Tiana's story

Tiana is 17 and a young carer to mum Anne who has young onset dementia and Multiple Sclerosis (MS).  She also works full time as a sales advisor and cares for younger sister Evie age 7.  

Daily caring tasks for Tiana include helping her mum get dressed, washed, ready for bed and generally helping her around the house.

Finding out

'I had never heard of dementia or MS before my mum got ill, so when she first received her diagnosis we were all so shocked and no one could accept it.  We just couldn’t understand how mum could have dementia at her age - she was only 46 - we thought it was an older person’s illness.  We had not even considered dementia to be a possibility, but when we looked into it we realised that mum had a lot of the symptoms and were concerned for her future. 

'We talked a lot in the beginning about how our lives would change and what the future would hold for all of us.  Mum believed it was important that our lives would not change dramatically, and Evie and I still had our lives to maintain.  Provision was made that mum would have time with her friends so I could still have space and time to myself.

Understanding

'Being a young carer can be hard, especially when you're at school.  My family and I weren’t the only people who disbelieved my mum’s diagnosis.  I was often called a liar at school which was very hurtful, but that is a reflection of society’s perception that dementia only occurs in old age.

'In the beginning I found it difficult to make my teachers aware of my mum’s conditions and of my caring role.  I didn’t think they would understand but they did, and they referred me to Barnardo’s Young Carers who have given me brilliant support.  They have been a life line.  They discussed my emotions as well as explaining the practical side of dementia which I often struggled to understand. While not everyone I meet understands a diagnosis of dementia, they appreciate that I am a young carer and are understanding to my role.

Not always easy…

'There have been times when I have found it tough to be a carer, for example, on one occasion I’ve had to go with my mum to the hospital via ambulance in the middle of the night and still get my little sister ready and to school the next morning.

'The stigma of dementia is a huge obstacle, not only for me, but in our society.  Some people can be hurtful when my mum repeats herself or is forgetful.  These are just the typical symptoms of dementia.  Previously this would have angered me, however my mum is still able to teach me and has taught me to explain dementia to them and that we must live for the moment making every moment count.  Despite the hard times, we are happy and a very close family.

No price on appreciation 

'I know that I am doing my best for my mum by caring for her and I know how much she appreciates it.  It is also good that mum can get help and support from Dementia NI, a charity that she is involved in that aims to raise awareness of dementia.  She has met many friends through the empowerment group which allows her to maintain her independence while being part of something that she is passionate about.

Life changing 

'My life has changed greatly since I’ve started caring for my mum, for many reasons. While I have had to grow up faster than my peers, I have developed and built an awareness of how to help others and met loads of people in a similar position to myself who I can now call friends.

'Every day I am grateful that it is me looking after my mum and not someone else – it is one less worry I can take away from her and we get to spend lots of time together.

'Through caring for Mum our relationship has become stronger than ever, she isn’t just my mum, she is my friend.  I have also developed as a person through my caring role in that I have much more understanding and empathy for others.

'The day will come when I wake up one morning and my mum won’t recognise me. I know that she will be very afraid and I certainly don’t look forward to that, but for now we are enjoying the time we have together and taking each day as it comes.'

- Tiana and her family live in Belfast, Northern Ireland.  

- With thanks to the Public Health Agency for their collaboration.  For more information on the Still Me campaign produced by the PHA visit www.nidirect.gov.uk/dementia

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