And the idea was that [name] would start to run a business, a small catering business. And, so, it became apparent almost immediately that he could not operate this business at all. He was very capable and confident doing the front of house. Even the cooking that, it was a small café, even the cooking, he was fine with that. But the, the planning and the organisation of getting the stock in and having the staff, it was just not very good at all. And things proceeded to deteriorate and he was 50, I would say when I was like there is something really not right.

So, he’d tried to drive the wrong, down the wrong side of the road and the children who were quite young were asking me not to send him to pick them up. He’d driven through red lights and when they’d pointed out to him that it, the light was red, he got exceedingly angry and aggressive to the level that they didn’t feel safe in the car.

Yeah, learning support teacher. So, she was, she found it increasingly difficult and then I think they moved, changed her role a bit. But it just didn’t work, so she had, you know, she had to just stop that, sadly and then, you know, it was one thing after another, stopped driving and stopped riding a bicycle. So, life, well, yeah so she was, so that there was just, it just gradually sort of her capacity to do things eroded.

My brother took away loads of paperwork and found that she was in loads of debt. She’s obviously been suffering. I mean we knew that she had debt problems dating back maybe 15 or 18 years. And now we’re wondering if you know, the beginnings of the problems with her brain like the sort of the vessel that became blocked and things. We were wondering if it was taking it’s toll back then because she suddenly became quite debt ridden and finding it hard to work and obviously she would never explain why.

I think a few months before she was diagnosed, she actually got laid off from her work and due to making a lot of mistakes and in hindsight when, when you think about it now, it all makes sense. She did a lot of administrative work and she used to be, they laid her off because she was making errors and things like that. And she didn’t tell anyone for like six months. She used to just pretend to go to work for the day. So, she was very much that kind of person where she was in denial anyway.

I managed to actually speak to her boss like, you know, after she was diagnosed. I said, “This is what’s happened like would you be able to kind of give us some insight into how she behaved at work?” He just said, “She was really erratic and making mistakes and you know, you have to kind of be mentally well to do like administrative.” It was like accounts, an account’s administrative, administrator. And yeah, she just wasn’t, she was just making errors and things like that. So, I mean, it’s understandable that she wouldn’t be able to do it.

Going back and starting from the beginning in hindsight, now the first stage is, is not recognisable I think, or certainly wasn’t recognisable as far as I was concerned initially – which were mainly the behavioural changes that were taking place. And that’s prior to the diagnosis because one is just not aware. And I was certainly not understanding either to acknowledge the fact that my wife was at the beginning of a serious problem, a serious mental health problem.

So that’s, that’s the first stage. Once I realised then, once it was diagnosed then I think that if I sat down and gave it serious consideration I could probably categorise it into three or four stages up to this point’ pre-diagnosis. From the diagnosis a gradual change of the things that were happening, loss of remembering things, loss of names, loss of word recognition, loss of words relative to putting a conversation together, not recognising things in the shop, buying a tube of toothpaste or washing powder every time we went to the shops.

It wasn’t until I went into the cupboard at one stage to get a tube of toothpaste out that I saw that there were seven tubes of toothpaste, new in there. My wife was buying a tube every time she, or virtually every time she went shopping, so there was a lack of recognition of understanding the need for purchasing. She knew we had to have it but she didn’t know wed got sufficient in the home.

She couldn’t recognize her vegetables. I said one evening, she cooked me liver for a meal and I said how nice it was and then I had that for the next three nights on the trot. And so she was obviously trying to please and still understanding that she was pleasing but not understanding the fact that she wouldn’t normally have cooked me liver four nights consecutively.

So I think on hindsight now the changes initially were difficult to recognise, difficult to interpret because you didn’t know there was a problem. Once I knew there was a problem and you began to understand the changes that were taking place and they became more frequently. But because I was with [my wife] continuously I think I was likely to less recognise some of the changes that were taking place than people that saw her less regularly because I was more understanding of the changes and recognising the changes but not always recognising the speed at which some of them were occurring.

One thing I think is important in the early stages of Alzheimer’s is that I think if you are very close to the person, if you’re the wife, the husband or even the mother or the father or the children, you may not notice things as quick as the outsider. I, in fact the first person who I think really saw that something rather strange and perturbing was going on was my present wife who was a great friend of Iris. We, she and her husband and Iris and I had been sort of a foursome wed done a lot of things together and been very close.

And after the death of her husband we saw [present wife] very often and she was extremely kind and helpful. And I think she was the first person to see something was a little unusual in Iris’s behaviour. I think, I think if you’re the wife or the husband on these occasions you tend to take things rather for granted. Even unusual behaviour doesn’t necessarily bother you, you just say oh well that’s the sort of thing he does or she does sometimes.

I think quite rightly [present wife] didn’t say much to me for a while but she once or twice, when we were staying with her, she did mention the fact that she wondered if we, I’d better take Iris to a doctor. I was rather surprised by this.

I mean I, and as our doctor was a busy man and was more concerned naturally with health than with the mental state of the patient, I didn’t do anything until we went in 1995 to Israel to take part in one of those sort of discussions, a general kind of cultural programme. And Iris was always very good on those occasions, she loved talking to people, she loved answering questions, it was her favourite form of participation. She wasn’t so keen on giving a lecture herself, she didn’t have to give a lecture but she would have been excellent at discussion and question answering.

However, on this occasion she was rather, curiously tongue-tied and sometimes unable to see what the questioner was asking and to reply very coherently. I was a bit bothered about this and remembered what [present wife] had said about it not very long before.

And after the programme so to speak, which was not a success from our point of view at all and the Israeli audience got rather sort of restive, bored and a bit impatient. An Israeli author, a very nice man whom I got to know later on came up to me and said ‘Is anything wrong with Iris?’ And I said ‘No, I don’t think so, perhaps shes tired or something. And I then said to Iris ‘Do you think it went badly?’ and to my surprise Iris said ‘No, I thought it went rather well, rather better than usual in some ways. So I didn’t say any more to her.

But when we got back I did think wed better see the doctor. And our doctor didn’t take it very seriously but he said, and we were talking the three of us, he suddenly said to Iris, ‘Iris, who is the prime minister?’ A stock question as I realise later on. Iris looked rather baffled and amused too and said ‘Well I don’t think I know but does it matter?’ And I thought this was a very good reply.

In the early nineties I became aware that my husband was getting a little bit less quick on making decisions or remembering things. He was older than I, so he was then in his seventies, well early seventies, and I just thought oh hes getting on a bit you know. But it was clearly more than that, after a little while I realised.

And he was also becoming increasingly concerned about his eyesight, having lost the sight of one eye during the war, and the other not very good. Looking back I now realise this was because he was beginning not to recognise letters and it was the beginning of him not being able to read signs or the newspaper quickly and things like that. At the time I just thought he was possibly having more problems with his eyes, but this turned out to be, it turned out to be the case but wasn’t related to what I now feel was really wrong with him.

His speech also became very, less clear. Hed always been a very clear and decisive speaker using the right words and, and syntax and everything. So there was, he used to stumble for a word – a perfectly normal word, nothing peculiar – and not being able to grasp what had been said to him very quickly. And after about a year I thought maybe hed had a slight stroke.

So I took him to our GP who sent him to a, I think hes called a geriatrician, who gave him all sorts of tests and came to the fact there was nothing wrong other than the possibility of the beginnings of, dementia. He suggested taking an aspirin every day to stop any deterioration, or help with any deterioration, which he did. And this went on for some years with him getting steadily worse and in the end very much worse.

Looking back why did it take two years of problems? He was diagnosed as having endogenous depression for which he took the appropriate pills. And yes he was depressed but with 20/20 hindsight, why didn’t they look behind what was depressing him, where they would have found classic signs of dementia, the forgetfulness and confusion, particularly losing spatial awareness. Because it turned out that the most significant thing that he couldn’t do was to read the music especially tracking from line to line.

But to go back to the question, why did it take two years, I think for someone aged 50, dementia was not on their agenda, so a whole lot of other things had to be ruled out. Eventually when he went to [town] and got lost driving in familiar surroundings, then that really rang alarm bells and I took him straight off to the doctor again.

The first indication of any problems was probably about nine years ago. Very minor things happened. My wife became less reliable than she had been when asked to do anything. She would cease to, the house, little things in the house were not as clean as they were before. Small things to start with which were noticeable because she had been meticulously clean always.

And then she started to ask me ‘Who was that?’ when wed spoken to someone in the street, someone wed known for years probably but not seen frequently. And then when I tried to explain who they were very often it didn’t seem to ring a bell at all with her.

Then we decided it would be as well to see the GP about all this and the GP suggested that another appointment of about twenty minutes, and he suggested she almost certainly was starting to develop Alzheimer’s disease which was a fear shed had, shed expressed a fear of this, a vague fear previously.

But eventually her behaviour changed, her character changed, she would get up in the middle of the night, put anything on the stove without, without any liquids in it, or plastic items melted and had to be thrown out. She would sit downstairs in a cold house without any heating on; with a little persuasion go back to bed.

All these kind of things went on and on and then she started to go off on, not just wandering, very positively to take herself off to somewhere with intention of going somewhere quite logical but without any hope of achieving the destination because of the distance that was involved. In one case she was setting off to go one hundred and seventy miles – on foot – to, to where she came, the town she came from, which was obviously, the direction was right, she was eight miles away when she was picked up, still going strong but the, it was impossible for her to reach the destination. Anything could have happened to her on the road.

All these, these kind of things went on and on and on, gradually getting worse. She wrote little notes which I found, or kept finding, long, a long time afterwards tucked away’ ‘Whatever’s happening to me? Have I got Alzheimer’s?’ She was very worried about all this and yet she couldn’t really, she didn’t really seem to be able to express them in any detail.

One day she was, we found her tying the gates of an old disused cemetery quite close to home, very overgrown. She knew about this cemetery but she was tying the gates with her, from the inside. And I brought her home and asked her what, what on earth she was really doing and she said ‘I want to die. It was as simple as that. She realised there were big problems coming and she was very worried about it and that’s what she said.

One time my mother decided to go to Australia for Christmas, because Christmas is always a problem in our family with my parents being separated. So, this particular year, I think it was about 1992, mother decided to go to Australia for Christmas to spend Christmas with a nephew, flew out there. Ten days later decided she didn’t like it and was coming home again. So they had to phone us from Australia, to say she was coming back.

We, my sister and I, went to meet her at the Heathrow and she never arrived. So after meeting three planes and she wasn’t on them, we didn’t quite know what to do, so we came back here and I reported her missing to the local police. And the Police said that if we haven’t heard anything in twenty four hours, wed get Interpol. Anyhow, at quarter to five that night, my sister’s daughter phoned and said the British Consul in Athens has found granny, can someone go out and rescue her? I think the cheapest way to go out to Australia was to go to Athens and then change planes.

So I just had to put the phone down, phone Thomas Cooks and say ‘I need to go to Athens tonight. They were absolutely marvellous. I went on the half past eleven plane from Heathrow, picked up the tickets there. But the British Consul couldn’t hang on to her because she had to go to a ‘do’ at the Embassy, and mother wouldn’t go to a hotel. So in the end she put her in an all night police station.

She gave me the address, so when I got to Athens, I grabbed a taxi, showed the taxi driver this address and he took me to this police station. He was very good. He waited to make sure that the police let me in and they had barricaded the door to keep mother in. And so at half past six in the morning I picked her up and we were wandering around Athens trying to look for her suitcase. She couldn’t remember where shed left it.

We didn’t quite know what to do, because Thomas Cook’s said that we could have gone back on the same plane, but they said in case theres a problem, its only an hour and a half turn around, so they booked me back on an afternoon plane.

So, in the end, we went to the Intercontinental, because that was the nearest hotel to the police station, which was £100 a day, and booked a room there. We stayed in that room and then came home that night. But it was marvellous, mother had all her money; she required a coat, apparently, because her luggage had gone missing and she hadn’t got a warm coat, somebody had taken her to a shop to buy one. And she had some sort of story of having been given a night’s stay by strangers, but we never discovered what happened to her hand luggage, and her main luggage turned up three months later.

In the case of my wife and myself we were I suppose, should I say, fortunate in that two of her aunts developed dementia in their 70s so it was not a new experience for us although we never thought that we would be personally involved. But we first noticed it when my wife was driving.

We used to drive down to Spain for the winter and my wife was a very, very good, very confident driver so the way we did it was one of us would drive for 2 hours while the other one would have a snooze in the back seat and that way we used to do the 750 miles down to Malaga very often in a day. And on one occasion fortunately I want snoozing in the back I was sitting in the passenger seat when we came to a large traffic island and my wife suddenly said “Which way do I go round?” and we realised then there was something strange happening and after the next stop and changeover my wife said “I Don’t feel I can drive any more.” That would be in 1991.

Then we didnt think too much about it at the time except that occasionally she said she had wavy lines in front of her eyes which was a type of migraine and it passed if she lay down for a little while but it was evidently something more serious.

And then in I think it would be about October 91, we flew out to Kuala Lumpur to see our son who was working out there and while we were staying there my wife began to lose her way between the block of apartments where we were staying and the restaurant over the road where we used to go to breakfast every morning. We would set off and she want sure which way to turn. So when we got home we talked about this and said you know well this is what happened to Auntie Madge and Auntie Renee wed better do something about it. And my wife said “Yes what do we do?”

I remember the first time my daughter really noticed a problem was we went up to look after their son who was about 2 years old in I think ’95, yes January ’95 while she had her daughter. And [my wife] was still fine for cooking and things like that. I mean I’d married her partly because she was a catering officer! I knew I’d get well looked after!

And [my daughter] said to me after we were staying in the house, after shed come back from the hospital ‘Mum’s saying some peculiar things and her concentration’s going. ‘Oh,’ I said ‘it isn’t just me who has noticed it. My daughter and husband had been to Italy when they were first married, about a year after they were married which would be in about ’86 and we were discussing this. And [my wife] suddenly out of the blue said ‘Oh I remember when we did so and so in Italy,’ and I knew and [my daughter] knew – my daughter – that shed never been to Italy. And that’s where [my daughter] first picked up signs that something wasn’t quite right.

And the other thing that occurred which is so typical I realise now is when she was asked to cook so and so for lunch or do something, a quarter of an hour later shed have to refresh her memory over it, ask [my daughter] again exactly what she wanted. So I suppose ’95, January ’95 we really began to realise that things weren’t going to go back to normal.

But this was I think about four years after the original worry when [my wife] herself had worried about the fact that she was tending to forget birthdays and things like that.

I started to get more involved and I said, I think it was a really awkward conversation to have, but I because I’m the only living relative, no, there’s me and my sister are the two, her two closest living relatives, apart from her cousin and so I kind of wanted to ask, I knew her next of kin ‘cos when she had an accident once I got a call. But I didn’t know who was the Power of Attorney and so it was really awkward and so I knew that I needed to find that out because I’d experienced dementia with my neighbour who lived below me and I could see the early signs and everything. We knew, you know, it was coming.

And so I found out who her Power of Attorney was and then I, she also, I also said to her “Do you have any tests for anything about this memory issues?” And she said, “Yes, she was going to see the doctor.” But she didn’t, she was feeling very worried about it all and not sure if she needed to and just more and more things started happening and I, and I really felt like she needs to, but it’s difficult because I’m not her friend, I’m her daughter, I mean, her niece which is a bit like a daughter ‘cos she hasn’t got children. And so I rang up this phone line that helped and I said, “What can I do at this stage because she’s not recognising it as much of a problem.” They gave me some ideas. So, I bought her like this special clock to bring to her home and it had like and it has like a date, it had the date and the morning or afternoon because I noticed she was getting that muddled up too like she didn’t know whether that, she was sending me all these emails and she would say things, she’d get really muddled up with my sister.