Day in the Life Without Your PCA

I am coming up on my 12th year of using a personal care assistant (PCA), who isn't a personal relative. There are pros and cons to using a PCA in your home on a daily basis, but we all know that extra care to live our daily lives is very much necessary when living with spinal muscular atrophy.

When your PCA doesn't show

We often hear people sharing their advice on how to hire the right help, but what we don’t realize is what happens when we don’t have a backup and our aid does not show.

Like everyone else, most PCAs want a full-time position with decent daytime hours and sometimes that is just not the reality. Many will require nighttime shifts or strange weekend hours as well. But I’m here to sympathize with those who have learned to manage when their PCAs do not show up.

Then how do we manage?

What do we do when they don’t show? Unfortunately, this has been a common reoccurrence for me and though I have been tempted to fire I also have put that on hold until I can find a replacement. Below are my top tips on how to manage without your PCA for the day.

  • Have A Backup plan! Filling this position is often a difficult task and filling a backup position can be even harder.
  • But even when you have a permanent PCA continue interviewing people as a backup!
  • Do pee math! What does it look like when your PCA doesn’t show up? It looks like holding your pee for over 24 hours. Calculating liquid intake if they are not going to be there for a long period is very important as well. We call it pee math. What is a healthy amount of liquid you can drink without having to go to the bathroom frequently?
  • Have prepared snacks and meals, easy to access. Preparing as much as he can ahead of time by having a backup plan for meals whether it be Uber eats, a friend on the street who can pop over, or snacks readily available on your table.

Have the hard conversation

I’ve had to have some hard conversations with my PCAs but I would really recommend you laying out the importance of them showing up to work. Being that they are your aid on a regular basis they should have a pretty good idea of what you need to help you not only live a great life but even just function regularly.

I had the same aid for over three years, but unfortunately, this was still a conversation that needed to be had. I had to paint a picture for her that calling out to go out with a friend without much notice really put me in quite a bind.

Finding ways to make it work

I highly recommend having a backup that lives close by. I know every agency has a different protocol for no-shows and hopefully, they will still send a backup but I have found in my “self-directed” program that is not the case.

I find these ways to make it work because, let’s be honest, we’re pretty good at finding ways to make our life work regardless of the inconveniences.

Know that you’re not alone and many of us have struggled with poor work ethics.

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