About a decade ago, I learned that I would qualify for PCA services. I had recently gotten my first subsidized (income-based) apartment through public housing. It was in the building’s laundry room, as my 6 yr old son and I did our laundry together, that a PCA herself told me where to apply and that the needs I obviously had that would get me on the program. Within months, I officially was able to pay my own Personal Care Attendant (PCA). It is important that I highlight the official part because unofficially my sister had been my PCA for the better part of a decade. She helped me with, some of my ADLs (activities of daily living), showering, dressing, cooking. I was also aware as my disease progressed so would my needs. I had never heard of having family members work for you in this way. As I did more and more research I learned the requirements and even the program’s existence was not common knowledge. Unfortunately, there were many people with disabilities and their families that caregivers deserve and need to be paid, but are totally in the dark. Paid not out of an individual’s pocket but by the agency that was already reaping the savings from not having so many people in extended-stay hospital settings.
As with most programs, there is an abuse of the system, both on the part of the consumer (person with a disability), and that of their employee (PCA). There is a real need for a program like this and I am a living example. In my first few years as a PCA consumer I had significant trouble, no, I would say refusal to higher anyone other than my little sister. My sister and I have always been extremely close, but after my diagnosis, I think I somehow told myself even though I did not have a body that would obey me and my mind, I always had her’s. Selfish? Extremely. I have learned that when a person is suffering mentally or physically, it feels like everyone around you needs to hurt as well. You know what they say, hindsight is 20/20. Even though some of my rationales were blind selfishness, there is an extremely intimate relationship, when a PCA is truly needed. It’s not only sweeping, vacuuming, cooking, and running errands, also it is someone literally filling in for your legs and arms. Washing hair, shaving legs, and applying lotion. Nevermind on a bad day, when almost every element of personal care is needed.
I have grown a lot in the past 10 years. My husband and I have 5+ PCA’s on a weekly basis. Between timesheets, schedules and covering time slots, it is similar to running a small business. I am learning the best ways to hire and train PCAs. I find once in awhile you win the lottery and find an amazing person on the websites I use. Unfortunately, there are 6+ lemons for every diamond in the rough. There are no background checks required to be a PCA, so it is up to each individual consumer to run one, with any coast absorbed by the consumer. Luckily I have never had anything really awful happen just some bad feelings about people. After they have left my employment, I have had some unsavory information brought to my attention. A consumer in my position is opening their home, wallet, and own body nevermind my children. At face value, people are who they pretend to be and I always try to give people the benefit of the doubt. Not everyone deserves it though and without the proper checks in place, unfortunately, people who have been allegedly charged with crimes are not made transparent.
At least in my personal history the desperate need to have someone anyone to fill the open hours so you can shower most days or have someone to put a pan in and out of the oven so you do not have to risk burning your lap. ADLs such as these are necessities and can not wait for long lengths of time between employees. I still (ten years later) prefer my family and people I have known for years to work for me in a PCA role. If for some reason that is not possible then I tend to rely on word of mouth. At least if the person is somehow known to me I feel safer. The people also are held to some accountability by their reference and therefore tend to at the very least show up for work.
My PCAs are my family. Whether they are biologically related to me or not. They are the people there for my family whenever. Often in my case, that means, the norm, the ugly, the bad, and the gross. If it was not for each PCA, life as I know it would be drastically different. There are not enough scented candles in the world to mask the many different orders that would ooze out of my home without them. All joking aside, it does sometimes does make me sad that I am almost always surrounded by these amazing people (the people I love) and I am work, something they do within their lives. Not to say I am not loved, but I am a piece of their lives. They, however, are my life I wait to start my day with them, I can only accomplish what I set out to do that day because of them and when I go to bed they are their strapping on my leg braces. It is really hard to call on the same group of people that help you live your life as you want to; to then help you have fun too. I find myself reminding myself I am among the lucky, I get to live my life, even if it requires choices like should I have someone make eggs, or should I have them help me shower? I think in my dreams, I get to shower and cook on my own and just love and be with my family (whoever I choose as my family).