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.

I actually came off them in September so I took them for just under a year. and I can’t honestly say that I found them to be, to have a discernible impact beyond, they definitely had an impact but I think their biggest impact was psychological I felt a kind of, a nervousness around taking them initially in the sense that this is a really powerful drug I felt a very initial kind of high followed by a kind of low but I can’t honestly separate out whether that was the way I was thinking and therefore feeling it or whether that was actually what was going on in a kind of chemical level.

I remember feeling quite kind of stressed out at the time that if I missed, because I was, I was sort of sustaining a working environment and I was feeling like I was making progress through the kind of therapeutic work that I was doing and I was very concerned always that if I missed the day of the pill that I would nosedive and that, you know I didn’t, I had no way of gauging what was making me feel better, you know, was it the pills, was it the psychotherapy that I was doing was it my circumstances, what was it I didn’t know and pills were at that moment part of that mix and I’d always felt quite uncomfortable by the fact that antidepressants where often prescribed and then you just continue on them for long periods of time, my sister’s been on antidepressants for almost ten years and there’s something deeply unsatisfactory about that to my mind.

So I was as I say I didn’t know if it was part of, what part of the mix was helping me, I had a sense that it was the discussions I was having through the therapy but I didn’t really know so over the summer when I wasn’t working because I had the summer off I felt, I’d felt better for a fairly sustained period of time, certainly compared to how I was feeling so I decided I would come off them and I had quite a lot of trepidation and as it turned out I came off them and I was absolutely fine I really was, there was, I did a kind of over a period of a month I went from 50 milligrams to 25 so I was alternating days but the main feeling that I had was a fear that if I come off them it was a kind of psychological almost like a sort of dependency, like the only reason I’m feeling okay is because of this pill, it’s a kind of external sort of feeling. And I felt that and I was actually kind of possibility quite negative because I wasn’t taking responsibility for my own health in a way, or my own.

What just that reliance on a pill?

Yes just like I’ve now, I’ve come to a point where I’ve sort of stopped engaging with how I might feel and I’m just kind of now saying this pill will just kind of get me through the day and then I developed a fear whereby I would be like if I stop taking this pill I’m not going to, I’m going to be back where I was which is quite a disempowering thing in that, in the way that I sort of experienced it and felt it.

The psychiatrist that I saw I was quite resistant too and I thought that he was making some snap decisions he initially thought I had, well he, I was definitely emotionally dysfunctional so he initially said bipolar disorder but I was, couldn’t accept that as a diagnosis, I just said No I’ve got the divorce, I’ve got this shitty situation at work, it’s not that – it’s the situation I’m in, it’s not me – it’s all these things I’m having to deal with,’ and so he wanted me to go on olanzapine and lithium and I have a friend who’s on lithium clinical trial and I didn’t want to touch the stuff so I said no because I want to look at what the toxicological l issues are, I want to look at the side effects, you’ve not taken my blood pressure, I’m feeling quite wired and tense, I probably have got high blood pressure, you know. There’s all these physical things you haven’t, nobody’s looked at and also I had had no periods for like two months so I said maybe this is menopause, nobody’s looking into this. and I had also had my breasts were making milk a little bit as I had a three year old, my son was three at the time but I had stopped breast feeding at six months so it was all a bit peculiar that my breasts were making milk. So I said all of these things should be looked at because I could be physically ill or it could be a hormonal thing. And so I was bit challenging to the psychiatrist which I think he didn’t really appreciate.

This has escalated so quickly and had been so extreme. And I mean that episode still haunts me to this day, how quickly something, your liberty can be taken away, shocking, shocking, absolutely shocking. I actually believe it’s against the law what they did, you know, because I didn’t really feel like I got any consenting. It was just like you’re ill we’re having you that’s basically the way it was handled, and then we’ll put you in a place that isn’t even therapeutic, you know, I would have been better off at home with my parents pissing off and leaving me alone, you know, that’s basically what would have been better for me. And some were all being sent on a nice little holiday to a hotel somewhere in the countryside, that would have been therapeutic, this was not therapeutic, it was prison; I was in prison as far as I’m concerned. So if you, if I have any advice to anybody it’s like take super care of the power that the psychiatrist has because I had no concept that this was, if I’d, if I’d said to the psychiatrist I don’t believe your diagnosis, I don’t want to take your medicine I didn’t know that he could do that to me, you know, absolutely shocking.

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.

But what I realised with bulimia was that, you know when I was ill with anorexia you know, they all sort of, like they, oh there was so much more help available, and when I was trying to get help for bulimia it just wasn’t any sort of availability, there wasn’t any services, there weren’t any resources, there wasn’t nothing, and so I found it really like angry and frustrated like. You know I’m, I may seem okay but really I’m struggling.

And I just think there should be something for people that are suffering with bulimia, because it is kind of hard to break that cycle of the whole binging and purging, and I know if you’ve not got the support at home, and you’ve not got anyone you know sitting you down with meals and afterwards, it can be quite hard to not do it, so I think even if like some sort of outpatients sort of help, like you know go for your meals or, but I don’t, if there isn’t, well not where I live there isn’t, I’m not sure about the rest of the country.

No well if I tell you that this is a man who last winter fractured his ankle so badly that his foot was facing the wrong way and didn’t want to have a plaster cast.

Oh gosh.

And in fact insisted that they took the plaster cast off and he just stood up kind of thing and thought he could go back to work. He doesn’t do medication, he doesn’t do doctors, he doesn’t do, all of that with [husband] is a sign of weakness, and it’s a sign of frailty that doesn’t feature in his being. so again I think, interesting I wonder if I dare ask him, not dare ask him but would I bother.

Would you have the conversation?

What did he think about me still being on tablets? I don’t think I’ve ever asked him no I don’t know, I don’t know.

Is it something that you very much keep for yourself?

Well it’s just, it’s just me.

You know that

He would pick them up from the doctors for me if he was going past, he would say to me, you know, next week when we are packing to go to [European city] he’d say, you know, have you remembered your tablets, you know. It’s not a bone of contention between us it’s not something that causes problems or it’s just.

That’s his way.

That’s his view of life, that’s his, that’s what makes him, him and I accept that and I don’t, I don’t have that as something that gets in the way because I accept that that’s his view and I, who am I to say that he’s wrong to think like that you know because he supports me.

No well if I tell you that this is a man who last winter fractured his ankle so badly that his foot was facing the wrong way and didn’t want to have a plaster cast.

Oh gosh.

And in fact insisted that they took the plaster cast off and he just stood up kind of thing and thought he could go back to work. He doesn’t do medication, he doesn’t do doctors, he doesn’t do, all of that with [husband] is a sign of weakness, and it’s a sign of frailty that doesn’t feature in his being. so again I think, interesting I wonder if I dare ask him, not dare ask him but would I bother.

Would you have the conversation?

What did he think about me still being on tablets? I don’t think I’ve ever asked him no I don’t know, I don’t know.

Is it something that you very much keep for yourself?

Well it’s just, it’s just me.

You know that

He would pick them up from the doctors for me if he was going past, he would say to me, you know, next week when we are packing to go to [European city] he’d say, you know, have you remembered your tablets, you know. It’s not a bone of contention between us it’s not something that causes problems or it’s just.

That’s his way.

That’s his view of life, that’s his, that’s what makes him, him and I accept that and I don’t, I don’t have that as something that gets in the way because I accept that that’s his view and I, who am I to say that he’s wrong to think like that you know because he supports me.

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.

But I thought well if I want to actually make friends and stuff I’m going to have to start, because lunchtime’s like a key social time for people at my school. So I thought, Oh, I’m going to have to start trying to have lunch with them So I took it with me and I sat with a friend that I was quite, quite close to, sort of comfortable with and had it. The first few times sort of sort of had it on my own with her, or with a few other people that didn’t know, because then they wouldn’t be staring at me thinking, Oh she’s eating sort of thing.

But now I just have it in the sort of common room with everybody else and nobody ever says anything to me, which is good because I was expecting people to make comments and stuff. But that’s all in your head really, oh yeah everyone’s gonna be saying to me, Oh I can’t believe you’re eating But nobody was like that, they haven’t got the guts to say it for a start, and it’s what everybody else is doing so it’s not unusual. it’s more unusual to sit there and not have anything. That’s when people are gonna notice.

Was that why you were uncomfortable eating in public? The sort of fear of people’s comments?

I was scared of people making comments on me and I was scared of them looking at me and thinking I was being greedy, or Why is she eating that? She’s so fat But I’ve started to think well you know I just, everybody else is eating they’re not all looking at each other thinking that, Why are they having chips? they’re fat Or whatever. People don’t really do that.

they’re more concerned about what they’re eating and talking about what’s going on in school, so just sort of now I’ll just have it, get on with it, try not to panic too much, and distract myself with what everyone else is talking about.

Have you always been quite good at always remembering to take your tablets or, how do you remember?

Well previously like clockwork… but since I’ve had a baby it’s not as good, Ive got a reminder on my phone but I, the first packet of tablets, because now they’re all generics, you know, like not branded, the first time I took it was branded and it all had nice days of the week of packaging… This time I got some there was no days of the week and I was all over the place, sometimes I was taking two, sometimes I wasn’t taking any but at least now whichever chemist I got my last batch from it’s in days of the week and that really helped. because my alarm goes off, a reminder on my phone every day to take my tablet and I thought yes must do that but then, you know, something happens.

So if you had a time when you’ve forgotten or you haven’t taken one for a day, what would you do would you take one when you remember or would you wait until the next day?

I would probably take one when I remembered because I know I’m a, on a very low dose but then I guess if I remembered in the middle of the night I would wait until the next day. But I know on a couple of days I’ve missed them and I haven’t felt particularly unwell.

Right I was going, because I was going to ask if you’ve ever noticed a difference if you’ve missed?

No I think in maybe the first couple of weeks I noticed if I hadn’t taken one but not now.

What would be the difference?

Clenchy jaw.

That would return?

Yes clench jaw when you’re yawning would return.

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 wasnt 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 wasnt 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.

Get as much information from as many different sources as possible not just to accept the first thing that they were given by their GP and if they were given something by their GP to then look that up and on the websites they’ve got mental health and medical websites so to go to one of those make sure it’s connected with a mental health service or hospital so that you know it’s, you’ll get all the details of side effects and other details if you want to find out more about the drug itself. But also I would suggest that they go on line and maybe go on go to health forums and there’s also sort of some depression kind of forums to talk to people if they don’t know anybody but where they can contact the people to find out what their experiences are, just in terms of some support and also might make contact with people who might make helpful suggestions or be able to share some of their views. Also locally if they have a MIND service or a similar mental health charity that they can access MIND is particularly good because they are generally very well resourced but it depends what part of the region you’re in but they have a fantastic website they have also in major cities and towns Wellbeing Centres where you can actually ring up locally or just drop in to speak to somebody confidentially or to find out about other kind of support that might be in the community just counselling or groups or any kind of thing. I’d say that anybody who’s experiencing depression or anxiety or some kind of mental health problem then try and get as much advice and support as you can and for everybody that’s different.