Young Carers Awareness Day: meet Adele-Caitlin

Antonia_Alumni

Today is Young Carers Awareness Day, 31st January 2019. This day is for raising awareness on young carers who care for their loved one. @AdeleTaylor spoke to us about her experiences as a young carer and what she is up to now.

 

Hi Adele, would you like to introduce yourself please?

Hi, my name is Adele (Adele-Caitlin) and I’m an eighteen-year-old disabled young carer as well as an aspiring writer. All my life, I’ve seen writing as an outlet for expressing emotion but also a way of raising awareness of young carers and the different disabilities that affect my life. I recently began a blog with the purpose of uplifting people with similar issues by showing the bright-side of life with disabilities and caring roles.

 

How old were you when you became a young carer and when did you realize you were one?

I was only 2 years old when my dad was diagnosed with the rare brain condition called Intracranial Hypertension (IH). It wasn’t until I was 5 that I realised I was different; I assumed everyone’s Dad was ill, until I saw the other children at school with theirs. I was being bullied for my caring role and I asked my mum “why aren’t there any books to help young carers?” So, she wrote ‘Caitlin’s Wish’, a children’s book explaining IH and young carers in a magical way to make young carers feel less alone and to help other children understand their role.

Since then, my Mum has been diagnosed with Ehlers Danlos Syndrome; she was always ill, but still had to be the main carer for my Dad. My brother has a form of Autism and Mental Health issues. I have Ehlers Danlos Syndrome too and I’m also currently being tested for IH.

 

What was your day to day like as a young carer?

Growing up, my brother and I felt different to other kids. We couldn’t go out and do the family activities that most kids could, and we became very quiet, due to my dad’s noise sensitivity, so mum made up fun but silent games for us. Even though mum did the majority of caring, I had to mature quickly, because I needed to help out from a young age, with things like laundry, tidying, cleaning up and making snacks or hot drinks. Nowadays, I help with cooking, cleaning, laundry, sorting out medications including morphine, driving, emotional support and shopping. 

 

How did you manage school, friendships and your wellbeing with your caring role?

My parent’s health conditions could deteriorate quickly, so I felt anxious to leave them and go to school. During school years, I was managing my own bad health and trying to cope with my caring role, anxiety and bullying. My brother was also going through a rough patch which was putting a strain on the whole family. It felt impossible to concentrate, let alone get out of bed in the morning due to lack of motivation, mental energy and being ill myself. However, I found visiting friend’s houses helpful as it gave me a break, although, seeing their families doing the usual activities always upset me a bit.

Did you ask for support from family, friends, a carer centre or support group?  

We were lucky enough to have had support from the Crossroads Carers for a while when mum needed surgery. They picked me up from school, cooked and cared for dad, although this help isn’t available anymore due to lack of funding.

I was also lucky enough to be a part of the SNPT Crossroads Young Carer’s Project for 5 years. They gave us experiences that our disabled families would have struggled to do. We always went on fun residential trips and had a weekly club. But, when I moved further away in 2012, it became more difficult to go and I didn’t have the health that I used to, so I had to focus on school instead.

What advice would you give to young carers?

I would tell them that there’s always support out there. Whether it’s online groups, websites that have a range of support and information or a local club. Also, it’s perfectly okay to be different, nobody’s remembered for being the same, are they?

 

What activities do you enjoy?

I’ve always enjoyed writing and art. I loved horse riding, but it made me ill, so I stopped. I find expressing emotions in creative ways is very therapeutic. Most of all, I really love to spend time with my family, even if it’s just watching a film at home instead of going out.

 

What are you up to now?

Now, I’m beginning a creative writing degree with the Open University, so that I’m able to volunteer with the local young carer’s club and maintain my caring role. Also, I’ll be able to rest while doing work to look after my own health too.

Although some people assume Young Carers have limited options, the support I’m getting to achieve my goals would prove otherwise!

 

Were you a young carer or do you have a young carer caring for you? Please share your experiences below.

anaqi

My heart sinks when I hear the term 'young carer'.  I am a disabled parent and I have fought long and hard to get the support I need to be a parent to my children so we can have as normal a life as possible.

Here's a thought.  If all disabled parents got the support they needed there would be no such thing as young carers.  

Offering support to children of disabled parents is one thing but I find it deeply upsetting and morally wrong to make those children responsible for their parents care.  I personally believe we should be doing everything possible to make young carers a thing of the past rather than celebrating it as if it is a good thing.

Unfortunately my local authority (Nottinghamshire) are now forcing my teenage children to become young carers.  My needs have not changed but I have had my care budget cut by a third because they say they can provide care for me.  They haven't even asked my children if they can do it and they have ignored the fact that two of them have the same medical condition as me.  They tried to force them to have young carers assessments but I said no.  They are not young carers because they do not care for me and I don't want them put in that position.  My children need to concentrate on their studies, manage their pain and fatigue and most importantly be children because they will never have that opportunity again.

Antonia_Alumni

Hi @anaqi

Thank you so much for your reply and sharing your story with us. I totally agree there should be more support, which will lessen or stop the responsibilities given to young carers. 

I don't necessarily think it's been celebrated as a good thing but to raise awareness and share the complexities of caring for a loved one and hope for change. 

I am sorry to hear this, please do keep us updated in our Disabled Parents discussions page and we will be happy to support you.

CaderMac

Thank you @AdeleTaylor for sharing your story, it was lovely to read. I think that Young Carers, although they are under a lot of strain, often grow up to be really wonderful adults because of their experiences and skills they have learnt. I work with a lot of siblings of disabled children, and because of the time they have spend with their disabled siblings as carers and as friends they are amazingly kind, empathetic and mature young people. Young Carers are really special!