It is a natural assumption that from the time of birth, the role of who is your carer is clearly going to be your parents. I mean, you are a baby and only just learning how to survive. The people that brought you into this world are the biggest stakeholders for keeping you alive. But we all kind of assume that as we grow and mature from child, to teenager and young adult. That day comes when finally you are an adult. This is where you ‘fly the nest’. But what about those people who cannot ‘fly’, who will never be able to ‘fly’?

Parents Don’t Plan for This

There is no way a parent can plan for the children they have. Yet, there is next to no way that a caring parent can feel anything but unconditional love for their children. They do so much and most of this goes unseen in the eyes of the child. It is almost expected from the child, regardless of how great the toll on them is. The wisdom in the eyes of the parent is, I can only guess, so profound. Not only do they have their experience, they also know their children so well. From tending to every whim and need for all of those years, they can sense things happening and see changes often before their child can.

You Don’t Even Think About It

As a child, I know I grew up thinking I could do anything. To be fair, my parents never let me think anything different. For all intents and purposes, from childhood, I was a person that did not need to think differently. I even made it into adulthood relatively incident-free. There did not seem to be any reason to think I would ever need a carer, least of all to need my parents to care for me. To be honest, my mindset was more on the side that I considered I would need to be their carer sooner though age-related-reasons than vice-versa. The only way I could see that I really needed their help was if I had trouble with having children.

I Never Saw It Coming

When I started to develop the first symptoms of my Lupus Cerebritis, I tried initially to shelter my parents. The next five years just fell out of my hands and my control. There was no time for me to try to keep possession of my own life. I am not sure if this was due to the illness being in my brain. It may have been that I was just at a loss for my place in life. Having recently given up my working life to study teaching at university, I just felt at sea. The typical thing happened next in that I feel into the role of the child in the main relationship of my life. I stepped back and just expected my parents to take care of me.

Why Did My Parents Start to Become my Carers?

During these first five difficult years, there was no choice, and no way things could be any other way. My mother and father took time off work, and drove to Perth regularly for weekend visits, and to attend my doctor’s appointments. My mental capacity as it was, I was not able to remember what to do, say and ask at the appointments. I’ve missed too many to count. It was not just that I became an unreliable witness, I stopped being able to have conversations with the professionals or relay information to my folks. They began organising trips, helping to get me where I needed to go. Taking notes, asking questions, memorising my treatments. You often hear people saying things such as ‘my memory is a sieve’ because they have poor strategies for taking notes, or they don’t listen to people properly. It hurts to hear this from someone who is healthy and has nothing wrong, because my memory is like a sieve and I get no say in it. Regardless of all the calendars, diaries, alarms and timers I use, with all of the note-taking devices I carry with me and display to ensure I don’t forget things, there was still so much slipping through the gaps. My parents started to care for me, not only to make sure I kept up with everything, but to make sure I wasn’t forgetting to do important things like clean, change my sheets, eat, shower, take medicine. Am I starting to sound hopeless yet? It actually wasn’t all that bad. The only reason I didn’t become hopeless on some fully blown level was because of them and their practical thinking.

What It Meant To Have My Parents As My Carers

First of all I had to give up my pride. You cannot be a ‘know-it-all’, or independent woman, or have any shame or shyness. I had to learn to let anyone, but especially them, help me. This meant learning to recognise, beforehand, that you may not be able to do something, and then feel comfortable asking for your parents to be the ones who helped you. Being open about your bladder and bowel, your periods and puking, dating and dieting. Sure, some people may share these thi ngs with their parents, and be able to hold the kind of relationship that includes the kind of respectful and humbling relationship, but I was not one of them. I was still too immature for that. To be cared for by your parents, let the see you naked into a disabled shower or toilet, you’ve gotta ditch that sh**. Just saying.

What happened next?

That is a hard question. It seems like I am better does it not? In the lead up to this year, my last year at university, the whole extended family was rejoicing. It seemed like I would make it out of university alive (literally). Into the world of the independent adults, all grown up and stuff with a proper uni debt.  But my mum was doubtful. All of last year she would keep dropping comments. “How will you be a teacher?” She phrased that questioned so often in so many different ways. I would laugh it off, but deep down it scared me. In October last year, 2017, my psychiatrist made the decision that it was time for me to start ‘getting my documents in order’. No, I wasn’t dying. She just thought I would need to apply for disability support or a pension of some kind.  Over the Summer months I spent time accessing and reading over the application forms. My GP Evs said that it was a hard process and once it was started it would be hard to stop. She also mentioned that once I started the application process it ‘would go on my record’. Then came the blow in which I learned I wouldn’t be able to become a teacher and I was looking down the barrel of a future with a university debt for a career I could not achieve, or even begin.

And now?

It was decided I was still able and intellectually capable of some kind of career. Would it be in my chosen field? Probably not. Would I love it as much? That depends. Am I going to accept the challenge? The alternative is just too hard to think about. What does this mean for my parents? Before I began university, my parents had their own plans. As I began to get sicker, and stay sicker, I guess their plans change. Clearly, there was no way they were going to ride off into the sunset, or take a river cruise through Europe, while I was…as I was… They never mentioned it, which showed me that even after all of these years they still were ready to drop everything and care for me.

Will My Parents Be My Carers In The Future?

The short version of a long story is, yes, that is the plan for ‘right now’. Sometime in July, they will move in with me. Also, sometime in July I will celebrate my graduation from university. And sometime in August I will celebrate my 30^th. I hope they can enjoy their partial retirement, however much I may cramp their style and I thank God every day for being blessed with such incredible fortune, luck and love.