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Illness means I'm fighting to hold everything together

Published date: 18 March 2014 |
Published by: Rhian Waller 
Read more articles by Rhian Waller  Email reporter


 

“I CAN’T write. I’ve forgotten how. I’ve forgotten how to drive a car and ride a bike. I’m changing.”

Chris Roberts, originally of Gronant, is a Purple Angels ambassador who devotes time and effort to raising awareness of a scheme to support sufferers of dementia.

At just 52, it may seem odd that Chris is currently researching rest homes for his own use. But there is good reason.

He said: “It’s hard work just being me. People expect you to be who you are, but I’m constantly fighting to hold everything together.

“The only place I can go is to a rest home, which isn’t ideal, as I will spend my time there with elderly dementia patients. I will be sitting there, looking at my future.

“But there’s nowhere for someone my age to go and I need respite.”

Chris, who now lives in Rhuddlan, was diagnosed with dementia – an illness that slowly reduces cognitive function – after visiting his GP in 2008.

He has emphysema and he initially put the early signs of confusion and forgetfulness down to a lack of oxygen.

He said: “I went to the doctor to talk about my breathing and as an aside I mentioned my memory problems. She picked up on it at once and said ‘no, that’s not right’.

“Six years on and I’m now at the mild-to-moderate stage. I have problems with money – I find it difficult to count my change and I forget faces.

“It’s only when people start talking that I’ll recognise them. I can’t cross the road safely. I forget that I’ve put things on in the house, or that I’ve just eaten.

“There is no cure. There are drugs, but they hold it up rather than stopping it. Eventually, I’ll lose all my recent memories and I will have to go into a home.”

The disease progresses quicker in younger people than in the elderly.

Chris already relies heavily on his family. He said: “My wife Jayne has become my memory. It’s new memories that go first, but practical things go too. I’m finding it increasingly difficult to write my own name.

“My kids have adapted. They’re pretty resilient. I’ve made a point of being open about it. A lot of my close friends are supportive, but some people just don’t know how to deal with it. They don’t know what to say and they don’t understand it.”

Fortunately, there are angels in the area.

The Purple Angel scheme aims to teach people about dementia.

There are a number of Purple Angel Ambassadors in Wrexham, but only one in Flintshire – Ann Farr, 53, a centre manager at Smartcare in Wrexham, who has embarked on a campaign to get Flintshire businesses dementia-aware.

She said: “I got to know a man (not Chris) who lives in Devon who was diagnosed with dementia at 50. He asked me to join the Purple Angels, which was quite an honour.

“What I’m trying to do is make businesses aware of dementia in the community and how it affects people. It’s simple things, like being tolerant and understanding why people behave the way they do.”

One example, she said, was that people with a particular kind of dementia may hesitate while crossing a threshold into a shop if there’s a doormat.

“Their brain won’t register that it’s a doormat. They’ll see a black hole and think they will fall if they step into it.

“Another thing is money. They may not remember to count their change or sort the money out at the till.”

Ms Farr is asking participating businesses to simply read the information she will supply and then they can display the purple angel logo in their windows.

She said: “It’s little things, like noticing if someone has just come into your cafe for lunch, gone out and then come back in to order another meal.

“Staff members can politely remind them that they have already eaten.”

Ann has seen people’s histories gradually stripped away. She said: “You’ll meet people who are essentially living in the 50s. That’s when you get them trying to boil an electric kettle by putting it on a gas hob, because that was how they used to make a cup of tea.

“There are adaptations you can make. There is a tendency for people with dementia to wander, so families can arrange for a GPS system to be set up so they can find the family member.

“There are also little adaptations that can be made. For instance, going back to the kettle problem, you could buy them a whistling kettle. It won’t cure them, but it will deal with that particular issue.”

Chris has also made use of modern technology to battle the illness.

As he finds it increasingly difficult to read, he now listens to audiobooks and writes a blog and poetry by using the Siri app, which takes dictation.

He said: “For me, what dementia awareness is about is simply human consideration. Don’t assume I’m drunk if I’m fiddling with my change. I’m not being rude if I can’t recall who you are.

“It’s also about turning understanding into action. That’s why I go to these events. I can’t just sit around and do nothing.”

For now, Chris is looking at care homes on a short-stay basis, but he is aware that eventually, barring sudden medical advancements, they will become his day-to-day reality.

But he remains in good humour. He said: “I’m lucky I’ve always been a positive person. That’s not to say my family and I haven’t had our dark days.

“My body is quite healthy. It’s going to go on a long time, whether my brain does or not.

“But I prefer to look ahead to what life will bring rather than look back at the life I’ve had.”

For more news from across the region visit newsnorthwales.co.uk

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