Dear potential caregiver,

So you want to work for me? I think that is fabulous! I want this experience to be enjoyable and positive for everyone, so I thought it might be best to clarify a few things from the very beginning.

I am in a pretty unique situation in that I depend on the people who work for me to help me with many things throughout a day, and yet I am still their boss.  The fact that both of those things are true  has proven to be difficult for me at times.  I would not be able to live without my caregivers, but  I still want to be seen in a position of authority.  That issue is probably one that I struggle with the most, so it is helpful when I have caregivers who understand that I strive for a balance in what seems to be two extremes in working with my caregivers.

I am incredibly dependent on other people. I cannot drive myself from place to place, put on my socks and shoes by myself, or clean myself up in the bathroom. Since I was born with my disability I have never known any different, but my circumstances mean several things for me.

First, I am not in a position where I can have a caregiver call me before their shift and say something like “I had friends come in from out of town unexpectedly, so I won’t be working today.” or “I didn’t anticipate that my homework would take me so much time, so I cannot come in for my shift this afternoon.” Everyone who works here is taking on some responsibility. My livelihood depends on my caregivers showing up on time and doing what I need them to do. It is important that people show up for every shift that they are scheduled for and work until the end of their shift without interruption.

Second, I don’t have a whole lot of power in my life. There are very few places I can go on my own without depending on someone else’s schedule, and there are basic everyday things that I cannot do for myself. Therefore, I like to have power in small doses, anywhere that I can get it. I need to order for myself in restaurants and speak for myself when we are out in public. Even though I am forty-five years old, you will be amazed at the number of people who will speak to me as if I am a child or try to speak to you in order to get information about me.

Once, a few years ago, I went out to lunch with a caregiver, and after we got to the table, the waitress asked my caregiver if she needed to get a children’s menu for me.  I responded that I was really hungry and I would probably eat more food than a child’s portion, so a regular menu would be just fine. True story.

If someone asks you questions about me in my presence, I request that you don’t respond, or let the person know that I am perfectly capable of speaking for myself.

Another way that people can give me power is by making sure I have a say in the way things are set up or how things are going to be done. I completely get that there are certain times people cannot work because they have class or they have other things going on. However, when people say that they can work certain shifts for me, I like to discuss the times that they will be here. There might be certain nights I would like a shift to start a half hour earlier or later, because of something I have planned. I like to communicate about those things before anything is set in stone. I appreciate conversations like that because they make me feel respected.

I know that many people want this job for the experience it will give them toward their future career. And I understand that from the bottom of my heart. Being a caregiver is a great way to get a feel for whether you want to be a nurse or a physical therapist or a physician’s assistant, or something similar. Lots of things happen in my life that makes those kinds of skills necessary. The one thing that I ask is that, while you are working here, those needs are secondary in your head. When people are in my house doing their job, my hope is that my needs come first and that you are here because you want to make me more comfortable.

Although I want this job to be casual and to have a laid back attitude in almost everything that I do, I need my caregivers to understand that their position is still a serious job, and it needs to be treated as such.  Everything that you do during your shift needs to be for my benefit.  I need people to show up on time, take care of all the tasks that they perform and not take too many breaks. The guideline that I like to go by is this.  If there is something that you would not ask of or do to any other boss that you have, please don’t do it with me.

I need to let you know about a little quirk that I have. I feel strongly that I don’t have to be grateful. Let me explain. Given the situation that I am in, I need help with many things on a daily basis. And I sincerely appreciate the help that I receive. To me, appreciating help implies that I am on the same level as a caregiver and that they see me as an equal. Being grateful, on the other hand, implies that I am on a different level than whoever gave me help. It implies that they did me a favor and I owe them something in return. Since I need assistance with so many things in a day, I cannot live my life thinking I owe people for helping me. I would never catch up, and that would hurt my soul in ways that I can’t adequately explain.

One more thing. I consider the people who work for me to be caregivers, not caretakers. I am an adult and nobody takes care of me. People give me support and help with the things I would struggle with if I had to do them on my own. People give me care so that I can be as independent as possible and live in my own home. I work with caregivers.  Looking at things from that perspective feels the best to me.

So, you think you want to work for me? I think that is fabulous!

Let’s work together!