To mark Carers UK's 60th Anniversary in Scotland, we are using our platform to share the stories of carers across the nation. 

This story kindly comes from Irena who cares for her two adult children who have Down’s Syndrome. 

 

I still remember seeing the horror film “The Haunting” for the first time. The old one; many of you are probably much too young to remember it. Truly scary! One of the main characters of the plot is Eleanor, a dried-up spinster who spent all her adult life caring for her invalid mother, and it wasn’t much of a life, I can tell you. That was my first encounter with the concept of caring. I was a teenager.  

Soon afterwards time came my second experience with it. Despite her strong beliefs that should have demanded that my mother care for her mother, my grandmother, when she couldn’t live alone anymore, she decided to put her in a home. Just like she later did with my father. 

These first impressions formed a picture. Caring for a helpless relative is something Christian, and demanded by social ethics, but which is such an unpleasant task that many people, even my very strict and demanding mother, shy away from it. In short, something to be avoided at all costs. 

Well, I have to admit, Eleanor’s mother in The Haunting was a real devil. No one could have liked caring for her. And we all know that there are people it is not at all pleasant to be around – whether as a carer or just as company. 

But that has nothing to do with caring as such. This is something I have come to see since I became a carer myself, nearly 25 years ago now. I care for my two kids – well, adults now – with Down’s syndrome. For the first years of their life, there was not much difference compared with having kids without a disability – only this was a stage that never ended and will never end. They still need as much help now as they did as kids of two or three years, and I am still fully responsible for them. They still need support with everything, I have to be around all the time, am never just my own person, and I spend hours every day to take care of their needs. (Fortunately, I am a freelancer working from home, so I can be both a carer and work.) 

Of course, there are people we would not want to take care of, the really unpleasant people I already mentioned. And of course, everyone is allowed to say no and look for other options, for example a care home. Sometimes your job or your own health or something else make it impossible for you to be a carer, and that’s absolutely okay. But if circumstances both allow and demand that you be a carer – do it! 

Why?  

Because, first of all, it is what you should do, everyone will tell you that. And doing your “duty”, so to speak, is something very rewarding in itself. It silences the small nagging voice inside telling you that you took the easy way out at the most unexpected moments. This voice can dampen your lifestyle nearly as much as caring does. 

But don’t worry – there are so many other rewards. And I don’t mean the people you care for saying thank you. They don’t need to – you can see it. Yes, being responsible for them is a great burden, but it is also a great happiness. If you succeed in getting them what they need and want, if you do your job well, it’s an incredible feeling. There is another human being enjoying life as much as possible – because of you! 

And then there are all that the people you care for are giving back. It is always a joy living together with other people – yes, there are downsides, too, but we are not made to live alone. You see the trust they put in you, that you will take care of them, you see their love. Both my children are non-verbal, or rather, my daughter speaks a few single words. But even my son, with severe autism, can show affection. He usually lives in his own world, but sometimes, rarely, you get a hug – incredible! And my daughter hates household chores nearly as much as I do, but she tries to help wherever she can, I don’t even need to tell her. 

Sometimes this has unexpected consequences… I remember, back in Germany, when we were still drinking bottled, sparkling water, I often used the flat remnants in a bottle to water the plants. My daughter saw this, and promptly “watered” the plants as well, with the rest of her bottle of coke… It was sad, of course, that one plant died, but in a way, it was funny, too, and it clearly shows that she wanted to help, to make my life easier.  

Okay, admittedly, I sometimes wish I did not have to do all the caring, I could live a life thinking only of myself. But then, who does not sometimes wish for another life than the one they have? That’s completely normal. All in all, I am happy with my life. And yes, sometimes I resent having to wipe arses endlessly, not being able to spontaneously go on a short trip, having to manage three lives instead of just one. But after only a short while, caring becomes a completely natural part of your life. Yes, there are unpleasant duties – but like I already mentioned, I also hate all kinds of household chores, and so that, too, is simply part of everyone’s life. 

You give a lot, but you also get so much back. That would be the case even if my kids weren’t such pleasant, lovable and loving people. 

Let’s face it – society demands that we do care for our relatives if they cannot care for themselves, just as we would hope to be cared for if we needed it. This was just an ideal concept, but it is a very old one. And with the care sector being what it is today, it will soon become – and partly already has become – a necessity. 

It's a task we all can fulfil, and this life, the life of a carer, is not in itself more of a burden than a life without being a carer. It’s just different, you have different problems. But we all can do it. You can do it. And it’s the right thing to do.

 

 

This story was submitted to us to mark Carers UK's 60th Anniversary in Scotland. You can find the other stories in this series at the links below.

Full-time caring – a journey to mastering mindfulness
Our Story
Sarah's Story