How my PCA changed my life
*First I want to note the click-bait-y-ness of the title, it wasn’t intended that way, it’s just that my life really has changed for the better!
Erin with her PCA Megan
Let’s get down to it, shall we? I first met Megan, my PCA (Patient Care Assistant), about 3 years ago in an elevator with a cute, albeit the tiniest dog I’d ever seen. We happened to both get off at the same floor. “Hi I’m Megan!”, she declared. “I work with your neighbors doing home healthcare and I take their dog out.” I was like, “cool so nice to meet you.” In my head, I thought she is so nice I want to be friends with her! And that’s how everything began.
It wasn’t until almost a year later that my original roomies/full-time carers/mom and dad got her number and asked her to come in for an interview. Now, no one in my family had ever done this before so I could tell my parents were a little nervous as was I. But she quickly started talking about how she’d do whatever I needed and even would help with the household chores. I don’t remember exactly what was said in the interview but I remember how excited she was to be potentially working with a young person as her clients were mostly of advanced age. I also remember the connection I felt with her, it was pretty instant.
We said our good byes and all agreed she was the one and we’d start with two days per week, just to dip our toes in and see. I remember having a nightmare before she started: she was Miss. Trunchbull and I was her least favorite student. As soon as my parents would leave, she’d be mean to me. I was legit frightened for the first shift she worked with me. Of course all the fear subsided and I immediately felt relaxed (well not totally) that first day. *I say not totally relaxed because I still had no idea how to act with a PCA, I mean do you tell them what your story is? How much detail does she need? Is she going to warn me before she gets ice from the machine so I don’t cower and almost cry from the noise and startle-factor? How do I tell her to be quieter when scrunching bags? Do I need to communicate what my needs are every second (who knows that?) and let her do whatever? I’ll admit, those things can be tricky. The best antidote to those feelings—speak them out loud to your PCA; I do it all the time, in a kind way, and it’s good for everyone trust me.
It ended up being perfect for my parents to get some time to themselves or help out my bro and sis or do whatever they wanted!
After only a few months, we added another day and as time went on, a fourth day was added. Now my schedule is filled with a routine I desperately missed from not working.
Erin and Megan playing ball in the gym
Megan and I don’t go anywhere outside the building, but we stay in the building which has plenty to do, you should see our lists! From getting the mail to playing around with a ball in the gym to rolling outside to breathe air, there’s lots to do. Not to mention PT activities like balance and OT activities like doing puzzles. She humors me when I have extra good feels and will even have a dance party (literally a PT activity) and film it on my phone. There’s some more personal things like helping me to the bathroom and dressing and other things that I didn’t feel comfortable with right away. (I do think that’s normal though.) It sounds like we do a lot, and it’s true, I even painted and made greeting cards last year to deliver with my holiday card and she helped me do it—a lot of work but really awesome.
So how about the days or times when I’m not doing great, like most of the time lol. She is aware of all my symptoms, and has a mental checklist of which symptoms get a certain solution. Heart rate high? Let’s take a Propanolol. Nauseous? Time for medical marijuana. And so on...
I need help with everything, but especially with chores because—ooof— as you know I am dealing with a lot. Megan does household chores like laundry and the dishes and making meals. This is what my parents do too on the other days or times Megan isn’t there. I am really grateful for that because I enjoy clean things, but I cannot clean them. Big win!!
Ways in which my PCA makes my life better:
She’s my rainbow 🌈 when I get frustrated and need support, she finds the silver lining and cheers me on. So good for mental health!!
She knows when things are bothering me and suggests we talk about it or make a list. I love writing things down but I can’t do it, so she does. It helps so much when I’m overwhelmed especially! Again, a great mental health strategy.
She makes my world bigger than just my family. What I mean by that is my world is so small, due to my circumstances, and she brings a different perspective than my family. We talk about everything: politics, HGTV, my old teaching jobs…nothing is off-limits. She is also hilarious and her stories of everyday life have me rolling consistently.
She gives my parents a break without worrying about me. This is huge since, as I mentioned before, they are my full-time carers. When they get a “break” it is a comfort to know I’m being taken care of, and it also is a great mental health break! (We take mental health real seriously around here!)
All in all, Megan is great! I didn’t think I needed a PCA at first, but accepting my declining situation was necessary. Once she came into our lives, so much became better and I’m so grateful to call her my friend!
Some quick ‘new-to-PCA-lands’ advice:
Don’t assume. Write things down that you need from them, then explain it.
Share your story. This can be right away or come with time. If you’re like me and write internet musings about your disability or chronic illness, give them the link. No promises here that they’ll read it, but mine does and it’s so helpful! It cuts down on explaining things for me, and gives her better insight into what I go through.
Be upfront about household chores they need to help you with. This will be good for all parties in the long run because it’s part of an established routine.
Thanks for reading!