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My Mother Was Diagnosed With Dementia aged 29

Sometimes we have to write stories that stay with you forever. Gemma’s mum developed dementia was Gemma was just six years old. Zoe remains the UK’s youngest dementia diagnosis. Gemma and her younger sister Louise are absolute gems and stuck together when they were young and their mum was taken into hospital. Gemma spent her childhood acting as a surrogate mum to her little sister and now, the young women are best friends as well as sisters. 

Their story is heartbreaking, but beautiful too, as Gemma guides us through the pain of watching her mum suffer, while also figuring out how she’d cope AND be a rock to her little sis.
You can read more about Gemma’s story, featured here in New! Magazine, here.

The global number of dementia sufferers is expected to treble to 135m by 2050. A new diagnosis happens every four seconds.
Gemma, 20, lost her mum to dementia when she was just eight years old. Her mum is the UK’s youngest sufferer… Gemma talks about the impact of dementia on the family.
Gemma explains:
Every time I hear Madonna on the radio, I’m reminded of the good old days – Mum loved Madonna and was always playing her songs.
When Mum gave birth to my little sister, Louise, now 16, I was so happy. I was Pumba, she was Timon – from the Lion King. It was my job to look out for her.
I remember the day Mum was taken away in an ambulance. She’d been acting strange for a while, forgetting things.
She started shouting and pacing around the house. She was always so calm, it was totally out of character. I was six years old and it frightened me, watching her seem so out of her mind.
We visited her in hospital.
‘Why am I here? I want to come home,’ Mum cried.
I thought she’d come home. But she never did. She was diagnosed with dementia when she was 29. The youngest person to be diagnosed in the UK.
Mum faded away. Pretty soon she didn’t recognise us. She’s no longer the beautiful, smiling woman she once was. She can’t move, she can’t speak or hear. She is waiting to die.
Without Mum around, it was my job to bring up Louise. She was my whole world.
I taught her how to ride her bike, how to tie her shoelaces. I plastered her knees when she fell over and watched her win races on sports day.
I was only four years older than her, but I knew the loneliness in not having a mum around, and I wanted to take that pain away for Louise.
We’ve both had to grow up so fast. Our friends can’t work their washing machines – I’ve been doing that since I was eight years old. They complain about their mothers and I think to myself, you don’t know how lucky you are.
I’d give anything for one shopping trip with my mum. For Mum to fuss over my outfit or tell me I have to be home by midnight. Those little moments are lost forever.
I visit Mum in her care home because I love her. She’s an empty shell. She can’t walk or talk, she doesn’t know I’m there. There is nothing left of her – all that can happen now is death.
Some people have stopped visiting Mum. Louise finds it especially hard to see her in this state. But I know if it was me dying in that hospital bed, Mum would visit. I’d rather have these terrible memories than none at all.
Living with dementia in the family has been heartbreaking, but it’s made me who I am. I live for the day because I don’t know what tomorrow brings. Louise or I could develop dementia early too.
We’re determined to live wonderful lives because we know it can all fade in an instant. I might not have a ‘mum’ in the conventional sense, but I have a mum of sorts, and for that I’m grateful every day.