Figures published by the Alzheimer’s Society report that 800,000 people in the UK have some form of dementia. But spotting the early signs can be tricky.

How can you differentiate between what could just be someone being out of sorts and having a moment of forgetfulness with someone in the early stages of dementia? Tina Dane, 45, experienced this dilemma first hand with her husband Ray, now 51.

Two years on from the diagnosis, Tina is Ray’s full-time carer. She speaks to VANESSA MOON about her journey.

For the last two nights, I have been sleeping on the sofa,” says Tina Dane.

“That’s because Ray doesn’t recognise me as his wife and doesn’t think it right that I share his bed.”

It’s just one of the emotional blows Tina has to cope with day in and day out after becoming full-time carer for her husband of ten years, Ray, who was diagnosed with Alzheimer’s Disease and mixed vascular dementia two years ago.

Aged just 51, Ray’s condition is so fierce that he will soon be classed as being in the late stages of Alzheimer’s Disease and Tina has been forced into looking at nursing homes to look after the full-time care of Raywhile she has some respite.

Tina, 45, says: “It wasn’t my choice. I am happy to care for Ray full time, but the social workers and my family think it’s about time I made some friends. We moved to Colchester two years ago and the only people I know are other carers. Doctors have also indicated I should start thinking about life after Ray.”

It is not the life Tina, or Ray, would have ever imagined for themselves when they met 12 years ago.

Both living in Sudbury and single with children of their own, they met and soon fell in love.

It wasn’t long before the couple brought their families together – Ray with his two sons and one daughter and Tina with her two girls and one son.

Active, healthy and sociable, the couple had lots of friends they regularly socialised with.

Tina was a full-time mum, while Ray was a coach driver with Turners of Essex coach company.

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But just as life started feeling idyllic, tragedy struck.

“I remember the date,” says Tina. “It was August 24, 2009 when Ray suffered a stroke. We didn’t know what was happening at first. He was only in his mid forties.

“We were sitting in the garden, enjoying a drink, when Ray’s mood changed. Ray has never shouted at me or the kids.

He has never been racist or angry to anyone. But he started snapping at everyone. He kept shouting racist remarks over the garden fence to the neighbours. I tried to calm him down and eventually he said he didn’t feel well.

“I sorted the children out for bed and went straight to Ray and saw his mouth had dropped. He was foaming, his armhad seized up and he couldn’t get his words out. It was so frightening. Then he started fitting.”

Tina contacted her daughter, who called the ambulance, and called for a neighbour’s help to put Ray in the recovery position. Then Ray stopped breathing and Tina started chest compressions on him until the paramedics arrived.

Instinct took over, then the shock set in, she says.

It turns out Raywas experiencing post-stroke seizures and could suffer up to 50 in a single day. Now, he can still suffer two to three a day.

For a while, Tina, who had joined Ray working at Turners, went back to work, but when it became clear she would need to care for him full time, she gave up her job.

Ray tried to get on with life, but could no longer work.

With both of them at home, the couple’s home was repossessed and the council rehoused them in Ipswich for a while, before they moved to Colchester permanently.

In that time Ray’s behaviour became unusual, and was steadily getting worse, says Tina.

“He was getting forgetful. We noticed he couldn’t get his words out, they would get muddled. He would put things in silly places. Then he started getting his lefts and rights muddled up. For a career driver that was really odd.

“He would make a cup of tea and bring it to me freezing cold.

Or he would put both tea and coffee in it. Then he started calling me by his ex-partner’s name.”

All the while, Tina thought it was the result of the stroke, and not dementia, so she didn’t think too much about it. Or, she says, she would argue with Ray, something she now knows she should never do. “You can’t reason with people with Alzheimer’s,” says Tina.

Just before the move to Colchester, Tina suffered a stroke herself, leaving her temporarily paralysed, but she slowly recovered, knowing she had to get back to caring for Ray.

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All the while Ray, who visited Tina in hospital, was still showing unusual behaviour and Tina was eventually spurred to seek his GP’s advice.

She says: “They referred me to the Oyster Clinic in Colchester, a mental health clinic, because they initially thought hewas depressed. But a consultant there wasn’t so sure. After tests and scans that went on for four months, the consultant called me at home to give me the news.

“When we went to see the consultant, I had to walk out. I didn’t want Ray to see me upset, but I couldn’t believe it. I was gutted, I was scared, I didn’t knowwhat to say or where to go from there.

“The problem is because he is younger, the Alzheimer’s is progressing quickly. Looking back, all the signs were there.”

Each morning brings new challenges, and a further progression of Alzheimer’s.

Now, their children can’t even look after Ray as he gets upset when Tina is not there.

“Even though he doesn’t recognise me as his wife, he recognises me as the face that is always there. His security blanket that keeps him safe,” says Tina.

“It’s heartbreaking when he doesn’t remember me, but when he does he looks at me and says, I love you. He asked my daughter to buy me a bracelet with those words written on it. He said it was for the days he forgets.”

Tina credits the Alzheimer’s Society for teaching her how to cope emotionally, and how to deal with the demands of being a carer for someone with the disease.

She attends the society’s Carers Information and Support Programme (CrISP) in Colchester, where she says she can shout, cry, and say anything she wants and everyone there can understand.

But she says that she is one of the youngest there. Most carers are much older than her, as are those being cared for.

“They have had a full working life together, spent some of their retirement together. These are things Ray and I will never experience. But you have to get on with it.”

Ray is now completely dependent on Tina. Doctors can not say how much time he has left, butmoving to the latter stages of Alzheimer’smeans he is now losing the use of his muscles which help him swallow. He is also in danger of developing pneumonia from a chest infection.

Tina has installed sensors throughout the house and in the bedroom, so she knows if he has got out of bed or is on the move.

“His latest thing is to go off down the road in his wheelchair,” she says.

“But there are other things. He ordered a television online costing £999. We can’t afford that, but he says we can because we’re both working – but we’re not.

“He will get up at 3am to make tea and toast, because he thinks he’s about to go on a coach tour and has to collect his coach for work. He will put the kettle in the freezer, the sugar bowl in the fridge, and recently, for some reason, he put an ornament with a battery in the microwave.

“My daughter is getting married in seven weeks’ time – it was supposed to be next year, but the doctors said if there is anything we want to do with Ray, now is the time to do it.

“Ray is the only dad she’s known, he brought her up, so she wants him to walk her down the aisle. She bought him some cufflinks, but he’s put them away somewhere and we can’t find them. We’ve been looking for a month.”

Tina says it is hard for people to understand the severity of Ray’s condition, because they are frightened about what to say, or what theymay see. But she urges anyone who even slightly suspects things are not right with a partner or family member to go to their GP.

“Insist it may not be depression. Tell them everything that has been going on, down to the details. Take the support that is offered, because you will need it.

“The Alzheimer’s Society has been my lifeline. Then take each day as it comes.”

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