Proper awareness of what carers do could improve our lives

10th June 2013

In the first of a series of guest blogs for National Carers Week, Louise shares the challenges she has faced growing up as a carer and what she thinks could make a real difference to others in the same situation.

Being a carer from a young age obviously made school hard with the constant worry of what might be happening at home. Before my Dad’s MS got too serious my family (my dad, mum and two older brothers) and I struggled to cope with his illness as we didn’t have any help. Often being the first home after school I would find my Dad in difficult situations – from having fallen over, to having not made it to the toilet in time. Looking back I think I was scared of that, so I’d find reasons to come home late for fear of not knowing what I would find – but I’d then have to deal with the guilt and worry in case something had happened.

At school only one teacher knew about my situation, as I felt that if too many knew, I would be seen or treated differently. On a few occasions I walked out of school, risking getting into trouble in order to go home and check on my Dad. As I got older and his health deteriorated he was moved into a care home and allowed an electric wheelchair to help his day-to-day life. Although this was great, as it allowed him some independence, often I would get calls whilst at school saying he was missing. I would then leave school to trace the path I knew he would be taking back home, across lots of busy main roads, which obviously made me worry about the worst!

While studying for my GCSEs and A levels there was a lot of uncertainty surrounding whether my Dad would continue to live at the care home where we knew he was happy. This was the greatest dilemma for me as a young adult carer – I knew that if he was moved he would be unhappy, so I had a constant battle with my conscience. My heart would tell me he should be at home, but common sense would tell me we had tried it before and it had torn my family apart – this was one of the worst feelings imaginable.

I achieved good GCSEs and A levels and I know I tried as hard as I could, but, of course, with the constant worry for my family, it does make me wonder if I could have done better. I’m now 19 and have been working full-time in London for nearly two years now. My Dad is still in a care home but has been through serious illness twice in the last few years and on both occasions my family and I were told he might not pull through – but thankfully he did! I think I’ve come to accept now that it will always be like that, with the constant fear of that phone call saying he’s in hospital again and having to spend days at his bedside not knowing what is going to happen. I’m lucky that most people I work with have been supportive, but on one occasion I was given compassionate leave only to be asked to make up the time upon my return – needless to say I refused and left that job a month later!

I believe so strongly that proper awareness of what carers do and what it actually means to be a young adult carer could improve our lives. Looking back at how hard I found it all, I hope that in the future more will be done for young adult carers and their families. It upsets me knowing that there are so many other young people dealing with what I have and that they have no idea what support is out there for them, but also that many services aimed at supporting young and young adult carers are at risk of closure due to lack of funding. Support groups can go a long way and although it’s going to be hard getting someone to admit they feel vulnerable and need help, more still needs to be done. Simple ideas like designated support staff in schools for carers to go to if they need help/advice, or a card to allow them out of class to make a phone call, are really important – something this simple can give a young adult carer the confidence and motivation they need to go to school without worry.

Lastly and also for me personally, the most important support I received was from the young carers service – if I hadn’t had Carers Bromley’s support for the last ten years, I’m in no doubt that I wouldn’t be where I am now. Just knowing where you can turn in confidence when you feel like your world is falling apart makes all the difference.

 

Comments

Vicky

September 24th, 2013 at 10:03 am

HI, i am in a simular situation right now i am currently 16 nearly 17 years old and my dad has also got ms and has got worse over the years. I know how you feel about worrying all the time. Sometimes I dont even want to go home because it is just to mucb stress. My mum is his full time carer and myself and my brother help out whenever we can. During my GCSE’s I kept stresssing that I wouldnt be able to do it because I was helping my dad and mum all the time I wouldn’t be able to finish and good grades. Thankfully I done really well in them. Now I am doing A levels and sometimes I think I wont be able to get into year 13 because I havent got the grades. At home I am not really able to do homework due to helping out all the time. I have broken down so many times and a few in class. I hate talking about it to my friends because I think im not that normal and none of them will really understand, I’ve even thought people will take the micky out of me. I have been bullied in the past and knocked all of my confidence down.Only one teacher at my school knows my current situation and is very understand and helps me out whenever she can. I now go to a young carers in Dartford. Thanks to them I wouldn’t know what to do, know one to talk to and no where to really go and just get away for a few hours. They have built up my confidence and realise that it is a normal thing to be a young carer and not to be ashamed.