When Help Just isn’t Working: Letting Go Our Personal Care AssistantOctober 13, 2009 at 8:44 pm | Posted in Around the House, Megan's Blogs, Ramblings, The Nitty-Gritty | Leave a comment
Tags: daily living, disability and marriage, disability and relationships, disability self advocacy, household chores, Megan Cutter, personal assistants, personal care assistants, self advocacy
So today was not a fun day. We had to have a discussion with Barton’s morning personal care assistant, and in the end, we parted ways. It’s a bittersweet decision because we had worked so hard to get morning help to begin with, but we found that some underlying issues to be too detrimental to our household to continue.
Since being with Barton, we have only had to let go of help maybe two times. The first was a little more light-hearted since we had hired a student from the University who couldn’t get out of bed until 11am in the morning. The final straw was the beans incident. In a condensed version, I came home to a sink brimming with black murky water and the overpowering smell of Draino. A few days earlier, he had made Barton not one helping of black beans, but the whole bag of black beans. Yes, it was my mistake to be running late for lunch, leaving the container of beans on the counter. Apparently, Barton’s assistant dumped the entire pound of black beans into the garbage disposal. Now, what do you think happens to beans and water in a drainpipe? Just a note, if you try this at home, we are not responsible for the repair to your own drainpipes. Then, to “fix” the clogged pipes, he poured a whole bottle of Draino in the sink, and I’m wondering if it was just for spite, he turned the dishwasher on before he left!
Today’s discussion was a bit more on the serious, and we realized there were some subtle underlying issues that began to create a rift. We had finally found someone who had been in the field for a long time, and was experienced in a hospital, group home and residential home settings. We walked through the normal questions and a modeled the routine of the day. She was on one train of thought, with a specific type of care for Barton, usually working with someone that has a care provider.
But how do you integrate that work into the household that includes both of us, especially when we are working to break down the notion that I am Barton’s care provider? On the first day, Barton was so excited because he wanted to make me breakfast, but was told she was there only to take care of him. How could he communicate that there were things he wanted to do to take care of the household or me, as his wife, but needed some extra assistance in doing so? While we didn’t specifically address the times when Barton would want to include helping me with the household chores, we found the personal care assistant to be inflexible at even the smallest request. Barton tried to explain that I was his wife, not his mother or caretaker, and while the acknowledgement was there, the action didn’t really change.
Not only that, but Barton was feeling more and more like he was losing his voice about how he wanted things done, and that frustrated him because we were in our house. He likes is showers short in a particular way, and like most guys, hate it when other people dote on him. However, his assistant had a particular way as well, and they didn’t quite jive. At the same time, my best writing comes out in the morning, but getting interrupted to get this or that, I was quickly losing focus. I almost felt like I needed to leave our house just to get one thing accomplished. And we didn’t realize how we missed eating breakfast together- it was an important part of starting off the day.
Slowly, I noticed Barton was getting irritated and I was getting frustrated, and pretty soon, the rift was large enough for us to see. I am sure that from a personal care assistant’s perspective, it’s difficult to work with a married couple because the lines blur between working for the individual and working for the couple.
There aren’t any simple answers. Only the ones that come with trial and error, experience, communication, learning, and we’re still just rolling along in that process!