As I grow weaker, procedures and caregivers are not evolving fast enough which threatens my safety and my very life. I've had four incidents over the last month or so which have left me distrustful of many of my caregiver's abilities to give me care without killing me. Of course I do not believe they are out to get me but I do believe if they do not fully understand my particular disease process They WILL make a mistake that will result in my death.
I'm not posting to denigrate the wonderful people who work here. I learned very quickly the giving and caring character of the people who work at Bailey Boushay House. They are the closest thing to angels on this Earth for me, a woman whose body has been ravaged by ALS.
Respiratory is the number one issue. Keeping my airway clear is paramount to my survival. I am aware that one day soon I will succumb to this disease. However, I really really want to live as long as I find joy and purpose in my life.
Repositioning me is the number danger I face. Repositioning me requires a plan executed quickly and efficiently. Paying close attention to my breathing. I cannot stress that emphatically enough!
When I'm not in respiratory distress, my breathe is quiet and regular. I am able to vocalize in my dysphasia-diminished manner. When I'm having difficulty, I huff and puff like an old bear. Vocalization is clipped and sounds angry. (However, the anger is actually fear.) I may opt not to respond what I deem as non-essential questions (not out of malice but to conserve my life energy.) When I'm having escalating or continued difficulty, I yell for all I'm worth. It expends precious energy but I'm in "fight or flight" mode and I'm beyond vocalization and meaningful communication. Telling me to calm down is not productive. If I'm looking "daggers" at an individual, I'm percieving that person as a direct threat to my life. They are making the wrong decisions and harming me.
What can be done to prevent these traumatic episodes? To, indeed, save my life. Be extra vigilant to turn me completely 90-degrees on my side to allow diaphragm expansion. No half or partial turns. They push air out of my lungs. Do not leave me flat on my back. Ever! When this occurs, I AM SUFFOCATING. My tongue is swelling, my head is pounding, my adrenaline is pumping, and all my energy is funneled into making my diaphragm and lungs pull air in and push air out.
I beg of you, Do Not end my life prematurely.
Do not rest your arms nor lean against me. I cannot fully inflate my lungs nor lift my diaphragm. Hold me with both of your hands. One lightly on my shoulder, the other on my hip. Do not ask me non-essential questions. When necessary, form a Yes or No question. Then I'm not forced to expend energy trying to form words when the musculature of my mouth refuses to work. (This is what ALS-induced dysphasia does.)
Please remember that my body is impaired but my brain is not. I'm in here. I love my daughter, my husband, and my family. I've come to love some of my caregivers as friends and some as family. I'm hoping to see my daughter marry and smell the top of my grandchild's head. God willing. God willing. God willing. .
I'm not posting to denigrate the wonderful people who work here. I learned very quickly the giving and caring character of the people who work at Bailey Boushay House. They are the closest thing to angels on this Earth for me, a woman whose body has been ravaged by ALS.
Respiratory is the number one issue. Keeping my airway clear is paramount to my survival. I am aware that one day soon I will succumb to this disease. However, I really really want to live as long as I find joy and purpose in my life.
Repositioning me is the number danger I face. Repositioning me requires a plan executed quickly and efficiently. Paying close attention to my breathing. I cannot stress that emphatically enough!
When I'm not in respiratory distress, my breathe is quiet and regular. I am able to vocalize in my dysphasia-diminished manner. When I'm having difficulty, I huff and puff like an old bear. Vocalization is clipped and sounds angry. (However, the anger is actually fear.) I may opt not to respond what I deem as non-essential questions (not out of malice but to conserve my life energy.) When I'm having escalating or continued difficulty, I yell for all I'm worth. It expends precious energy but I'm in "fight or flight" mode and I'm beyond vocalization and meaningful communication. Telling me to calm down is not productive. If I'm looking "daggers" at an individual, I'm percieving that person as a direct threat to my life. They are making the wrong decisions and harming me.
What can be done to prevent these traumatic episodes? To, indeed, save my life. Be extra vigilant to turn me completely 90-degrees on my side to allow diaphragm expansion. No half or partial turns. They push air out of my lungs. Do not leave me flat on my back. Ever! When this occurs, I AM SUFFOCATING. My tongue is swelling, my head is pounding, my adrenaline is pumping, and all my energy is funneled into making my diaphragm and lungs pull air in and push air out.
I beg of you, Do Not end my life prematurely.
Do not rest your arms nor lean against me. I cannot fully inflate my lungs nor lift my diaphragm. Hold me with both of your hands. One lightly on my shoulder, the other on my hip. Do not ask me non-essential questions. When necessary, form a Yes or No question. Then I'm not forced to expend energy trying to form words when the musculature of my mouth refuses to work. (This is what ALS-induced dysphasia does.)
Please remember that my body is impaired but my brain is not. I'm in here. I love my daughter, my husband, and my family. I've come to love some of my caregivers as friends and some as family. I'm hoping to see my daughter marry and smell the top of my grandchild's head. God willing. God willing. God willing. .
Comments
Post a Comment