Iris, Alzheimer's and us

Ted didn't come with me to see Iris because we thought it would be too upsetting for him.

I didn't recognise a lot in the film, but that's partly because they didn't picked up that anything was wrong with Iris until further down the line. And they were a couple who lived in happy eccentricity anyway.

But I'm like John Bayley in that I'm fairly relaxed about mess. It must be much harder to cope with this disease if you try to keep up appearances.

When she tipped out of the moving car I was amazed - I'd never thought of anything like that happening. I made a mental note to myself to make sure Ted's in his seatbelt, to make sure the central locking is on.

We first noticed that something was up in 1995 when Ted was 57. In a new job as an environmental health officer he started to notice that the chemistry was a bit much. His boss told him once that he'd asked the same question three times in half an hour.

And at home we'd decided to change a cracked loo seat with a wooden one. I got back from work one day and Ted had changed the seat in the loo upstairs instead of the broken one downstairs.

Dazed and confused

When the specialists finally confirmed it was Alzheimer's, Ted decided to take early retirement rather than muddle on at work for another six months or so.

My way of dealing with it is to do stuff with it. I'm a carers' representative on a panel which approves and monitors research projects, and I'm writing an advice booklet for younger people with dementia. After all, for some people this starts in their 40s or 50s.

I also got very keen that Ted should be on Aricept, a drug which eases the symptoms. The health authority wouldn't fund it and so I got my pen out and wrote some letters.

Alzheimer's disease
Most common form of dementia
Early symptoms are loss of short-term memory and disorientation
More than 400,000 sufferers in the UK

He's been on it for three years now and without it, I'm sure he would be much further along the line. He still has total insight into what's going on and how he is.

Although that makes life more painful for Ted, it makes it much easier for me because we're together - Ted hasn't disappeared into his own world.

'Lots of love'

What I've learned is that we can't live the same sort of life. And we have a different set of priorities now - to enjoy life, and not let what's happened and what it's going to be like in the future mess us up for today.

So we throw money at the problem, spending the kids' inheritance. If we want to do something nice, we do it.

We have had to adapt holidays as it would be no good joining a coach tour of 30 or 40 people living out of a suitcase. The last time we did that was five years ago in Poland, and Ted was totally fazed.

Instead we go on barge holidays. Ted can sit and gaze and if I want to be a bit more active I can help with the locks.

We know things are going to be worse. But our basic relationship hasn't changed - there's lots of love and openness. I have thought: 'My goodness, this must be hell if you don't like your husband.'

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