When Someone Said My Life Was 'Easy' Because I Have Personal Care Attendants

I remember someone once said to me that my life was very easy. I looked at them with a puzzled expression because I’m not one to complain, but easy isn’t how I would describe my life. I asked them for more 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 was also 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 what personal care attendant services are like and the regulations in my state of Pennsylvania. I, and the thousands of others who need personal care, are truly blessed to have services that help us not only be independent, but to 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 that I would manage to survive, but my quality of life would greatly diminish.

However, personal care attendants aren’t maids that just do everything for you. They’re people like anyone else who work to assist you in what you can’t do. Everyone has a different personality, work ethic, strengths and weaknesses like any employee. But these employees work with you on just being you. They help get me ready, feed me, help with my house and all that comes with it. I live a much more structured life than I might like. If my attendant is coming in at a certain time then I best be awake no matter how badly I slept before.

Communication starts from the minute you wake up to the minute they are done with their 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’re a boss of any company because the company is very important — yourself. I’m not saying this is all bad, but being a good boss from sun up to sundown can tire someone out. Not to mention that you need to be ready with what you want done that day, how you want it done and able to oversee it being done.

Having a personal care attendant isn’t a luxury. It is a necessity. Being a mother also adds another dimension because it doesn’t just become you and your children. 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 way, you’re always on display. 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 going smoothly isn’t 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 back 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 they are! No one seems to be able to tell me what the problem is, because it has been approved. Tomorrow I will be back at trying to find answers and praying that my attendants get paid on time.

Imagine having attendants who work hard for you not being paid for their job due to no fault of your own. It’s stressful for my attendants and on me because I care about my workers. I am also at risk of losing them because they need money to live.

If you believe people who have personal care attendants have it easy, please think again. We are all just people trying to weave through this life.

This article was first published on cerebralpalsynewstoday.com.

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