Someone once said to me that my life was very easy. I looked at them with a puzzled expression because, although I’m not one to complain, easy isn’t how I would describe my life. I asked them for clarification on why they would say that. Their explanation was quite simple, but extremely surprising to me.
My life is easy, according to them, because I have personal care attendant services and they do everything for me. This also was said at a time when I was a single mother to my baby daughter after my husband had unexpectedly died. They went further to say that I wasn’t a true single mother because of my attendant care.
I would like to take this opportunity to shed some light on the reality of personal care attendant services, and the regulations in my state of Pennsylvania. I and thousands of others who need personal care are truly blessed to have services that help us be not only independent, but be healthy, safe human beings. Without attendant care, I would fend for myself while my husband would be working, which means I would go hungry, thirsty and not be able to use the bathroom. I am pretty sure I would manage to survive, but my quality of life would greatly diminish.
However, personal care attendants aren’t maids who just do everything for you. They’re people who are like anyone else, and they work to assist you in what you can’t do. Everyone has a different personality, work ethic, strengths and weaknesses. But these employees work to assist and help you be you.
They help get you ready, feed you, help with your house and all that comes with it. That being said, I live a much more structured life than I might like. If your attendant is coming in at a certain time, then you best be awake, no matter how bad you slept before. If you want to do something out of your routine, you best be ready to justify it and hear about it if they might not agree.
Communication starts from the minute you wake up to the minute they are done your shift. It doesn’t matter if you’re groggy or in a quiet mood, because you are the boss. You need to be as present as you would if you were a boss of a company. The company is very important because the company is you. I’m not saying this is all bad, but being a good boss from sun-up to sundown can be tiring. You need to be ready with what you want done that day, how you want it done, and then oversee it being done.
Having a personal care attendant isn’t luxury, but it is a necessity. Being a mother also adds another dimension; there’s this whole other person who has their own ideas, feelings and thoughts that you need to incorporate into how you handle your child. In a sense, you’re always on display. So, yes, if you’re a single mother with a disability, it doesn’t matter if you need personal care because you’re still your child’s only parent.
Getting and keeping attendant care to go smoothly isn’t always easy where I live. Every year you are given a certain amount of hours to use and a payroll company handles the paychecks. If there aren’t any problems, this method works great. However, I’m going through a situation now that is very stressful. My hours for 2017-2018 were approved in April, but I just found out that the hours aren’t in the system. Therefore, my attendants haven’t been paid and won’t be paid until the hours problem is worked out. (No one seems to be able to tell me what the problem is because it has been approved.)
So, imagine now having attendants who work hard for you not being paid for their job due to unknown reasons, and through no fault of your own. It is stressful for my attendants and on me because I care about my workers. I also am at risk of losing them because they do need money to live. Tomorrow I will be back at trying to find answers and praying that my attendants get paid on time.
The next time you might want to think people who have personal care attendants have it easy, please think again. We are all just people trying to weave through this life.
Note: Cerebral Palsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.