Arti Dasani is 24, has Charcot-Marie-Tooth disease (CMT) and recently graduated with a degree in Games Modelling, Animation and Effects. She would eventually like to go on to run her own graphic design business and is currently doing work experience with the Trailblazers team in the Moving Up project to provide her with more office based skills. She writes about her first experiences with professional care and offers advice for other young people considering applying for a carer.
When I has first got a carer who wasn’t my mum I was very nervous as I didn’t know who it would be. Since a very young age confidence and body confidence has always been a struggle. When I found out it was my first day that I would be receiving a carer my anxiety kicked in and I was not prepared for it at all. They were lovely but it still took me a lot of time to get used to it all. I was so used to relying on my mum and her helping me that even when the carer was with me I would still shout out for her. I never knew it would be that difficult for me to have the support I needed.
There are many advantages as well as disadvantages to having paid carers and sometimes it can get very difficult. As I got comfortable and used to a carer, something would always go wrong. I would either have to say my goodbyes or hello to a new carer because they were leaving. Due to my confidence this really upset me and I would get angry and frustrated. I never liked to get like that as I knew it was what it was. Also, when I turned 18 I had to go through the transition process of going into the adults’ team. It was so difficult to have a set time with the carers as they would have only an hour or two. I would find it difficult to wake up on time and I didn’t want to waste the carer’s time.
However there were advantages to having carers as well. My mum always looked after my father, myself and my two other sisters. She was always on the go...for us all. But when my dad got carers, then my younger sister and then myself, I was so happy because my mum was able to have a break and I wouldn’t have to keep on relying on her every morning. She would not be so tired. I gradually became more independent and I was able to help her as much as I could. As a young person I was so happy I was building up my confidence and was getting into a routine with my carers. I had a set wake up routine too so my mum wouldn’t have to shout ‘Artiiiiiii get up! Its 12pm!’ from the bottom of the stairs!
The advice I would give to other young people who are considering to get a carer/carers is ‘GO FOR IT’ - it’ll be a decision you will never regret. You will gain so much independence that you’ll be making not only yourself proud but your parents, carer or guardian will be over the moon to see your progress. Even though you need that little bit of help there is no harm for asking for help you’re eligible for. As well as this you may make a new friend... well that’s what I call my carer... they are like my long lost friends who always make me happy, comfortable and are so supportive. When I don’t get to see one of them I miss them so much. And I always love the hugs with a good morning!
If you've read Arti's blog and are interested in finding out about your care options please contact the Muscular Dystrophy UK information helpline on 0800 652 6352. If you're interested in applying for work experience through Moving Up please contact MovingUp@musculardystrophyuk.org or fill in our application form here.