Not long married, Sarah King and her husband were looking forward to a happy family life together. But within a few short years, Andrew was unable to walk, talk or feed himself. In a heartbreaking interview to mark this week’s World Alzheimer’s Day, Sarah tells how early-onset Alzheimer’s stole Andrew away from her at a devastatingly young age – and how proud she is that, despite everything, he still hasn’t given up on life

Then, out of the blue, everything changed. Andrew became depressed. He stopped coping at work: forced to quit his career as a scientist, he took a job stacking supermarket shelves. He kept getting speeding fines and pranging the car; eventually, he wrote it off altogether.

Though neither he nor Sarah knew it, Andrew was showing the signs of early-onset Alzheimer’s. Officially diagnosed five years ago, aged just 43, the decline in his health was swift and sharp: now 48, Andrew is in full-time care. Unable to walk, talk or feed himself, he’s doubly incontinent and can barely move.

“The carers think he still recognises me – apparently he looks round when he hears my voice – but I’m not sure whether he knows me or not,” admits Sarah. “To be honest, Andrew’s quite literally like a big baby.

“When he was diagnosed, we were told he had five to eight years; the five years are already up. Part of me wants him to live forever, and part of me wants it all over with.

“I’m quite scared of what life is going to be like without him: at the moment, my life is structured round him. And then there’s the being a widow thing. … At the moment, no matter how hard things are, I’ve still got a husband.

“It might sound strange, but I’m very proud of Andrew. I’m proud of the fact he’s still hanging in there: he hasn’t given up. And he’s stayed true to the man he was. He was such a lovely, gentle person – and he’s still lovely and gentle now.”

Sarah, who lives in Linton, has decided to share her story with Living to mark World Alzheimer’s Day, the global awareness event which falls next week. “I want people to know that Alzheimer’s affects young people, as well as old. And I want them to realise that it doesn’t just affect individuals, it affects whole families.”

Sarah and Andrew met in 1997. She had moved to Cambridge from her native Devon to work for the Ministry of Defence in Waterbeach. Joining the local branch of the Intervarsity Club, she met Andrew at a social event; despite thinking he was ‘a real scruff bag’, there was an instant attraction.

“I developed a bit of a crush on him,” laughs Sarah. “He came back to mine for coffee one night and we ended up talking about what we were looking for in an ideal partner. We agreed it was a friend who made us laugh.

“After that night, I sent him a silly note. Then I felt a bit embarrassed and was quite prepared to forget all about it.

“But Andrew called me up and said ‘Shall we go for a drink and sort this thing out?’… Six weeks later we were talking about getting engaged.”

The couple went on their first date in the April, got engaged in the July, and by August had moved in together. A fairytale white wedding – at Linton village church, then Chilford Hall – soon followed.

“It all happened quite quickly, yet it felt so natural. I can remember asking one of my friends, when she got married, how she knew her husband was The One. She said ‘You just know’ – and that’s so true. I just knew.

“Andrew had a great sense of humour, a lovely big smile . . .  He was straightforward, honest and kind. He was just such a nice man.”

A year after their marriage, the couple started trying for a baby, but with no success. After having numerous tests, they opted for fertility treatment; undergoing a type of IVF known as ICSI (intracytoplasmic sperm injection), they agreed to have three rounds, stopping when Sarah hit 40.

“Up until I met Andrew I was never bothered about getting married and having children. But meeting him changed all that.”

The first attempt at IVF failed. And then the treatment was put on hold – because Andrew’s health had already begun to deteriorate.

“To start with, we thought he was depressed. His granddad died, and he was very close to his granddad. Then he lost his own father.

“Things were getting harder for him at work. And his driving went a bit funny: there were a lot of wing mirrors being clipped and he got speeding fine after speeding fine – he got three in a row on the Elizabeth Way bridge in Cambridge.

“At the time I remember thinking ‘If you really loved me, you wouldn’t be doing these things’.”

Unable to hold down his high-flying job as a geneticist, Andrew took a job stacking shelves in a supermarket instead. But even that proved too much: the very day he was diagnosed with dementia, bosses called him into an emergency meeting – and said his work was simply not up to scratch, he either had to resign or be sacked.

Having been such a capable man, Sarah says Andrew found losing control over his life, his mind and body very tough at times. “In the end he wrote off the car, so I did all the driving. We’d be going along and he was happy as larry one minute; the next I’d look round and he was in tears.”

It was a letter from Andrew’s mum that ultimately led to the dementia diagnosis. “We went to a family party and he was limping quite badly – the limp was, it turned out, another symptom; a sign that the signals from his brain just weren’t working. She wrote us a letter saying she could see so many worrying changes in him.”

Subsequently referred to the memory clinic at Addenbrooke’s, Andrew underwent a wide range of tests. In   September 2006, doctors said he was suffering from a form of dementia; in November, they confirmed it was early-onset Alzheimer’s disease.

The most common form of dementia, Alzheimer’s is an incurable, degenerative and, ultimately, terminal condition. Caused by so-called ‘plaques’ and ‘tangles’ in the brain – damaged neurons, which lead to the death of brain cells – it results in a raft of symptoms: confusion, memory loss, mood swings, impaired language skills and, eventually, the breakdown of basic bodily functions.

The diagnosis was, says Sarah, a horrible shock. Dealing with her husband’s rapid decline was a challenge, both emotionally and in practical terms. “I was working in London then. Andrew became doubly incontinent and I’d come home at night to find he hadn’t made it to the toilet in time; messes all over the place.

“His behaviour wasn’t always easy. He’d do the most frustrating things. I clearly remember, just before he was diagnosed, yelling at him right in the middle of Saffron Walden. I have no idea what had happened; now I look back and wish like anything I hadn’t yelled…

“It got to the stage where I couldn’t go anywhere, even into the next room, without him following me. And I realised that I couldn’t cope anymore.”

Sarah made the decision for Andrew to go into full-time care. “Leaving him was so hard. It felt like I was leaving a part of myself behind. It took I don’t know how many visits – months and months – for me to be able to drive off without having a little cry in the car.”

Within two years of his diagnosis, Andrew couldn’t walk or feed himself unaided and struggled to speak. Then, two and a half years ago, he stopped being able to eat at all; because of his young age, doctors agreed to fit a feeding tube. “If it wasn’t for the tube, he wouldn’t be here now,” Sarah explains.

Sarah visits Andrew several times a week, every week, despite his March care home being an hour’s drive away. It is, she admits, hard to see him as he is now: a shell of the man he used to be. The impact of Andrew’s illness has been enormous not only for her, but for his whole family – especially his mother and siblings.

As a result of their abandoned IVF treatment, Sarah and Andrew still had two viable embryos on hold. “Andrew always said I should do what I wanted, but I didn’t want to go ahead and try to get pregnant without him; I never wanted to be a parent on my own. So the embryos were donated to stem cell research.

“The fact I won’t ever have children is beginning to feel more real now, not least because I’m about to be 44. I know I’m going to be a widow without any children. I’ll never get to see our children grow up, leave school, get married and become a grandmother.

“For a long time, it’s felt like my life has been on pause. I couldn’t bring myself to sort out his clothes, or clear out any of his things.

“Now I am trying to plan things – go on holiday, go out with friends – and make another life for myself.

“I wouldn’t wish this on anybody, yet I wouldn’t wish for a life without Andrew in it. Nothing changes the fact I’m still very proud to say this wonderful man is my husband.”

http://www.cambridge-news.co.uk/Health-and-Beauty/Andrew-and-me-19092011.htm

By Alice Ryan