As I start typing this, it is 7:31 AM on a Thursday. I have only been awake for an hour and a half, but already I feel like I have worked a full day. Some days, it’s like that when you use Consumer Directed Personal Assistance (CDPA) or self-directed home care.
In CDPA, I am the “CEO of me” and I am in charge of personnel. I recruit, train, supervise and manage the home care workers (Personal Assistants or PAs) who work for me. A business called a Fiscal Intermediary is responsible for the administrative paperwork and payroll required so my PAs get paid. In New York, where I live, I choose my Fiscal Intermediary. I happen to be employed by the Fiscal Intermediary I chose, Consumer Directed Choices.
It’s difficult to explain to nondisabled people who don’t use CDPA how intimate personal care is. Personal care creates a codependency in which both parties, the care recipient and the caregiver, rely on each other for a variety of reasons. I cannot function without the women I employ. They cannot function without the wages they earn from their work. We are tied together by complimenting needs, but we have developed relationships over time which go beyond typical employer/employee constraints. And for me, the most important member of my care team is the morning PA.
Today started like most mornings. My alarm buzzed. I shut it off and took stock of my surroundings. I heard Tina, my morning PA, in the bathroom. I smelled coffee. So far, so good.
As soon as Tina came into my bedroom, I knew something was wrong. Her energy was flat and she was not her usual upbeat, positive self. I could tell she was not feeling well and knew this would impact my morning. Tina and I have worked together for seven years now, so it is easy for me to gauge how she is feeling with just a look. She is the first person I see most days and normally makes my transition from sleep to work an easy one. We can anticipate each others movements and know how to make the morning routine go smoothly.
So today I was not surprised when she looked at me and said, “You OK for a minute Dee?” before running to the bathroom as I nodded. Tina was sick and I was going to have to change my routine before even getting out of bed.
This is what happens when you rely on other people. At least this is what happens to me.
When one of my PAs is sick or unable to work, I instantly go into problem solving mode. This level of executive functioning is necessary for me to be able to juggle my own bodily function needs while still balancing the need to show up for my job as my employer expects. The thoughts that filtered through my head this morning went something like this:
Is Tina too sick to at least get me out of bed? Is a shower out of the question? If I send her home, is there anyone else I could call to finish her shift? What is absolutely required for me to be able to function today?
Thankfully Tina was able to help me get out of bed. However, it soon became apparent she was too ill to continue her shift. Then the questions in my head shifted:
Is there anyone else I could call to help me use the toilet? If I don’t shower this morning, when can I shower? What time is my first meeting today? Am I on camera? If Esther helps me use the toilet after her shift at her other job, would I need to reschedule any work meetings?
I sent Tina home after she helped me put on a clean shirt (at least I will be presentable on camera!). I left a message for Esther and turned on my computer. I said a prayer of gratitude – at least I’m out of bed drinking a cup of coffee!
I logged onto my work computer to check email. My body started sending me signals that waiting for Esther wouldn’t be possible. I opened my contact list and started scrolling. The questions began again:
Who is relatively close and could spare an hour to help me use the toilet? Sally can’t make it before she has to be to work. Brooke has class this morning. Margaret never responded the last time I was looking for someone so is it even worth asking her? Maybe Sandy hasn’t left home yet and has time to stop on her way to work.
Thankfully, I caught my sister Sandy just as she was getting ready to leave home. She didn’t need to be at the office today until 10 AM. She had time to stop over and help me use the toilet. It was time for a quick gratitude list:
- I’m up and out of bed.
- I have coffee.
- The internet is working.
- I am able to work from home so it doesn’t matter if I am only dressed from the waist up (Guess what? I’m only dressed from the waist up today!).
- And I’m getting a quick visit from my sister.
Now it is 8:15 AM and Sandy just got here. It’s going to be a good morning after all.