I was only about 11 years old when my mum sat down next to me on the sofa and said “I think I’m going senile.”
I told her to stop being silly. Now I just wish I could go back and give her a cuddle because I honestly didn’t really understand what was going on.
But mum clearly knew that something was seriously wrong. I’m not sure what triggered it. It was just a normal day but she suddenly burst into tears. She was crying her eyes out and I was just sat there next to her not sure what to do.
It was when Christmas came around at home in Amble, Northumberland, that I knew something was seriously wrong. We used to receive about 100 cards from friends and family but when she was writing our cards out she got things wrong.
Instead of, for instance, writing from Anne to Valerie she did the opposite, but when we showed her what she’d done she couldn’t understand what she had done wrong.
That was the main trigger for going to get expert help and going to see a doctor and then she got a dementia diagnosis.
Dad was really good about everything. Not only did he get to the GPs straight away but he then looked after her.
There were lots of obstacles when it came to him being a carer. For example, they were at a motorway service station in the latter stages of mum’s dementia and he had to take her to a disabled toilet and you could tell from people’s looks that they thought it was wrong because ‘they aren’t disabled’ but they couldn’t go to the men’s together, and they couldn’t go to the ladies’ so what were they to do?
There were times when we used to go shopping and she would just make noises and once I remember her screaming and running away from us and everyone was just looking at us thinking we were hurting her because she seemed so scared. That meant it became difficult to go anywhere with her.
She struggled with names. She always used to call people either Gemma or Zoe, who was our dog. Or she would say things like “down the field” because she would go down the back field with the dog. Everything became down the field. Everything was getting all jumbled up.
Towards the end my mum had gone to being like a child. We’d find lots of spoons in her pockets. She’d hide things, like my partner’s car keys which she’d put on her dressing table because she thought they were hers.
She also hid her food. Once we opened a drawer and we found toast in there and she’d poured her tea into it. You didn’t know whether to laugh or cry.
It’s strange because even though her brain was failing her she became quite the expert when it came to being devious. Her brain was working in a different way.
It was a big decision as to whether or not we put mum in a care home but everyone was in agreement that was the best thing to do for her and for my dad for his own health as well because he just couldn’t look after her any more.
She was in care for about two years but my dad looked after her for most of the time. People like him cope but they’re not really coping. They won’t get help because they won’t accept what’s happening to them. They struggle on because they don’t want to let go.
It was all very distressing and very sad but because it was such a gradual process, we all just learned to adapt as we went along.
It was hard at home, but it was hard at school as well because I got bullied. People used to say that my mum was mad because they would see her walking the dog and she would just shout random things that she didn’t mean and didn’t understand.
It was horrible. It didn’t help because you feel lonely enough as it is because most people when they’ve got a wonderful life with a mum, a dad and brothers and sisters they don’t understand what it’s like to be in a situation like mine.
I spoke to my RE teacher, and he got someone in to do a talk to the whole of my year group to help them understand what dementia was all about which helped.
I remember the woman who spoke to us talking about her personal experience and how her mum had left all the gas rings on at home and nearly blew the house up. That’s the story I remember the most but she had quite an impact on everyone.
I see some of the people from school as they’ve supported my fundraising work for the Alzheimer’s Society. Some of them have apologised because they are different people now.
I tried to do my A-levels and stuck at it for my first year but then I wanted out because I couldn’t concentrate so I moved onto a modern apprenticeship in admin. It was tough when I was at school but I’d recommend that anyone going through anything similar to definitely talk about it and let their teachers know what is going on at home.
I’d also recommend putting together a memory box of things that you can go through together with your mum or dad.
I’ve got lots of happy memories of my mum, like going for walks together, but also ones from when we used to clash. She wanted to keep treating me like her little girl but I wanted to dress myself and my tastes didn’t match hers. I rebelled a bit. She wasn’t too happy when I told her I was going to get my ear pierced at the top of my ear.
It was the stuff that is typical of a mother-daughter relationship. It’s because I was her first little girl and I was a premature baby – I was 3lb 12.5 ounces - I remember my mum always being very protective towards me.
It is sad to say but when she died at the age of 64 in 2006, which was just before my 23rd birthday, I thought it was a relief for her because it meant she wasn’t suffering anymore. It’s odd as well because you grieve as you go along because you are losing her as you go along that line and the dementia develops.
I was okay when she died but then about a year afterwards I had a bit of a breakdown. I think you’re trying to be strong for everyone when it is happening and all of a sudden what you’ve been through just really hits you.
Eventually, I decided I wanted to turn all these negatives into positives and I started fundraising for the Alzheimer’s Society and this year I suggested doing a bit walk from Amble to Craster and loads of people said they’d get behind me. So I put my money where my mouth was and then I did a charity music night in Amble which went down well and the band The Britpop Union gave up their services for free. In the end I raised more than £6,000 even though I only initially aimed to bring in £2,000.
It’s been valuable in terms of awareness-raising as well and the amount of people that have come up to me and told me their own dementia-related stories is amazing.
I’ve also changed career from admin to nursing because what happened with my mum showed that I wanted to care for people and make a difference with that experience I’d had. I’m now a staff nurse in Wansbeck Hospital’s critical care unit.
Unfortunately, there is still a stigma attached to dementia but awareness is improving in the community and in hospitals which are now more dementia-friendly. There was a time when most people were scared to admit what was wrong but things are getting better in that respect. People just used to put it down to madness but now there is more acceptance and understanding and hopefully things will continue to improve.
Gemma Little has been hailed as “inspirational” by a national charity chief after raising more than £6,000 for the Alzheimer’s Society.
She was singled out for praise by Alzheimer’s Society chair Dame Gill Morgan when she learned of her fundraising exploits in memory her mother.
Dame Gill said: “Gemma’s dedication and commitment to the fight against dementia has been quite simply inspirational, and what she has achieved is remarkable in more ways than one.
“That is because not only has she has raise valuable funds for the Alzheimer’s Society but also because she has also raised a huge amount of dementia awareness along the way which is invaluable.”
She added: “People like Gemma who give up their own time to raise money for the Alzheimer’s Society are vital to the battle against dementia.
‘It is clear that Gemma knows from personal experience just what a devastating disease dementia can be because it robs people of their lives and has a huge impact on families and loved ones.
“But her response demonstrates we are moving in the right direction so that our communities will become dementia-friendly and that eventually we will win the battle against dementia.”
Pioneering students at a Northumberland school have taken the fight against dementia into new territory with a national first.
Blyth Academy sixth-formers have boosted the battle against the disease by becoming the youngest people in England to be Dementia Friends Champions.
In an unprecedented move, 10 students became the first people who are aged under 18 to become Dementia Friends Champions when they teamed up with Alzheimer’s Society staff at the school.
It is part of an initiative led by the Alzheimer’s Society to create a one-million strong army of Dementia Friends whose greater awareness will enable people with the disease to live well within their communities.
Blyth Academy is part of a special pilot project that has seen 16 and 17-year-olds being trained as Dementia Friends Champions which means they can now lead special awareness sessions for people wanting to join the social movement.