Skip to main content

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.
Labels:
Location: 2720 E Madison St, Seattle, WA 98112, USA

Comments

Post a Comment

Popular posts from this blog

I Remember...

I remember catching fireflies,  putting them in a jar, as a girl of five. I picked pears off a tree that overhung an alleyway on my route home from school, then enjoyed the forbidden fruit. .I had a golden cat who chased a gray mouse through our living room sending my mother, 3-year old sister, and me screaming atop the sofa and chairs. We lived in a farmhouse and I watched Romper Room. A daddy longlegs skittered across my dirty kid legs as I teeter-tottered on a broken kitchen chair back. I played grocery store and laid out a bedroll for group nap time in preschool. We lived in an apartment attached to a bakery. My maternal grandparents visited and a photo was snapped. Grandma held Dawn and Grandpa held me. I held Grandpa's chin. Walking through the back of the flour-caked kitchen, I saw scrumptious pastries and colorful toys stuck in the cupcakes with my hungry kids eyes. We lived in a two-story apartment building next door to a large farmer's field.  That field was my...
3 comments
Read more

Shards Cling To

I just met my new psychologist and I already like her. I would say that it is effortless to talk to her, but talking to anyone through an augmentative and alternative communication (AAC) device takes a great deal of effort. One must think about what to say and drill it down concisely and succinctly, Then attempt to type it out with your eyes on a wonderous, but infuriating machine, and hope you nail the 'Speak' button, and not the 'Cancel' button. You're praying that the device doesn't spontaneously, disengage the eye gaze, leaving you mute and helpless. You're also praying that the calibration holds and your eyes don't tire or dry out. Aside from all of that, she did not overwhelm me with rapid fire questions, nor invade my personal space, by insisting on reading while I'm writing, instead of allowing me to "speak". Those things are huge. Counseling somebody with my disabilities, present unique challenges. I have major physical deficit...
Post a Comment
Read more

Managed

Managed care, do not get me started. It is the bane of my existence and my savior. If quadriplegia has curtailed my activities, and it has, then being in a home has curtailed even more. I've had to dumb it down and set my standards low. Gone, are the halcyon days of getting in my wheelchair to go for a stroll or sit in the sun, or even sit in the sun room. Neither the nurses, nor patient care technicians, know how to put me in my wheelchair. Seriously. My chair has head controls and it is a bafflement. Most caregivers don't even realize I have head controls. First, they hit the left head pad when they lift the armrest which turns the chair on. Next, they sling me over and place me in the chair. The problem? My head, naturally, rests on the headrest, which accelerates and drives the chair and is beyond my control. Running over a caregiver or running myself into an obstruction are very real consequences of their ignorance. What could be worse? The caregivers remain clueless abo...
Post a Comment
Read more