy. They have to know how to recline and tilt my wheelchair and how to position me properly in it. They must know how to position my left hand on the goal post controller. They need to know how to mount and attach my Tobii speech device and make sure it is usable.
And still, this doesn't tell the story. They must learn to use machines that keep my diaphragm working that my lungs may process air. Strapping the bipap mask to my face is a challenge. Getting it placed correctly over nose and mouth then holding it in place while, simultaneously, getting the straps over my head without pulling my hair. Let's just say it's left both sides traumatized. The key to success is two well-trained caregivers working in unison. Or one extraordinary one. The same can be said for the caregiver who must work the cough assist and suction machines. Though one has used these on an ALS patient previously, is no guarantee of success on another. We are individuals with widely varied needs and abilities. I, for example, can tolerate three (3) cycles on the cough assist to bring up secretions (folks, that's phlegm and mucus! ) whereas others can only take one at a time. And I cannot tolerate a hard, plastic suction wand. Instead, I need the one made of softer plastic with a retractable sheath otherwise I cannot effectively manuver the wand to extract those secretions. Do you get my meaning? These are, by no means, the whole of our reality.
It's amazing how much help is required to keep me at this level of happy.
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