Life Assist

1Overwhelming frustration, It is what I feel regarding life preserving efforts on me. ☹ As a person with ALS, I have respiratory issues. As a woman who loves her life, and doggedly clings to it, I employ the use of the cough assist and suction machines to expectorate and remove secretions, when necessary.  (That is a sanitized way to say machines suck snot from my throat and mouth so I can breathe. Gross, huh?) ALS ain't pretty.

I am in my fourth year living with ALS and I feel the progression of the disease. Okay, I probably have made that pronouncement before: when my fingers triggered, froze, then failed; when it crawled up and stilled my right, then left arm; when I stumbled and fell, then went from cane, to walker, to wheelchair; when I was forced to use an adult diaper; when I was forced into a nursing home; when I was demoted to advanced dysphagia diet; when my neck weakened; when it became necessary to sleep sitting up; when I almost died of respiratory failure November 2014.

So, my rant this day has to do with recurring situations with not being able to rely on my caregivers to administer the cough assist and suction machines proficiently. Instead, I get bumbled efforts, excuses, and apologies, oh, and promises to do better in the future. Well, I need that NOW.

Witness this: I'm feeling the beginning of a mucus plug (a solid blockage made up of mucus material). I activate the call light and the patient care technician (PCT) arrives. I type, I need the cough assist and suctioning. Nurse now. The PCT slowly wanders off saying she will find somebody. (Giving my urgent situation no more emphasis than a routine diaper change.) 

Next, I get the geriatric nurse, who is clearly past needing to retire, who babbles on with her back toward me, while she washes her hands, then she turns and says she is going to find a second person, and leaves me alone. She brings in the newest nurse, who is orienting, and the newby approaches me, without turning on, either, the cough assist, nor the suction machines and, furthermore, is holding the mask upside down. (Strikes one, two, and three! I manage to throw her out, with a weak but insistent, Out!)

A second set of nurses arrive, one is the charge nurse, so I'm hopeful. Again, nothing. They don't turn on either machine, nor do anything helpful, save for telling me to calm down and hold my hand, while patiently, telling me how I'm making it so much worse for myself by crying and being upset. Can I just say how much I detest being told that you are helping me when, clearly, you are not?! 

Thank you God for allowing me to self-resolve when others have botched it. Apparently, doctors are not the only ones practicing medicine. Here is where I talk myself down off of my high horse. Be kind. Be kind. And be kind some more. Nursing is a tough job. I'm lucky to be here. I'm lucky they love me so much, despite my foul moods and occasional foul mouth. I am loved. And I love them.

Ultimately, we had another teaching moment.