One of the many things that goes hand in hand with being a quadriplegic, even a highly independent one, is that I need PCAs (personal care attendants/ assistants) to come in every morning and help me get ready for the day. It’s just a fact of life that doing what’s necessary to go from the bed to the bathroom to ready to attack the day in my wheelchair takes an effort that’s beyond my physical means. Although it’s one of those things that I’ve learned to accept, by the same token it’s a constant, ongoing frustration because I will always carry with me that outlook of once being able to do things for myself but not being entirely able to do so anymore.
To that notion, for many years after my spinal cord injury I felt like the fact that I needed daily PCA help was one of the biggest secrets of my lifestyle. If friends, extended family, etc. asked me questions about how I get out of bed or things of that nature I always responded vaguely without ever honestly answering the question. Or I would downplay how much assistance I actually needed in the morning. I think it was mostly a pride thing. Adjusting to a lifestyle that suddenly required a considerable amount of help from someone else for a number of hours every morning was challenging. And in many ways I felt like enlightening people to my need for that assistance was a shameful admission that I could no longer care for myself, or that I was lazy.
There were even a few years in the middle of college circa 1999-2000 where I was very angry about it. I spent many nights lying awake in bed staring at the wall really pissed off. It was the cyclical nature of it all that really got to me. I knew that no matter what I said or did someone would still have to come in the morning to help me out. Every day. And worse, I could never take a day off from it. It sucked (Still does honestly).
But as things evolved those extreme frustrations began to stem more from the PCA personnel situation itself. When I lived at home with my parents through college the only home healthcare company was hospital run and they hired the PCAs and sent them out. At first there was a lot of stability with the same two people coming in Monday through Friday and a rotation of regulars on the weekends. But one by one their PCAs left for various reasons. Cut to a few years later and I didn’t know who was coming in to help me until they got there in the morning. One day it was someone I liked and the next it was someone awful. Some were so bad my day was ruined the instant they stepped foot into my room. It was very frustrating.
Not having a say in PCA personnel matters changed when I moved to Minneapolis for law school. I got hooked up with a local PCA company owned by a quadriplegic, which was a huge selling point from my perspective. They send PCAs my way, I do the interviews, and the power to hire the PCAs I want, and control over who enters my home, is in my hands. That’s how it should be.
Still, through it all over the years the adage that good help is hard to find has become highly apropos of my overall PCA situation. They are the people that I heavily rely on to put me in the optimum position to face each day. Thus finding PCAs that are the requisite combination of skilled, competent, punctual, cooperative, diligent, patient, respectful, trustworthy, trainable, knowledgeable of my personal care needs, shows initiative, has a good attitude, follows instructions, has common sense (that’s big with me), etc. can be a tricky proposition. One of the biggest things for me beyond that list of qualifications is awareness of how important it is that each task has to be done correctly or it can set me up for unnecessary challenges later.
When a PCA is good everything runs like a well oiled machine; but when he/she’s bad it’s bad. I’ve had PCAs show up late or not at all, put my shoes on the wrong feet, put my pants on crooked, underwear backwards, leave things I need (e.g. cell phone) out of my reach, ask me to hurry up while I’m on the toilet, talk on their phone during cares, go through the paces like it’s an annoying stepping stone to the rest of their life, and so on. That’s terrible for me. And they don’t last.
To help paint the picture the following is a list of high-, er, lowlights of interesting PCA situations I’ve experienced in the past:
- Plenty have asked to come in at a different time than directed because it “works better with their schedule.”
- One was an hour late because she got pulled over on the way to my place. She would later ask me to back up her lie that her sister was driving if her court caseworker called me so she could get out of the ticket. Nope.
- One used to routinely, unapologetically roll my wheelchair into the wall whenever she moved it away from my bed thinking nothing of it even though she would likely never do that in her home.
- One was very frugal with her latex gloves and thought it was ok leaving them on the whole time, and that washing her hands with them on was a germless supplement for a new pair. It wasn’t.
- One sat in my bedroom and cried because she got a tiny spot of bleach on the black skirt she should have known better to not wear considering the work tasks at hand.
- When I asked one to do something she would repeat my request as a question and then stand there until I acknowledged. For example, Me: “I’ll wear that red shirt.” Her: “You want to wear that red shirt then?” Then she wouldn’t move until I said yes. All morning long. Aggravating much?
- I told one that I wanted a blueberry Pop tart and milk for breakfast. Without skipping a beat she asked what kind of Pop tart. I repeated. Then she immediately asked what I wanted to drink with it. Ten seconds had elapsed.
- I told one to leave my air pump in an obvious place near my hallway to remind me to use it the next day. An hour later I found it in my laundry basket. Not quite what I had in mind.
- One had horrible language. I’m certainly no linguistic prude but asking me what mother f-ing t-shirt I wanted to wear, etc. was too much.
Given more space I could go on and on. Trust me. Truthfully, I do thoroughly appreciate the help PCAs provide me, but that doesn’t discount that needing them can be a big challenge. But in the end all I can do is maintain a positive, patient attitude towards the situation and hope that the good ones far outweigh the bad ones. At the least, it will make for an interesting chapter in my book.