Relying on caregivers may be one of the most frustrating aspects of living with paralysis. It puts you in a vulnerable position, which in turn leaves you open to a whole barrage of individuals who could work for you. This is where you need to get smart. Learning how to hire, communicate, and fire caregivers, when necessary, is key.
Unfortunately, too many people find themselves stuck with caregivers who are taking advantage of their situation in all kinds of ways. When you rely so heavily on a handful of people to literally take care of everything you need in order to stay alive, you find yourself looking the other way when it comes to bad behavior by your caregivers - and this is not good.
Take for example the well-written article by Hannah Soyer, a woman with a disability attending the University of Iowa. In her article, she talks about how she was too afraid to let go of a caregiver because of their hostile personality, and instead had to devise a way to get the said caregiver out of her life by waiting a year and slowly cutting down her hours. It was a situation that should’ve never happened.
This is not the right way to do it if you have options. Unfortunately, many people with disabilities do not have them, which is why they stay with caregivers who are abusive. Especially in states where caregiver assistance is barely covered by Medicaid, these individuals are less-empowered and frequently will keep a caregiver on-staff when they shouldn't. These stories are told time and time again online.
As a person with a spinal cord injury, you have to "put yourself out there" with a caregiver, both mentally (trusting) and physically. This can take a toll on your mind without you even realizing it. Some people call this “forced intimacy” and it can lead to a lot of anxiety for a person with a disability, especially if they do not like the caregivers taking care of them. To remedy this, try to hire PCA you feel truly comfortable around.
Setup your own interviews. Do not forever allow a home health care agency to staff you. In many states, they will allow this and your agency will simply add whoever you hire to their roster. Sites like Indeed, Facebook neighborhood pages, and Craigslist can be great locations to find PCAs as well. Ask for a resume and ask casual, fun questions to make sure you’ll get along.
Over my 25 years of needing PCA's, I have had several instances of being stuck with a PCA I didn’t like because she either was mean, taking advantage of her job, or not listening to the way I needed my care done, and I never knew what to do. It can be scary. I have routinely been afraid of letting these particular caregivers go, afraid of the retaliation I may face, which is silly I even have to think about it. The hard truth is that there are evil people in the caregiver world, and it is up to you to watch out for them.
