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Living with Alzheimer’s is so hard, but you needn’t be alone

Gemma at about four years old and her mother Anne Little
Picture Jane Coltman

Gemma at about four years old and her mother Anne Little Picture Jane Coltman

To help promote Dementia Awareness Week, which started on Sunday and runs until Saturday, Gazette reporter James Willoughby met two Amble women who have lost loved ones who suffered from the disease. In Northumberland alone, there are thought to be about 4,844 people living with the condition.

For Gemma Little, the decision to become a nurse and care for others was a simple one, inspired by one special woman – her mother.

Gemma was just 22 when mother Anne died, aged 64. But in Gemma’s own words, she lost her mum years before that.

A decade earlier, Anne was diagnosed with Alzheimer’s disease, which is the most common form of dementia.

Life was to change.

Gemma, who was around 11-years-old when her mum received the devastating news, said: “My family helplessly watched my mam disappear over 10 years because of Alzheimer’s disease. Watching the person you love go through this is so tough.

“It is a debilitating disease and my family watched her memories, mind and life disappear before our eyes.

“I wish so much in the world that my mam could be there when I get married and have children, but she cannot.

“I know that Alzheimer’s took this away from her and us. It robbed her of her memories and robbed us all of making more.”

In hindsight, Gemma, 30, admits that there were tell-tale signs of her mother’s deteriorating state before she was diagnosed with Alzheimer’s.

But it wasn’t until an incident in the run-up to Christmas in the mid-1990s which made Anne go to her GP.

Gemma said: “My mam was writing Christmas cards and got muddled up, but she could not see her mistakes.

“Looking back, there were signs, but being young I never picked up on them. I thought it was my mam and the generation gap. I thought she just didn’t get things as she was older.

“One day she had been doing the housework and she sat on the sofa next to me as I was watching kids’ TV and she turned to me, her eyes full of tears and said ‘Gemma I think I am going senile’.

“I told her to stop being silly as that was what older people got. If I had known then what was ahead of us, I would have given her the biggest cuddle and told her how much I loved her and we would get through this.”

Her mum’s decline was gradual over the course of the 10 years, until her death in September 2006 – shortly before Gemma’s 23rd birthday the following month.

Gemma admits that life was tough after her mum’s diagnosis, especially as she became a carer at a very young age.

She said: “There was only my mam, dad and myself that lived at home as my brothers and sisters had their own places.

“My dad was great with my mam but he was her carer and all of a sudden I had to grow up. I had to become a carer too and my dad had to take on both parental roles.

“I battled through school which was hard as people didn’t understand and peers used to taunt me saying ‘your mam’s mad’. I did feel alone.”

Gemma had a social worker and a teacher at her school – the town’s Coquet High – did bring in a speaker to talk about Alzheimer’s.

But for a young girl growing up, it was a daunting situation to cope with.

She said: “When my mam’s memory was failing and she was misplacing items and you couldn’t ask her where they were, it was frustrating for us all.

“It was hard not to get frustrated with her as it wasn’t her fault, but try telling a teenager that.

“I’d get angry with the world as it didn’t understand what we were going through. Why did it have to happen to my mam? She wasn’t old enough to have dementia.

“I needed her to tell me it was going to be okay, to tell the bullies to go away. I needed her to help me grow into a woman, I needed her there when I wanted to talk about clothes, make-up, boys and school discos.

“She wasn’t there. But I knew she would be, if she could.

“There were times when I was really low and didn’t think I could keep going on, but I found strength from within and with the support of my friends and family I kept battling on.”

Gemma says that the experience has made her a stronger person. She is keen to pass on knowledge to other people and, in keeping with Dementia Awareness Week, she has urged people to see a GP if they are worried.

She is also desperate to dispel the common misconception that dementia only affects older people. Her mum, after all, was only 54 when she was diagnosed.

She said: “If anything good can come from such a loss it would be that I can help people who are going through similar experiences to cope and understand, to let people know that there are people that understand and that they don’t have to be alone.

“This disease can affect anyone, at any age, not just the older generation. Terry Pratchett, the world-wide famous author with a magnificent mind, is a sufferer and is leading a campaign to not let this disease be the ‘forgotten’ disease.”

Gemma, a staff nurse at Wansbeck General Hospital, has passed on a number of tips to children who are coping with a parent’s dementia.

She said: “Do as much together as you can in the early stages. Unfortunately you can’t change the diagnosis, no matter how angry you may be, but make the most of the time you have to create some happy memories.

“Speak to each other as a family and help each other. Write a memory book while possible of all the memories of your parent. Put in the stories they tell you of them when they were little and when you were little and refer to this when their memory is failing them.

“Don’t get angry with your parent as they are scared and frustrated that they can’t remember. Be there for them.

“And if they keep repeating a story, just go with it.

“Don’t belittle them by telling them that you have already heard it. This just doesn’t help anyone and just causes friction and frustration.

“My mam called everyone Gemma or Zoe (the dog), but don’t be offended if they use the wrong name. It’s not that they have forgotten you, it is just that their memory is not retrieving as it should.

“Also, confide in your friends.”

Gemma is an active fund-raiser for the Alzheimer’s Society, which is the leading UK care and research charity for people with this disease and other dementias, their families and carers.

This year, she is planning two money-making events for the cause, starting with a sponsored walk from Craster to Amble on Saturday, August 2.

The meet time at Craster is 9am and anyone is welcome to take part. For more information and to enter, email Gemma at xdreamqueenx@hotmail.com

This will be followed by a charity night at Amble Bede Street Club on Saturday, October 4, which will feature music from local band, The Britpop Union. Tickets are not yet on sale. Anyone interested in donating raffle prizes should email Gemma.

People can also donate to the Alzheimer’s Society via Gemma’s justgiving account at justgiving.com/Gemma-Little-xxx

Gemma added: “Alzheimer’s slowly robbed my mam of her memories and her life. I want to raise awareness and funds in her honour to help others cope with and fight this.

“I know that when my family were going through this tough time the Alzheimer’s Society in our local area was brilliant.

“They used to take my mam out for the day and stimulate her mind by going on day trips or to the centre to make things. This in turn helped us to do every day things such as shopping which became a struggle as my mam deteriorated.”

Gemma has also set up a Facebook page – called Save the Memories – designed at raising awareness of the disease and encouraging people to post memories of their loved ones.

 

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