I’ve been thinking about writing this post for a while, but I wasn’t sure whether or not I actually wanted to post it. I share a lot about living with a disability, but this is a bit more of a peek behind the curtain of some of the day-to-day struggles. It’s something that I’m currently dealing with, and I decided that it’s important enough that I can’t not write about it.

I’ve mentioned before that I have caregivers/aides that help me when I’m at home. Things like getting out of bed, showering, using the bathroom, getting dressed… these are all things that I can’t do alone, so I rely on other people’s help. I’ve mostly adjusted to the psychological aspect of needing help with a lot of basic needs, which is a whole other thing, but I don’t think you ever really adjust to the logistical aspect. The fact that if someone has to call off for whatever reason, you’re suddenly scrambling to find a replacement so you’re not just stuck.

In an ideal world, there would be layers of built-in backups, and I’d never have to actually worry about not having anyone. The real world, however, doesn’t exactly work that way. Finding caregivers is HARD. It’s a really multilayered issue – caregivers are drastically underpaid (it’s basically considered “unskilled” work), which results in lots of turnover. Agencies that hire these caregivers are so desperate to hire that there’s often very little done, personality wise, to screen to make sure they’re actually a good fit for the job, and even less to make sure they’re a good fit for any particular person in need of care.

This is all one thing to hear in theory, but it’s really really stressful and frustrating when it plays out in real life. My normal caregiver is on maternity leave right now, and it’s been a real struggle as the agency I use tries to find someone to replace her. There are so few caregivers available that I don’t really have the luxury of saying no to someone who isn’t really a good fit for my needs – I’m forced to make the decision between not-great care and no care at all, which really isn’t a choice. I even have the “benefit” of living at home, which means my parents are available to act as caregivers, too – for people living alone, there are even less choices available.

When you’re not used to dealing with things like this, it can be hard to understand the impact it can have on your life. It adds SUCH layer of underlying stress to everything else already going on. I think it’s one of the aspects of disability that doesn’t get talked about as much, partially because not everyone needs help, but also partially because it’s largely unseen – a lot of it happens at home, not in public.

And while I was writing this post and getting ready to publish it, I had a caregiver call off about 2 hours before she was scheduled to be here, which means there is a very low chance of them finding a replacement. So much hinges on the schedule running smoothly, and when it’s so easily thrown out of whack it has a major impact. But life doesn’t stop just because a caregiver can’t make it, and it’s that underlying stress that can make everything else already going on in the day that much more difficult.