Scotland

My story: Living with dementia

Image caption The Duke and Duchess of Hamilton pictured during happier times

Angus Alan Douglas-Hamilton, the 15th Duke of Hamilton, died this year after suffering from vascular dementia for several years.

His wife, Kay Hamilton, is now spearheading a £1.5m appeal by Alzheimer Scotland to place a specialist dementia nurse in every health board.

Lady Hamilton spoke to BBC Scotland's news website to tell the story of her husband's illness and its progression until his death at the age of 71 in June, 2010.

"Angus was bright - he was always on the go. He would never have a seat of his own in the house. He was always perched somewhere, full of energy and very, very intelligent. He was great fun - a super person.

He wasn't your typical Duke. Someone once asked him, 'How do I address a Duke?' and he said, 'I don't know - I don't mix with men'.

But gradually, I think it may be even as early as 2003, I knew there was something [wrong] and so did he.

At first I wasn't sure - for a while I thought he was just trying to push things on to me - 'Kay, where is such and such? Kay, where are my keys? I've lost them'.

Then it got to the point where somebody would say, 'Did you ever visit such-and-such a country or a town?' and he would say 'No'. And I would think - yes, you have.

'Gradual decline'

And gradually it got worse. In 2004, I think it was, we went out for a meal. I'd arranged to take him out to broach the subject.

Before I could say anything, he said, 'It's not going to get any better is it?' I asked, 'What?' and he said, 'My memory'. I said, 'So you know' and he replied, 'Of course I know'.

He was becoming irritable because he was trying all the time to improve his memory. He didn't know what was happening. I said, 'It could be anything, Angus - it doesn't need to be a malignancy but you could have a tumour, something pressing on an artery'.

We went to the doctors and we did every test under the sun - and nothing.

He would take what I called grey turns where he would suddenly go very, very pale and feel very nauseous. He was never sick but had this terrible nausea and he would have to sit down or even lie down. Ten minutes and it would pass - and he wouldn't even remember he'd had one.

Well, I thought this must be little transient ischemic attacks - TIAs they're called - but nobody ever confirmed that. But I am still convinced that those took away some of his memory, bit by bit.

In 2007, he wrote a letter to his trustees and directors and it stated that he had Alzheimer's. It had been diagnosed by this time.

He could still make decisions. Tell him a problem and he could give the answer. But he needed accurate minutes kept because he would not remember having been asked the question.

But he said, 'I am Angus Hamilton and I always will be'.

That was one of the most important things to say. They don't change - they are still the same person, perhaps even when they are not knowing people. They are locked in this world.

Angus was fortunate or unfortunate - I don't know. He never forgot who we were, though at times he might forget momentarily. But he always knew his loved ones.

Image caption The Duke could remember the Greek alphabet, despite his illness

Towards the end, he couldn't use a computer, he couldn't read, he couldn't find things.

And yet about six months before he died, someone asked him, 'What's the letter such-and-such in Greek?', and he wrote out the alphabet. So how does that work? I don't know.

He was admitted to a mental hospital - I can't say too much about this except that it was a very bad experience.

He was admitted - and controlled. We thought he was going in for 48 hours to be assessed. But [after a few days] he could barely walk and he was shaking and his speech was affected. They sectioned him but I managed to get him out on the fifth day.

In September [2009], he had a fractured leg and was admitted to the acute ward - and that was a huge problem. The first thing that happened was the admission to accident and emergency, which was good.

Then in the ward - we couldn't stay overnight - I said, 'Can I come in first thing in the morning before he goes down to theatre? It will calm him and make it easier for all of you'. [They said] 'No'. But I did go anyway and nobody threw me out - so he was very calm before the op.

'Strong man'

He came home and recovered wonderfully. He was a big strong man but over six months his condition started to deteriorate so much. He didn't want to go far from home - he didn't really want to go out in a car.

Gradually - so gradually that I can't actually remember everything that happened - he deteriorated and in the end he couldn't swallow. He had vascular dementia and that stopped him from being able to swallow properly. ..

And he knew three days before he died...he said, 'I think I will be dead'. It was as if he had given up. He was in bed three days, that's all.

When he was walking around, it was fine - I was prepared for it. I wasn't expecting him to die soon. This house was organised so we could care for him at home whatever happened. But when he stopped drinking, being able to swallow.

We slept together the last night...every night. We could lie together that night and [I could] tell him not to be frightened...we can never be separated because we can't.

'Terrible memories'

Afterwards, you are left with these terrible memories.

I know people say you get through it - and you do. The memories are there but the memories of happy times come back, so it is not the end of the world. And the one thing that helps me is to say I will do my damnedest to stop it happening to others.

I was a hospice nurse until 1990. I wasn't trained in dementia. We didn't call it that. We just said they were old folk, a bit confused. But it wasn't the good old days because I can remember patients with dementia being tied into the bed, with bandages around the wrists and tied on to the bedside.

I do think we have progressed since then. I suppose instead of the bandages we now have the cosh drugs.

We need early diagnosis of the patient with dementia, if we can. We need the services that are available to be linked up - people don't know how to apply for the benefits they could have.

We need these dementia nurses to help in the acute wards to teach the staff to do things, how to handle situations.

We need them there to assess the patient and listen to the carers.

My husband always said, 'That's why you have two ears and one mouth - listen more than you talk'. Mind you, he didn't always do that!"

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