"Amber, why is the kettle not working?"
"Is it plugged in, mum?
"Oh, um, no."
This was that very last thing my mother said to me before our lives changed forever. I was 14.
She'd been away for the weekend with her girlfriends and I'd been staying with my dad. They divorced 11 years prior. Mum called to tell me she was home and asked me a series of seemingly silly questions. I felt something wasn’t right. I argued with my dad until he took me home early.
The back door was open when I got home, I shouted for mum and I got a groan in response. I ran through to the living room where she was fitting violently. I put her in the recovery position and called an ambulance.
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When the doctors suggested a brain scan, deep down I knew exactly what they were going to say – that she had a brain tumour. Pessimistic, but sadly, incredibly realistic. Mum was diagnosed with a left frontal lobe oligodendroglioma which couldn’t be fully removed because of where it was situated, near the brain stem.
School went out of the window at that point. I'd started my GCSEs, but all I wanted was to spend time with my mum. She was very positive to start with, but after a difficult round of radiotherapy, her perseverance waned.
I did everything I could for her – I’d cook and clean, but she was so depressed and confined to her chair. My attendance at school dropped to 33% in my final year.
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At 16, I should have been going out, having fun, kissing boys, focusing on my work and grades. But here I was, frightened to leave the house.
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I went to sixth form to try and do her proud, but the days were long, mum was lonely and the daily routine of cooking and cleaning took over. Soon, I couldn't bear to leave her. She was all I had, and I was trying my hardest to be all that she needed. At 16 years old, I should have been going out, having fun, kissing boys, focusing on my work and grades. But here I was, frightened to leave the house. What if she had a fit? What if she needed a wee? What if she died?
I was admitted to a mental health hospital at 17. I spent three months there while professionals tried to convince me that I needed to come first, that my mother’s illness shouldn’t be the central part of my life.
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Being a young carer is so much more than going through the huge role reversal of becoming the parent in the household. It’s the lack of support. Friends disappear because you spend your time caring. Family can't cope with seeing their loved one so debilitated. It's exhausting.
My outreach mental nurse pushed me to reapply for college. I chose Fashion Design and absolutely fell in love with it. The work was therapeutic. It was part-time so it was manageable, I was home enough to spend the time with my mum that she needed. I was excelling at college, but it was there that I developed an eating disorder. My organs were failing. My bones brittle. My hair falling out in clumps.
I was threatened with a second admission to hospital. I was determined not to become hospitalised, so that I could be there for mum. Instead, I was treated thanks to funding under the Sheffield Eating Disorders Programme.
I had intensive therapy, saw psychiatrists, dietitians, nurses and support workers. I finally began to understand that I mattered, my health was important too. That's when it hit me - I was killing myself over this. I knew mum was going to die, no amount of dedication could change that. I'm the legacy that she has created and I had to preserve that.
Once I got back to a healthy weight and into a routine again, I developed coping strategies. I learned to channel my energies and look after myself.
I chose to go to a local uni so that I could stay with mum, however she was deteriorating rapidly. She needed external care and the agencies weren't able to fund that while I was still living at home. I was forced to move out. I think I needed that, to be pushed into creating my own life. It wasn’t long after then that mum was given two weeks to live and moved into a hospice, it was heart-breaking. We had our final ambulance ride together to the hospice that day.
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Her two weeks of palliative care were soon up, but mum had no intention of going anywhere. She lived the last seven months of her life in a care home where I could visit her. I watched her become a shadow of herself; she couldn't eat, walk, talk or remember what happened yesterday let alone five years ago. She had no idea where she was.
Going to see her was painful. I'd given seven years of my life to care for her, to be all that she needed, and what was it for? Life took both my mum and my teenage years.
When mum finally passed, I wanted to pass with her. She was my purpose in life, she kept me going. But now I can see clearly that I am what my mother left behind, I'm her only child and was her reason for living. I’m working to put the trauma behind me and to move forward, to make her proud. I'm still scarred, but I’m seizing life with both hands and grabbing every opportunity I can to become the very best I can be.
I'm now working in a college that specialises in education for those who haven't had the greatest school experience, if any at all. I'm inspired and studying for my teaching qualification so that I can help those who haven't been able to access the education that everyone deserves. After all, I've been there too.
One of my last happy memories of mum is when I did a charity run in 2011 and she was there, bald after losing her hair on Christmas Eve the year before, but still able to stand and cheer me on. It’s a lovely thing to remember and something I want to do again in the future in her memory.
Amber is supporting Cancer Research UK’s Race for Life in partnership with Tesco. Visit Raceforlife.org for more information.
If you are struggling with an eating disorder, please call Beat on 0808 801 0677. Support and information is available 365 days a year.
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