“Frustrating” Chapter 126

The other day I saw a meme and a gentleman said “We have a thousand problems until we are sick, then we only have one.”

I thought about this statement for a while and wondered how true it was. I agree all my thoughts are pretty much gone about; how I got pissed at work, the Tesla that cut me off, gas prices to fill my Tesla, stepping in dog 💩, walking into a fart and seeing some kid laughing about it and so on. I think you get the point.

The truth is, I do care about the things I can’t control. You might think it’s quite the opposite and I would be like the meme, but I am not for everting.

When I received my diagnosis, I did my research on what ALS is and what to expect. I learned about how the motor neurons die and that leads to the loss of function. I read blogs and other sites on heroic people fighting ALS and how frustrating the physical changes are. However, this week I want to discuss other issues that can be very frustrating. The issues that are just a pain in the ass and probably ones you won’t read about.

Let’s begin with nursing from agencies, because this is something almost all PALS deal with. Over the past three years, I have had four (4) Certified Nursing Assistants. CNAs are healthcare professionals who provide basic patient care under the supervision of licensed nurses. But WAIT, back the truck up! Unless my wife Laura is a nurse (she isn’t), where’s the training/supervising coming from? 

There have been three (3) licensed practical nurses (LPN), and these are healthcare professionals who are responsible for basic patient care and comfort. LPNs are essential to the patient experience and work closely with RNs and physicians. We're getting closer, but I’m thinking something is still missing. I can’t quite put my finger on it.

We've also “had” two (2) Registered Nurses who are licensed healthcare professionals who have completed a nursing program and passed a national licensing exam. Winner-winner chicken dinner! Minimum training needed. 

To be fair, anyone who meets a new patient in a home healthcare environment will need some training on who / what the PALS will require for care. That most likely comes from the person (in my case my wife) who is most familiar with the PALS' needs. However, the frustrating part comes in when you have to train someone new time and time again, and the agency still fails to send trained personnel or subs when the primary is off for the day. Doctor Laura (chapter 28 ) can’t do it all. Actually, she and my daughters can. I have had great care from everyone and miss each (almost each) one of them. However, I do miss Emilia and Donna the most.

Communication, or should I say miscommunication, can be frustrating. We use eye blinking and the Tobii to communicate. Training someone new, a missed blink or slow typing can certainly cause frustration. Sometimes I feel like I am blinking faster than a tail light and the person looking at me just stares at me waiting for me to signal. When I finally get my signals straight with my caregivers, they tend to be moving on.

We bought a house because together we were able to maintain it. Before I joined the Army I worked as a general contractor for a few years so I was able to do home repairs. I could even replace the kitchen if Laura stopped saying no! I know why the mechanic’s car is broken down, the plumber’s pipes leak and the carpenter’s walls have holes. The spouse doesn’t trust they will fix it correctly. H-E double hockey sticks we are not all “Tim ‘The Toolman’ Taylor.” Now we have to pay for people to fix simple jobs around the house. Clean gutters, replace gutter guards, drain and check the water heater, replace electrical outlets and other things. This is very frustrating to me and a waste of money having to pay higher prices because we live in Northern Virginia. On the other hand I don’t have to do it and it gets done right the first time.

The garden is another area. As proud as I am to see Laura and my kids maintain the garden. What is frustrating is now we pay for a service to cut the grass to free up time to make sure I’m not leaking, my equipment is charged and my pipes are “unclogged.” I sure do miss getting dirty too.

I have a new perspective on the frustrations of ALS. I not only lose my body, abilities and life to ALS. I lose caregivers and the relationship with them, money and time to do what I want and that’s very frustrating.

Nothing is ever a total loss. Even after a fire we still have our roots. We grow again, sprouting new leaves through the darkness of the ash reaching for the light of God and that is not frustrating at all.

Love and Blessings 

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