Living La Vida Loca (Saturday Writing Essential)

Filed in Gather Writing Essential by on September 30, 2013 0 Comments

While I was considering what to write for this prompt, the song “Rambling Rose” kept running through my head. Most of what I write is rambling, or maybe what I write are ramblings. Or both.

I’m still living that crazy life … four days at my son’s house, three at my house, working full time, running the ferret shelter and the ferret club and doing the calendar for Mensa and the newsletter for the ferret club.

Yes, I’m nuts.

Interspersed among all those activities are what I think of as events that make my head explode. It’s not pretty, but so far, just like that mercury-like robot in the Terminator, I keep reforming.

The head exploding events of late have been associated with the home health care aides, the agency that schedules said aides and my son (for those of you who don’t know, he is 34 years old and was in an accident 3/12 that paralyzed him from the chest down).

The latest event occurred something like this:

I took a 3-day vacation 300 miles away from my son after stressing over placing sick ferrets with foster home, scheduling people to take care of the dog, cat and the other ferrets staying behind, scheduling the time with the state caseworker so we would have money for extra hours to have the aides come when I would normally be there, scheduling with the home health aide agency that they would have the aides come, etc.

I got a call from my son on the Friday, telling me that the 8am aide didn’t show up, the overnight aide had to leave, so they got him out of bed and into his wheelchair — naked with no shower. He sat like that for SIX hours until my ex got home from work and went over to take care of him.

That was head explosion #1

The agency “just couldn’t find anyone” and “was trying to fill the shift”, etc. Naturally, it put a bit of a pall on my vacation, wondering and worrying about my poor kid sitting there naked in his wheelchair (they did give him a towel). He can’t transfer in/out of the chair, so if he had a bowel accident, it would be horrible. He hates not having a shower, having dirty hair, etc.

Someone finally showed up around 3pm or so. The rest of the time went okay.

Aaron can’t do much of what he used to do. The one hobby that has survived was target shooting. He can barely lift the gun (just a little 22 caliber) but he can go to the gun range and shoot little paper targets. He lives out in the country where everyone hunts and goes to the gun range. This is a normal part of life there.

Halfway through the week, the one aide quit because Aaron bought a new 22. Her comment was, “What if he got a temper and I did something he didn’t like and he decided to shoot me?”

The thing was, he had carefully asked the aide if she was okay with taking him to the gun shop to buy a gun. He impressed on her that they didn’t have to do it if she was uncomfortable. He asked her several times and she insisted it was okay. He asked her if she was okay with him screwing on the plastic guards he’d printed on his 3-d printer. He said, “If you aren’t comfortable with it, it’s okay, I don’t have to do it right now.”

At no point was he handling the gun (a small rifle, really) with the bullets in. He took the safety class, he even has a permit, and he is very conscientious about gun safety. Whenever he would do anything with it, the gun was at least partially disassembled with the chamber open. And all he was doing was attaching plastic guards so he wouldn’t scuff the gun up at the range (since he can’t hold it up to shoot and must rest it on something).

Having the aide quit really was a mess, because it left a big hole in his schedule and the agency was scrambling to fill the hours.

So that was head explosion #2.

Then Friday rolled around again. This time, the overnight just left Aaron asleep in bed. Alone, in the trailer. He called me around 9:30 saying there was no one there. He can’t get out of bed. If there was a fire, he’d have to just lay there and die. My #1 reason for having aides was so he would not be left alone in bed with no way to get out if there was a fire.

The agency said the person called off at the last second. We’re not entirely sure we believe her, since she’s done and said things in the past that led us to believe she was no stranger to lying.

All in all, they left him alone in bed, with no food or water (after having been in bed since 9pm the night before), no way to cath himself (that’s how he pees), and no recourse if there was a fire (beyond calling the fire department and waiting the 16 minutes it takes them to get there). Trailers are said to become fully involved within minutes. Aaron quoted something about having 14 seconds to get out. I don’t know if it’s that short a time, but I know it’s short. There have been several deaths of handicapped people due to trailer fires since Aaron’s accident. I sort of notice those things more now.

That was head explosion #3

I had been told recently that when there are breaks in the coverage, I’m supposed to tell Aaron’s state caseworker. So I did. They called back right away and said that was not okay, and they were going to talk to them. I didn’t really realize just *how* not okay it was. They apparently got a royal chewing out. I had my suspicions that they were filing for and getting paid for all the hours available — whether they actually had aides there or not! That is the only explanation for what happened next.

Next thing I knew, the agency filed 3 “Incident Reports” against my son, saying he’d done all sorts of things. Some of the things did happen. He did argue with the one aide because the guy was insisting on using a zip tie to tie a wire to Aaron’s bed by looping it around the frame and to the side rail (which would have made it impossible for Aaron to raise the head of his bed. He did tease the one aide (he mistakenly thought she was his friend and understood he was joking). But the rest of it was truly amazing.

The aide who took him to the gun store said he told her he wanted to go to the tool store to buy tools. That he put the gun in his mouth and was waving it all around. That he pointed it at her. That all his guns were loaded (he does not store them loaded). There were some other things, but those were the most horrifying.

That was head explosion #4. That was a big one.

I was livid. Aaron was angry and scared and depressed. He said he felt like he was in prison and wasn’t allowed to do or say anything.

Then I talked to the PPO (the agency that works with the caseworker). That lady said that allegations like that could make him lose his Waiver program (state money to pay for home health aides). We would be dead in the water. I would have to quit my job.

That was head explosion #5. That was pretty big, too. That’s when the constant stomach ache started.

Then I wrote to the PPO. I told her I felt those incident reports were retaliation for reporting that he’d been left alone. I explained that the trailer was built in 1976, had the original wiring, and when you turned the vacuum on, the lights dimmed. It’s not safe to be left alone in bed with no way to save yourself.

She wrote back that if it were her, she would choose to move him somewhere safer.

That was explosion #6, 7, 8 and 9. All in quick succession.

I’m sure I’ve been that angry at some point in my life, but not in recent memory. I literally sputtered while I read that email. Choose? CHOOSE?! As if we hadn’t spent the last 1.5 years trying to get him the @#$# out of there and into a place closer to where I lived. As if I *enjoyed* driving an hour back and forth (1.5 hours from work to his house). As if we had the money to be able to just choose to move him and never thought of that. Aaaarrrrrg. Oh. My. God.

The after-shocks turned the constant stomach ache into a day-long panic attack. I was terrified he would lose his funding. I was furious that the people who are supposed to help him get the funding to remodel the house he’s supposed to move into seem to think we were choosing to stay in an unsafe trailer. It had nothing to do with the fact that it’s been about a year since we filed for the funds and there has been no word from the state (and between the sequester and the government shutting down, may never be at this rate).

Sputter, sputter, spit, spit, sputter. <<insert sound of head exploding>>

I called the caseworker and asked if I should get a lawyer. He said no, that wasn’t necessary. I told him I felt the incident reports were retaliation and he said he agreed. That actually made me feel a lot better.

But what to do about aides who just downright lie? Some of it I’m pretty sure was prompted by the someone at the agency. How do you combat something like that? Video! So we purchased a surveillance system. Now I will know if he’s waving guns around (not bloody likely). I will have proof what he has or has not done. I will also have proof if that one aide decides to get pissy again and yank his pants off so hard that he nearly pulls Aaron out of his wheelchair. But that’s a whole ‘nother story.

[This is in response to the SatWE prompt "Can You Follow Directions?": Please make sure you have a title followed by (Saturday Writing Essential) and try to make sure your capitalization is correct.]

About the Author ()

I'm a middle-aged grandma who rides an 1400cc Suzuki motorcycle. I run a ferret shelter and a ferret club, and I'm way too busy.

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