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My unexpected life as a carer — yes, it’s tough, but also so rewarding!

Posted onPosted on 4th Jun

To mark Carers Week (6th-16th June), Mansfield man Andrew Norton, the proud father of his 24-year-old son, Kieron, who has quadriplegic cerebral palsy, felt inspired to put his story of being a carer into words. He said: “This is a very honest, open account of what it is like to be a carer.”

It is 20th April, 2000 — A day I will never forget. It started preparing for a holiday to Scotland, only to end up with my wife, Sharon, being rushed into hospital and a member of staff saying, ‘Mr Norton, you are going to be a dad tonight’.

No, I thought, this can’t be right, the baby isn’t due until August.

Sharon had been diagnosed with pre-eclampsia and HELLP syndrome. Nine hours later I was indeed a dad when Kieron came into the world, weighing just 1lb 5oz!

I have many experiences and memories I could share, but there is not enough space here. I remember vividly the day the consultant told us about the cysts on Kieron’s brain and that he would either have problems with his movement or vision.

Sharon and I ended up in Sheffield Cathedral, where we cried so much and begged with God for Kieron to be OK.

After a year Kieron was formally diagnosed with quadriplegic cerebral palsy and the joys and pain of being a carer really started.

I have to say right here that being a carer is really tough and tiring (physically and emotionally) — but it is also so rewarding and we are so proud of what Kieron has achieved.

Kieron is now 24, an amazing young man, and a real example of battling against adversity. We always said his disability wouldn’t stop us doing things and we have shared many great experiences as a family — the London 2012 Paralympic Games, and the Rugby League World Cup Final at Old Trafford to name just two.

So how has it affected me as a dad?

From a work point of view, I have been lucky that my employers have always been so caring and understanding.

Working full-time and being a carer can be brutal. I had a period when Kieron woke up 15 to 20 times a night, and I was still working. You can imagine how hard that was!

Over the years I have had time off work for stress, exhaustion, and various other combinations, but I’m still winning… just.

So what about my health; how has being a carer affected me?

Well, my mental health has taken a battering at times. It took me many years to get my head around Kieron having a disability and that I wouldn’t get to do things that other dads do — playing football in the park, for example. Even now, I sometimes get upset when I see a family playing together, but I just look at it and say us, as a family, we do different stuff.

In February 2016, things got even tougher for me when I was diagnosed with ME. I never saw that coming! At 43 I was struggling with no energy and collapsing on the floor, having violent muscle pain and brain fog to name but a few of the symptoms.

You might think that’s bad, but imagine how Sharon felt having to look after Kieron and also me to some extent.

One day I collapsed in the hall at home and Sharon had to leave me ‘comfortable’ on the floor while she sorted Kieron out. I laugh about it now, but didn’t at the time.

Having ME has made being a carer so much harder and there are times I feel useless (I know I’m not) and wish I could do more, but my body won’t let me.

We have carers from Monday to Friday in the week to take the pressure off myself and Sharon. We say to Kieron, don’t worry, if dad is OK, we’ll still do stuff, and if my ME is bad, we just do it differently.

Being a carer got even tougher again in March 2023, when I suddenly lost all my appetite and loads of weight — I’ve now lost more than four stones in 14 months.

After lots of tests, in December a doctor said they were putting it down to my ME and long covid.

I now really struggle to help care for Kieron on some days because I’m so tired, and I feel terrible about it.

Kieron is such a loving, caring son and he just takes me as I am. He sometimes buys Sharon and I a ‘love you’ — perhaps a meal or simply something from Amazon. It’s his way of saying thanks for us looking after him.

I could go on and on, but space does not allow. So, in conclusion, nothing can prepare you for that day you realise you are now a carer. and it’s tough.

My message to other carers is, yes it’s hard but keep going, look after each other and never give up. Make sure you get the support you need.

There will be hard days (don’t I know it) but in the still of the night, when you can’t sleep, reflect on all the good times, those that have been and those yet to come!