One Woman On Living With Her Mum’s Dementia Diagnosis Aged Just 11, And How Cupcakes Can Help

Gemma Little, a Nurse from Northumberland, shares her story and a powerful reminder about how taking part in Alzheimer Society’s Cupcake day, June 15th, will help prevent others from experiencing the same devastating loss.

It might sound odd, but when I think back to when dementia first made an appearance in my life, I didn’t actually know what it was. 

That’s because I was only 11 years old when my mam stopped doing the housework, sat next to me on the sofa and just burst into tears. She turned and said “I think I’m going senile.”

I didn’t know what to do or how to react at the time. Being only 11 I didn’t understand why she was so upset and frustrated. I put it down to the generation gap. My mam was 42 when she had me, and I remember she struggled with new technology, like the VCR. I thought this was just frustration at her lack of understanding.

But sadly, my mam was right. She knew something was seriously wrong that day, and the only words that she knew to make sense of what was happening to her were ‘going senile.’

If I knew then what I know now,  I would have handled the situation very differently and sought a GP referral immediately, but hindsight and wisdom are wonderful things.

I brushed it off. But alarm bells started ringing on the run-up to Christmas, when she was writing cards to family and friends. 

Those were the days when everyone sent Christmas cards! We’d get hundreds of them and we’d send loads out too, not just a few like people do now. She’d take over the entire table, get her list out and set about writing them all. It was one of our lovely festive traditions. But something out of the ordinary occurred. 

My Dad noticed she was writing the cards to us, from the people she was supposed to be sending them to.  When he pointed out the error she couldn’t understand what she’d been doing wrong. That was the moment we realised something was really wrong.

Dad took her to the doctors and a diagnosis of Alzheimer’s was made. We were confused! Alzheimer’s, didn’t that just happen to old people?

Seeing my mam develop dementia was hard and I got bullied at school because people didn’t understand the condition and what was happening. They would say ‘your mam’s mad’ and even my friends didn’t understand. I didn’t either in the beginning but I had to learn quickly.

I told one of our teachers, who I had a good rapport with, and he got a in touch with the Alzheimer’s Society. They sent a woman to speak to my year group. Her mother was also living with dementia. She told us how her mam had left the gas hob on and nearly caused an explosion. I remember my peers being shocked and feeling relieved that perhaps finally they understood.  Understood that my mam wasn’t mad, but she had an illness that was robbing her of her memories and life. And me of her. We were having a tough time but that little talk helped. 

My mam died when she was just 64 years old, just before I turned 23. And to be honest I felt devastated, but there was also a sense of relief, because she was no longer suffering. It was a hard time but I was determined to try to turn a negative into a positive.

I started off helping by following in my dad’s footsteps. After my mam’s dementia diagnosis he began to drive a minibus, taking people with dementia and their carers to local activities. I’d be there too looking after my mam, and it was strange because carers would wonder why a young person was tagging along and thought I should pay my own way. Young onset dementia was new to them. 

My Dad is 81 now and he’s doing well. He has had a few of his own health issues but he still lives on his own. He’s made of tough stuff and he’s very independent. He had to give up driving a year ago but he got himself a scooter so he can get around. There’s no stopping him!  

Inspired by him I’ve tried to continue doing my bit.  I started with a few fancy dress sponsored walks. Then in 2014, I set up ‘Save the Memories’, which has helped me raise awareness, support people and generate funds for dementia causes locally and nationally.  As part of this, I’ve organised two large scale coastal memory walks and a charity night, raising almost £14,000.

Now I work as a nurse on an elderly ward, where there are a lot of people with dementia. I love what I do but I am not going to lie, it is not easy job. Hospital stays can cause heightened confusion in people with dementia as it takes them out of their normal, familiar settings. But having that personal experience and understanding helps me to support those people and their families that are affected by dementia.

Losing my mam so young was hard. You see your friends with their mothers enjoying life together and always having someone to look out for them. I miss that and often feel very cheated by life that I never got to experience that. My Dad is great, but there’s no substitute for your mam. Especially when big life events come around. This July I’ll be getting married at Ellingham Hall in Northumberland. It’s been difficult not having her here in the run-up to the wedding. I’ve been doing everything myself, whereas most people would have their mam there to help and advise them. Shopping for my wedding dress was particularly hard. 

My husband-to-be, Andrew, lost his dad to cancer a few years ago and so we’ll have a little table with their photos on to remember them and so they can be part of the day. They can’t be there in person, but they’ll be there in our hearts.

After my mam died I could have turned my back on dementia and got on with life. But what good would that have done?  It would still exist and people would still need support and the hope of a cure. It certainly wouldn’t have helped charities like Alzheimer’s Society,that raise awareness of dementia, support those living with it, as well as trying to find a cure!

That’s why I support the Alzheimer’s Society and their Cupcake Day fundraising campaign. It’s a simple way to help, even when life, and things like wedding planning, get in the way sometimes!

We’re urging everyone to come together on Thursday June 15th and unite against dementia simply by eating cake. Dementia is set to be the 21st century’s biggest killer and it will affect us all in the future. It’s easy to attend or host a cupcake day, and by doing so you can help stop other people from losing their loved ones to this awful disease.

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