After her husband Ted was diagnosed with Alzheimer’s Disease when he was just 57, Angela Clayton-Turner cared for him for nine years before finally relinquishing him to a care home. Maire Bonheim talked to her about changing relationships, public toilets and getting her life back.

“I hate it when people say that caring for a dementia patient is like looking after a child – it’s nothing like that at all!” says Angela Clayton-Turner. “You have a child that comes into the world and is gradually maturing and gaining skills, whereas my husband Ted is a mature and intelligent individual who is gradually disintegrating and losing all the abilities and thought processes he’s gained over time. Alzheimer’s pays no respect to the person that he’s been.”

Angela first noticed that something was wrong over 12 years ago when Ted switched jobs. “I was very worried because it was bizarre, it was as though he couldn’t do the simplest things,” says Angela. “I put it down to the stress of starting a new job. But with the benefit of hindsight I think it was stress on top of the brain pathology that was starting.”

Eventually, Ted admitted that there was a problem and was diagnosed with Alzheimer’s. He was just 57 years old. “It basically came from him, which is quite unusual. A lot of people have to fight to get the person with the problem to face up to it,” says Angela. “But I think Ted had been struggling with some cloudiness in his brain for a while.”

The couple were devastated. “We were very close, so we were able to talk to each other about it, but I do think that however close you are, you each keep the deepest struggles secret inside yourself for fear of upsetting the other person,” she says. “And gradually, you get on with your life.”

At first, things weren’t too bad. Angela could leave Ted at home and continue working for the first few years, and Ted could walk down to the pub or get a bus to visit his daughter in Croydon – although occasionally he’d forget the word for “Croydon” and have to wait for the next bus.

The couple did what they could together within the constraints of the disease. “I modified what I wanted to do and Ted worked in with me,” she says. Angela was also able to continue working until she was 60. “We’re a second marriage and we’d only been married 7 years when this all started, so I wanted to built up as much pension as I could,” she explains. “We’d both been divorced, so that cuts back your finances quite dramatically.”

Angela also had the support of another younger couple she had met through the Alzheimer’s Society. “At the time I needed to be able to talk to someone else in my position, because most people dealing with Alzheimer’s are much older than I was, or else it’s a parent they are thinking about rather than a spouse.”

Ted went with Angela when she did volunteer work. “I needed something to blot out my mind and stop me thinking, and house work doesn’t do that!” says Angela. “So the dust mites made themselves at home and I did the stuff that occupied my mind!” Good for the public as well as the dust mites – Angela is a governor of a mental health trust and has written an information booklet for younger people with dementia.

As the disease progressed, things became more and more difficult. Slowly, Ted lost his ability to read and to concentrate, and began to do everything incredibly slowly. Angela had to remind him when he needed to go to the toilet, unzip him and even wipe his bottom. Before he went into a care home, he also spent restless nights pacing the house, once repeatedly calling out, “Help!”

“These are the things that come into your life in the later stages. We didn’t discuss it, we just got on with it,” she says. “You like to think that you’re a saint and you’re perfect, but the reality is different. I often got tired and impatient,” says Angela. “But we’ve also had a lot of laughs actually – I think a sense of humour is a great help.”

Especially when it comes to toilet situations. Angela describes a series of unfortunate incidents involving Ted getting lost in toilets, Angela emerging from toilets to find Ted has disappeared, angry German men shouting Angela out of men’s toilets and Ted asking shop salesmen to point him towards the ladies’ toilets – all of which would be more funny if they weren’t so sad.

Their relationship gradually changed from an equal partnership to one of dependence, and Ted’s Alzheimer’s grew rapidly worse. Eventually, Angela was advised by her doctor to put Ted into a care home. And after a lengthy and difficult period in a dementia ward, she was forced to do just that.

“It was an awful decision to have to make,” she says. “I will never know to this day how much was the fault of the disease getting worse, the environment at the dementia ward or the medication that they put him on, but it was like falling off a precipice. He got steadily worse and worse,” she sighs. Ted left the dementia ward and began pacing the corridors at the care home instead, and Angela doesn’t believe he noticed the difference.

The stress took its toll on her health and made her physically weak and ill. “I’m a pretty robust person, but I could not believe how much I cried in 2005,” she says. “I cried at the drop of a hat. They say that crying is good but it can’t be good to cry as much as I cried that year. I didn’t look in the mirror much, but when I did my eyes were dull and red and swollen. I have the life back in my eyes now, but for the whole of that year they were dull and lifeless.”

There were struggles over medications – Angela didn’t want Ted to go onto anti-psychotics but in the end had no choice. “He never hit me, but he did hit when he first went into the dementia assessment ward – he’d hit, bite, pinch, scratch, spit and he started having fits. It’s horrid, but it’s the disease.”

After one of these fits, Ted ended up in a general ward and Angela found that even among healthcare professionals, Alzheimer’s is often ignored or misunderstood. “They just had no idea about dementia!” she says. “I looked at his assessment form and it had a line straight through it saying that he wouldn’t co operate. They had no idea that he was unable to understand, or how to handle him. They didn’t even try basic ideas to encourage him.”

Ted may soon need an operation, and Angela fears that she will practically have to live at the hospital to ensure that he gets food and the sort of care that he needs.

Now that he’s in the care home, people have said to Angela that she has her life back – but that’s not how she sees it. “When I was caring for Ted I was able to build my life around that,” she says. “I was able to go to work, I was able to do some volunteer work, we had a social life and we had holidays.”

Now, Ted is completely immobile and almost mute. “You know, he’s gone!” says Angela. “I can’t have a conversation with him, I usually visit him at lunch time so I can feed him, because otherwise I just sit there holding his hand – there’s not much else I can do.”

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