It’s just like walking a tightrope, and to me, it feels like it requires the same amount of focus and concentration. One wrong move could spell disaster. And just like a circus performer, if the setup is wrong or the rules aren’t followed, someone could end up getting seriously hurt.

Every day I have to manage the delicate balance between accommodating my caregivers as much as I can, and being their boss. From the outside looking in, it seems black and white. I advertise the position when I need caregivers. I interview people, hire them, and make sure they get lots of training about my routine before they officially start working. I have developed many caregiver policies, and when I have a full team of people working for me, I have weekly scheduling meetings with the whole group. I also routinely check in with those who work a lot of hours, to see if we need to shorten their shifts or do anything to prevent burnout. I pick the people who come into my house and help me in the bathroom, among other things. They work for me.

Well, only technically.

The reality is different. Experience has taught me that sometimes I am completely at the mercy of someone who decides they would rather do something else than show up to work when they are supposed to. Since that is the case, I try to be flexible. I can usually work around other things that come up in the life of a caregiver. We start shifts at different times or vary the length so they can do most of what they want to do. And I am happy to accommodate in those situations because I sincerely appreciate all that my caregivers do for me.

About a month ago, I was in the midst of my seemingly never ending search for quality caregivers. I advertised in all the usual places, Craigslist, the pre-nursing club at the local university, and I posted messages on Facebook describing the kind of person that I was looking for. This time in my search I went outside my comfort zone and went a few steps further. I contacted former caregivers to see if they knew of people who might be interested in the job. I also advertised in the local student newspaper on campus. I had hoped that all of this effort would bring in a steady stream of qualified candidates. It was not to be. It isn’t that I didn’t get any applicants, just not nearly as many as I was hoping for.

Given that I have hired my own caregivers for nearly thirty years now, it is pretty safe to say that I know what I am doing. Am I an expert? Not at all, but I have a pretty solid idea of the job that I advertise and the kind of person that I am looking for to fill it.

So when “Susan” came for the interview, I started out in the way that I usually do. After the initial introductions, I say something like “I want to make it clear from the beginning that whoever works for me is taking on a tremendous amount of responsibility. I am completely dependent on my caregivers to get help in and out of bed, in and out of the shower and to be driven from place to place, running errands and getting to appointments. I cannot get done what I need to accomplish during a day without the support of my caregivers, so this is NOT the kind of job where you can call before your shift and tell me that something came up and you won’t be working. I am WAY too dependent for that.”
Pretty simple, right? Most everyone that I interview understands that there are many basic things that I am unable to do by myself, so they need to be here to help me.”Susan” said that she understood that as well. At the time she seemed like a good fit. Sorority girl. I had worked with many. Wanted to go to nursing school. That was a plus. I hired her. When she came for training with another caregiver I had, she seemed to pick up my routine easily and make pleasant conversation. In the time between when “Susan” trained and her application got processed through the payroll company, there was a snag. I had several people quit without giving me much notice. To say that I was shorthanded was like saying a marble could fill a bouncy house. When I realized how shorthanded I was going to be, I apologized to “Susan” from the bottom of my heart. I told her I had never been down so many caregivers at once and I was working diligently to get more people hired. Through several conversations, she told me she would work with me to do whatever I needed.

Right after she stated working she told me that she had made plans several weeks before  to go out of town for the weekend. What that meant was, although I had some friends who were willing to fill in a bit; I would be alone for extended periods of time for almost four days. Long stretches of time alone changes my perception of my disability. On a typical day, when I am by myself in the afternoons, it doesn’t seem like a big deal. Caregivers are usually pretty good at setting things up beforehand so that I can get to what I need when nobody is here. However, when I spend long hours alone, gradually my disability feels bigger than I am. It is during those times when I am keenly aware of what would happen if I lost my balance or got sick and nobody was coming for hours or days. It was for that reason that I asked “Susan” to come by for a while on Sunday night when she got back in town. I told her that I would feel better if she would check on me. She assured me that she could do that. I sensed the first sign of trouble when I got an email from her at 5 p.m. on Sunday afternoon.

“Hey Lorraine, I know you have been mostly alone for four days, but it doesn’t look like I am going to make it back in town tonight. Sorry.”

Come again? Have I mentioned how easy it would be for me to fall and break a hip if a transfer goes badly when I don’t have a caregiver here? That being the case, when a caregiver doesn’t show up for a night shift, I won’t take the risk. I spend the night in my wheelchair, which means that, on those days, I am in my chair for about thirty hours straight. That scenario is incredibly hard on me. I am stiff and in significant pain and it takes my body about a week to recover. Don’t get me started on what that kind of thing does to me emotionally. I explained all of this to “Susan” in detail the next time that I saw her. In that conversation, she told me that she had been accepted into nursing school.

Two days later another email came. “Hey Lorraine, I know I agreed to work a shift Friday night, but I forgot that I have a school project to do, so I won’t be coming.”

In what universe does an employee get to dictate when she will or won’t show up for a shift she previously agreed to without discussion? She made no effort to compromise, to offer to come by for half an hour to get me into bed after she was done with her project. Knowing the situation that she was putting me in, she basically told me to fend for myself because she had something better to do. The reason that I hire caregivers is because my disability often makes fending for myself pretty dangerous.

The next time I saw “Susan” I told her we had to have a conversation. I sat her down and told her the impression that I was getting was that she didn’t like her job very much. She tried to protest. “No, I am just really stressed out about my grades, because if I don’t do well, I won’t get in to nursing school.” Since she had told me she had been accepted two days before I’m inclined to think that the school project that she couldn’t miss on Friday night was most likely a party, or some other social event. So I suggested that both of us would be much happier if she found another job, because I wasn’t in a position where I could have anyone bail on a shift they were scheduled for. Because the situation had happened several times, I wasn’t willing to work with her anymore. I needed caregivers to be reliable people that I could depend on.

I walk the tightrope. She crossed the line.  It was time to show her who was boss.