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The Holiday That Changed Our Lives

Dementia charity helps couple recapture their zest for life
Childhood sweethearts John and Carlene talk about the holiday that changed their lives thanks to Dementia Adventure

Carlene Byland gives her husband John a tender peck on the cheek before settling herself into her armchair. A photobook filled with happy pictures of a recent holiday in Norfolk is open in her lap - a keepsake of the couple's first trip in such a long while.

It was a break they weren't sure they would be able to take because John is living with Parkinson's disease and dementia.

John has been living with Parkinson's for 20 years and was then diagnosed with dementia two years ago. The two combined mean everyday tasks are becoming more and more of a challenge for the 76-year-old. Carlene is now John's full-time carer.

Thinking and reasoning problems are some of the symptoms that can affect people living with Parkinson's disease and dementia. They occur in around a third of those living with this type of dementia, and to what degree varies from person to person.

As the part of the brain affected by Parkinson's disease and dementia gradually changes, some people may experience critical changes in memory, attention, judgement and planning the steps required to complete a task.

For John it means leaving the house without support is now difficult. Impromptu trips are almost impossible. Going anywhere requires planning and thoughtful consideration, and it can be stressful for both John and Carlene.

And so, the prospect of a brief holiday - however much the couple may have wished for one - felt just like that, a dream.

That was until John and Carlene, 73, found out about the incredible work of the charity Dementia Adventure, which went on to help support and part-fund a four-day break for them to the peaceful Norfolk Broads. Two other families also living with a dementia diagnosis joined them.

It was a trip where, in Carlene's words, "John came alive".

A Special Holiday

The childhood sweethearts are sitting across from each other in the home in Kettering, Northants, that they have shared for more than 50 years - a terraced house where they brought up their two children and have welcomed their six grandchildren and 10 great-grandkids. When the conversation turns to their trip, there are smiles all round.

Carlene said, "I don't think I can put into words how special a holiday this was. John lit up. We both did. We hadn't really had a break for years and it just sounded so nice.

"I'll be honest, I was a bit nervous at first and got a bit stressed about it all because it's not just as simple as getting up and going any more. There's always lots to think about and consider and plan with John now. But I honestly needn't have worried. From the moment we left the house, it was like all our cares were left behind."

Dementia Adventure was founded in April 2009 to support people with dementia to get outdoors and experience the benefits of nature. Focusing on the individual rather than the condition, the charity looks at what people can do rather than what they can't and believes that with the right support anything is possible.

Each year Dementia Adventure helps families experience a supported break they may not otherwise be able to take. Players of People's Postcode Lottery have to date raised more than £3 Million to help with the charity's work.

For John and Carlene, both lovers of the sea, Norfolk offered the perfect holiday location.

Carlene said, "It took me a few days to realise just how much I needed a break. It was only when we got there and met the staff and began to relax that it hit me."

Over the years, as John's symptoms have become more severe, everyday tasks such as getting dressed, going for a walk, and pottering in his beloved garden are now only possible with Carlene's help. John's speech has been affected and the former painter and decorator admits he can sometimes become quiet and withdraw into himself. He can no longer manage stairs and relies on a wheelchair to get out and about.

However, during their time away the Dementia Adventure team stepped in to help John take part in various outdoor activities, including a boat trip and a train ride, while Carlene was able to take more of a back seat and recharge too.

John said, "I felt totally at ease and so well cared for. I could sit and enjoy what was going on. I wasn't looking around for Carlene, worried about where she was. I knew she was okay too."

Carlene explained, "They looked after us both. When I got up to help John with his dinner, they just kept saying 'No, you are on holiday too. Let us do that. You just sit and relax.' I didn't have to push a wheelchair once. It was nice for the other partners to talk to each other as well."

The couple love the sea and had even contemplated a move to the coast when their family was younger. But it had been years since they'd been on a beach with the chance to enjoy the sea air. And so a trip to the seaside was extra special. The chance to paddle was "just magical" said Carlene. Entertainment in the evenings included pet therapy sessions and even a choir performance, which proved something of a hit.

Carlene said, "John was joining in the singing. He sang all the time which he rarely does any more. It was so lovely to hear."

She continued, "I noticed such a change in him. He came alive. When we are here at home, it's just us and it's hard not to stagnate. I am always worrying about him. When we go out, I am constantly thinking about him or where things are, looking ahead, planning. It can be stressful. When it's just an ordinary day and we are on our own, you can hardly hear John talk. But when we were away, he wanted to talk."

Peace Of Mind

It wasn't just John and Carlene that felt the benefits of the break. The couple's daughter Greta, 52, noticed an immediate change in them both.

Greta said, "I could tell even in the first days when I spoke to them on the phone. They just said it was amazing. The fact that it was all organised. Someone else had taken on that responsibility. It meant we had peace of mind and weren't worrying.

"When they got back, they had so much to talk about. I help out as much as I can and normally Mum and I have got lists of things to do and organise and there's so much to get on with, there's not a lot of time left just to sit and talk. We can get quite stressed and frustrated that we can't do things quickly enough.

"But to hear them both talking, reeling off names of other couples they'd met or places they'd been - it was more than just a holiday. It was all about them, that is why it was so special."

Postcode Lottery players have been raising funds for Dementia Adventure since 2013 and the charity's Chief Executive Fiona Petit said John and Carlene's positive experience is typical of the holidaymakers they support.

"Evidence shows our supported holidays have significant wellbeing benefits for both the person living with dementia and their companions," Fiona said.

"Families and carers are telling us they need a break now more than ever, so we know our holidays are more than a luxury. They're an essential chance to temporarily lay down your responsibilities, relax, regain your energy, and experience what's still possible for you and the person you care for.

"Holidays shouldn't stop just because of a dementia diagnosis. We believe that with the right support - whether practical, emotional, or financial - anything is possible."

The charity covers as much of the holiday price as possible, even funding them completely for people who can't afford the subsidised prices. On top of that, Dementia Adventure runs online training sessions for friends and family who support someone with dementia, free of charge - something that wouldn't be possible without the generosity of the public. Many people say that these sessions completely change the way they approach caring for their relative with dementia.

Carlene said, "I've told so many people about it. And when I tell them, I say it's made such a difference to our lives. We have made all these new memories. I'm desperate to go again."

And the final word goes to a smiling John.

"It was like we were celebrities, the way we were treated. I think we could maybe manage a couple of weeks next time."

Making A Difference

People's Postcode Lottery players are helping deserving causes like Dementia Adventure make a difference every single day. Read more about the range of Charities that our players support.

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Published: 04/03/2024

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