The first person I see in the morning when I wake up is my carer. They get me out of bed in the morning and they help me to bed at night. My team of carers don’t just do those personal care kind of jobs though. They also help me swimming, busking, shopping…a whole range of everyday tasks and fun leisure activities. So it is very understandable that they start to feel like friends or even part of the family. When you have a permanent disability and need care work every day you need a team of carers. Finding carers that you can relate to, that you are comfortable with spending periods of time with, AND don’t mind being out and about in the community with is really important. You wouldn’t want to spend a lot of time with someone you don’t get along with or relate to, and likewise, having carers that you “click” with is essential.
The other day one of my carers said something that got me thinking. The carer, fairly new to the job, exclaimed “This doesn’t feel like work”! That is not the first time I have had the conversation with one of my carers about this either. Often, when doing social support work or community based activities in particular there isn’t a high level of typical “personal care” tasks and often you do both end up having fun. When you truly get along with your carers it just feels like you are hanging out with a friend. A very helpful friend! To be honest, that is what I want with my support workers. I am just like any other young adult and I don’t want to feel like I have a nurse or a parent figure with me the whole time! Some people don’t even like using the term carer. They feel it categorizes people into roles of carer-patient dynamics. Some prefer the term attendant, companion, support worker, or something of the like. I use all these terms. To me it isn’t about the term I use but rather it is the dynamic of the relationship. However you choose to term it though, the fact remains that there is a lot of confusion over boundaries and whether it is ok to be “friends” with your carers. Questions are always raised about issues like whether it is ok to have their personal phone number, or socialise outside of your actual shifts? Can you be friends on Facebook? Can you give and receive presents? The list goes on. These are just a couple of examples of a minefield of questions around these issues.
Fact is carers become a part of your most inner circle. You often see more of them than you do your best friends! What becomes tricky when you introduce the concept of friends into the equation is the distinction between what is considered work and when is it just social? And the big question remains – why it is so taboo to be friends with your support workers?!
There are rules to protect vulnerable individuals and carers from harm, and there are rules to protect against inappropriate relationships. Both are very important. However, it is unrealistic and unfair to apply blanket rules that either restrict people from becoming friends with care workers or make them feel that they are doing something wrong if they are? Regardless of rules and regulations, you can’t deny feelings of friendship and nor should you have to! And if the waters weren’t murky enough with the carer to friend dynamic, what if you have friends who you want to train up to be your carers? In the current climate of embracing change within disability sector, embracing new technology and embracing the individual’s right to choose how they want to live their life we have a chance to re-examine issues like these. There is no denying that they are incredibly complex but the question remains, why does my care have to feel like work? Isn’t it wonderful if it doesn’t?