The Tears and Heartbreak of Alzheimer’s at Just 46

Thousands of people in the Westcountry have been diagnosed with Alzheimer’s or dementia. While usually associated with older people, for some the condition strikes at an unmercifully young age.

Petra Mann spoke to one woman as she watched Alzheimer’s take hold of her husband when he was aged just 46.

It was the most heart-wrenching moment of Liz Ayre’s life.

And while it was the hardest act she had ever had to perform it was also the kindest.

Leaving husband Mike, 50, at the care home and making the journey home without him took an incredible amount of courage and love.

Cruelly Mike, an actuary, was aged just 46 when he was diagnosed with Alzheimer’s and although Liz had fought hard to keep him at home in Budleigh Salterton, the day she had been dreading had finally arrived. From now on professionals at the home in Axminster would look after Mike whose deteriorating condition now required specialist 24-hour care.

The couple’s two daughters Ciana, 17, and Chrissi, 15, accompanied their mother on the heartbreaking trip.

The mere mention of that day in February this year reduces the 47-year-old to tears.

Liz said: “It was horrible – really horrible. We didn’t tell him what was happening in case he reacted badly. He thought we were simply going to sort out his medication.

“Taking him in and letting the staff take over was awful.

“It was the hardest thing I’ve ever had to do.”

It is a scene all too familiar to many families battling Alzheimer’s in a loved one as the condition callously wipes away memories, mobility and independence and can hit patients in their thirties.

“Up until then I had done all the caring because I wanted to. He’s my husband and I love him. But I was exhausted – often getting by on as little as three or four hours sleep because Mike was agitated and up and about the house.

“I’ve been left with mixed feelings – guilt because I’m not with him all the time but I realise he’s getting the best care which is better for him. The disease makes you feel so helpless because until they find a cure there’s nothing you can do.”

She continues in her devotion to Mike and does her best to visit him every other day. “We have good days and bad days – that’s the best way to describe our lives. On a bad day he won’t recognise the girls or I and they find that particularly upsetting. His mobility is not very good these days so he might not be able to get out of his chair. But on a good day he knows us.

“He has always loved music and enjoys listening to bands of our era including the Sex Pistols and The Cure as well as more modern stuff like Coldplay. We joke and laugh and he still has his dry sense of humour.”

It’s all a very far cry from the early days the couple shared in London.

Their paths first crossed in 1988 in Streatham when they rented flats in the same block and met on the stairs. Devon-born Liz was a 23-year-old working for Qantas in marketing while the 26-year-old Mike was working for Guardian Royal Exchange and studying for his actuary exams.

“I was always out and about enjoying myself and couldn’t understand why he always had his head in his books.”

But within five years they were married and had packed their bags for Hong Kong where Mike had secured a good job. An initial three-year stint turned into six years and Liz and Mike’s daughters were born there.

“We had a fantastic life. It was such an exciting place to live with so much going on. Our social life was vibrant and we were so happy there.”

By 2000 the family was in Devon after Mike got a job with Friends Provident and was now at senior management level. However, after five years with the company redundancy hit and although Mike was one of the unlucky ones, his expertise in the industry saw the firm asking him to a run a major project on a freelance basis.

For many the early signs of Alzheimer’s are not obvious at the time and more often than not they are explained away by a myriad of other causes.

Liz now believes it was at this point things began to slowly slide for Mike.

“He seemed to have lost some of his enthusiasm – he’d always been so enthusiastic about his job and life in general” she said.

“I wasn’t sure if it was the redundancy taking its toll – it wasn’t a huge swing but it was there nonetheless.”

Not even a new job with American firm AIG in Vietnam in 2005 seemed to revive Mike’s earlier zest for his profession or life. The family spent three years in Vietnam during which time Mike became quieter and forgetful.

“He began missing flights which he had never done before and when he popped over to Hong Kong and took a friend out for dinner he couldn’t remember the way to the restaurant even though we’d lived there for years.

“Friends were also beginning to notice the change in him and I knew deep down inside there was something wrong.”

The deep-rooted fear Liz harboured was well-founded because Mike’s mother had suffered with the disease.

Back in England the couple visited their GP who had known Mike for years and he saw a marked change in him.

An MRI scan was swiftly ordered and Mike was diagnosed with Alzheimer’s aged just 46. Liz said she experienced a wash of conflicting emotions.

“It was strange really – while it’s not what you want to hear I felt relieved we at least had a diagnosis – it explained everything,” he said. “So often people don’t get an early diagnosis. At least we knew what we were dealing with. But he was so young to get it. It was just so unfair.”

Mike came out fighting and decided keeping physically fit might give him the best chance of staving off the disease.

Jogging and cycling became a regular part of his day but sadly as the condition worsened he had to stop both.

“The disease seemed to progress very, very, slowly and then all of a sudden by mid-December last year things just spiralled – it was frightening how rapidly it all happened. Mike became agitated and paranoid – kept thinking he was being kidnapped. He couldn’t bear for me to be out of his sight. If I went to the loo he’d follow me. Even if I was in the same room as him and I slipped out of view for a second he’d get upset.”

The mental health care team decided Mike needed to go to a special unit to be assessed – the unit in turn decided it was time for him to go into a care home.

“I still find it hard that Mike is not living with us. This isn’t the way our lives were supposed to be,” said Liz. “But there came a time when Mike’s health had deteriorated so much I couldn’t go on.”

Today Liz is keen to raise awareness about the condition and is urging people to support Alzheimer’s Research UK with donations and fundraising.

Before Mike’s condition plummeted he and Liz would enjoy social evenings at Budleigh Salterton Cricket Club. The club is planning a naked cricketer calendar to raise funds to split between Alzheimer’s Research UK and for its colts teams.

Liz said: “While getting Alzheimer’s at Mike’s age is rare it’s not unheard of.

“He’s in a home where he is the youngest resident by far and it would be marvellous if we had homes where younger people with the disease could be looked after.

“We’ve got an ageing population in this country with people living longer so Alzheimer’s is something that’s likely to touch most of us at some point. I know it’s too late for Mike.

“But we have to do all we can to find a cure to prevent other families going through what we’ve had to endure.”

According to Alzheimer’s Research UK there are more than 12,000 people in Devon living with dementia. More than 200 are aged 30-64, 1,500 between 65-74 and more than 10,000 75 and over. In Cornwall, the figure stands at 8,000, with more than 150 people aged 30-64, more than a 1,000 65-74 and nearly 7,000 75 and above.

Harriet Millward, deputy chief executive at the charity, paid tribute to the family.

She said: “By sharing her story, Liz has highlighted the devastating reality of Alzheimer’s disease and other forms of dementia and the impact it has not just on the individual but the whole family.”

“Early-onset Alzheimer’s is relatively rare and it is tragic that Mike was diagnosed with this devastating disease at just 46.

“Dementia poses one of the greatest threats to public health, but funding for research still lags significantly behind other serious diseases.

“There are 820,000 people across the UK living with dementia today – more than 15,000 under-65s have dementia.

“We rely entirely on our supporters to fund our vital research and Liz has done a tremendous job involving her local community in raising money and awareness.”

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