Not a lot. I thought that dementia was something that very elderly people got, equated it with senile dementia and that as bits of our bodies age so of course the brain ages and I had no, idea that it could attack someone in their forties, my husband was 49 when his started. Well now of course I know it can attack even earlier than that, so I associated it with somebody probably in their late seventies and eighties and I think I had a picture of someone sort of quietly losing their marbles in a corner, you know like grandma’s in a corner and she isn’t quite with it, you know.

I did not know anywhere near enough and of course now I realise people generally don’t. For example my cleaning lady who comes in to help, she said ‘I had no idea that Alzheimer’s was like this, if I hadn’t been so near it for so long. So I think unless the illness strikes someone very close to you, you don’t know what it entails and I think it’s the changes of behaviour, the personality which I think are the most unexpected features. Because, yes people in the olden days would just tuck folks away or put them into an asylum, or maybe people never just got to live that long in some respects, so there weren’t so many of them around.

I think its the lack of information. I mean real information, not just hearsay, thats quite hard at times. I mean I suppose if youve got as far as having a professional carer or care help, then you must at some stage have, have been through whatever systems there are for helping, so they probably know about it anyway. But I didnt know what there was. I didnt know what the disease entailed. I didnt know if, I did know there was no cure. I did know at that time there was no treatment. I didnt know there was any care, you know respite care available until it was far too late, even if it had been suitable it, it perhaps might have been earlier, I dont know, before the real fear and terror set in.

I think really they should just not assume that everybody knows what theyre on about because theyre all in their particular sphere, because they all seem to know each other. And they rattle off these names of people as though weve all heard of them, and we never have, you know, I think sometimes, not all, and this is, this is, this is a generalization and probably not true of many of them but some of the ones that Ive met assume that you know there are various services for this and various services for that. I didnt know I could get a, a thing to go over the loo, so that my husband could sit properly without falling off. I didnt know I could have little handles on the door.

I didnt know I could have got a wheelchair. I didnt even, I didnt even know there was a community psychiatrist. I dont know why I didnt know that. I suppose it never occurred to me to ask. But certainly nobody told me. I dont know whose job it would have been to tell me, I dont sort of suddenly think, Oh they should have told me, I dont, I dont believe this mysterious they, one has to take responsibility but it would have been nice to know from somewhere that this, there was somebody I could have spoken to, perhaps a little earlier than, you know two days before he says OK, hes got to go in. But maybe thats what they do, I dont know.

Those I did meet were perfectly nice and helpful when I finally got to meet them. So I would say make yourselves known. Or make public your availability, bearing in mind that carers dont go out very often, theyre stuck. Maybe, but I dont know how they could do that.

I went to the library and just looked it up. Later I joined the Alzheimer’s Society and they had some very, very useful leaflets and the only really useful book I have every had came from them, and I can’t remember what it’s called, but, it’s the standard one that they issue. I think its called ‘Caring for Someone with Alzheimer’s or something like that. Something you know fairly basic for the subject.

And that was useful. And that it listed most of the symptoms that people had and explained that they didn’t have them necessarily in that order, and they didn’t all get them all. And that the stages of the disease, how it developed, that it went into perhaps three, well four including the really terminal stage. I think those who are lucky die of something else first. But I didn’t know anything about it.

But in parallel to that, you know we did what a lot of people would do, we went to Waterstones and we bought several books. Connie herself bought a book on dementia which is quite interesting. It is very helpful, very good indeed. I also bought several things. So quite quickly wed got the theoretical background to it and because of having a contact, a very close friend indeed who was a social worker working in this field we were getting information not within this locality but we were getting quite a lot of information and help sheets and so on. So we found out quite a lot ourselves about it.

After about nine months when I realised that nobody was really going to come trotting to the front door to tell me things and ask how we were, I needed to reach out to find out more at which point we joined the Alzheimer’s Society. And that, the Alzheimer’s Newsletter and various other things, I send for all their literature, so within about twelve months wed built up quite a bank of information about the disease and about the process of caring and dealing with the various issues, legal, financial and so on.

So most of it we did ourselves but gradually as weve come into the system we have been able to tap into those sources but initially it was a bit skimpy. I hope that’s not unfair. Now I would know what to ask for but I didnt know that you could ask and that’s surprising isnt it, I mean I would have thought I would have known my way around the system but I actually didnt. So there you are.

Well as I say it took me a year to get round to the view that actually you do need to tap into all these sources of support and help and I regret that I didnt do that for nine months to a year. Things changed really radically for us once we did that and I wish Id done that. But I guess that’s how it goes, that it does take time before you begin to understand that you need to look outwards towards other supports.

I suppose were the kind of people may be, like yourself, youve been used to sorting out your own problems without going to outside agencies and it was a matter of pride that one could do this but that was kind of misguided. I try, if I meet people new to this situation I try to say this to them but I think everyone has to go through it in their own way. But I do regret we wasted a year really, I Don’t suppose it made that much difference in the end but I think it would have been useful if wed got involved in the Alzheimer’s Society and other things much earlier. But in general I Don’t think there are too many regrets in that way.

But the interesting thing to me was, at the point of diagnosis and at the next appointment at the hospital [when] it was confirmed that this was the most likely scenario, we were just kind of dropped into thin air. When I compare what a cancer sufferer might have, and their family, at the point of diagnosis, you know, where for us was the back-up of either a specialist nurse, or a telephone number to ring, or, I didnt even know of the existence of – well, what was then – the Alzheimers Disease Society at that point and I certainly had no idea where a local branch might be.

And I think we were all in such shock we needed people to come to us to help us, rather than ourselves having to go out in the highways and the byways to find help and I think thats happened to a lot of carers and a lot of patients, that they are, at the point of diagnosis, just turned out into the street and dropped into thin air. We went back to the hospital many, many times over the following two years and for umpteen psychometric tests. I was given my husbands scores and his results were conveyed to me by letter, but actually what I wanted and what I wasnt getting, were strategies for everyday living and how to help my husband to celebrate what he could do, rather than to get depressed with what he couldnt do.

Things like, given that the damage in the brain is going to be different possibly for every single Alzheimers sufferer, what activities should he avoid in case it produced not only danger but frustration and anger. And what parts of the brain were still intact and what kind of activities therefore would be pleasurable for my husband and not give rise to frustration, loss of confidence and then difficult behaviour which I was left to handle.

I think that I could have received a lot more support and a lot more information which indirectly could have helped my wife because once I started reading about dementia and understanding some of the problems then I could face, not face my wife, but I could face the situation a lot easier.

And certainly reading from other peoples experiences like for example once my wife didn’t get out of bed it didn’t enter my head at all that she might have forgotten where her clothes were. And I read an article in a magazine where somebody had the same problem and the wife had actually got the clothes out for her husband and put them on the bed and helped dress him.

And that hadn’t entered my head at all that my wife might no longer know where her clothes were or indeed what sequence to put her clothes on. And that simple little article helped me a lot because I then got clothes out for my wife, when she wanted to get up, helped her dress. And that was because, simply because through the Net, through purchasing books and booklets I found out that information.

So I think that simple little experiences from other carers can make the carer think the way in which they can best help the sufferer and it’s trying to, I found that I had to try and think on behalf of my wife and for my wife because she was now longer, no longer able to think for herself. And it’s putting yourself in their position and trying to understand the difficulties that they have then I found the more you can obviously help them.

Most helpful I think I have found reading experience and articles of other carers. I think that, just the simple little experiences like I previously mentioned about the clothes, about food. They’re the most helpful things I found.

I found the support from the CPN tremendously helpful once we had a CPN allocated. And although the CPN theoretically is for my wife he spent a lot of time giving me support and help. And I got a lot of advice, a lot of support from him, so I think the two most helpful things have been reading articles and the support of the CPN.

Well I knew, Id had the experience of my mother-in-law who, Im trying to think when she had breast cancer, in 83, she survived in her own home until I think it was 1987. We went on holiday to my old boss in Portugal and her, my mother-in-laws niece who had this retirement home had her to stay while we were away. She was still living on her own at [village] where shed lived for years.

And it was only then that they realised that she wasnt really capable of looking after herself any longer. We didnt really pick this up. We found odd things like the fact she had a job to manage her bank account, finances and things and my wife became a joint signatory. But that wasnt surprising because her husband till he died, and he died in, early on in 19 – daughter was born in 61, late 60s, without looking it up I couldnt tell you the year.

Shed never had to look after the finances so it didnt come naturally to her at any rate. So we didnt really expect anything there. It was only when she came, we came back from the holiday and we went in the house and discovered things like saucepans popped in a cupboard with very burnt bottoms and things like that and began to realise there was a problem.

So I learnt a bit then and then I learnt more from my sisters point of view because I used to ring them up to see how they were and they, I could tell that one couldnt remember who was supposed to pay the phone bill who, they tried to share it between them and they got very confused and in the end they ended up with summonses because the wrong person hadnt paid the bill and things like that. But theirs was not dementia in the same way as my mother-in-law so I suppose I, I, by the time my wife began it in about 92 I learnt quite a lot from my mother-in-law, I was beginning to get a feel for it. Nothing on the technical side obviously!

But I suppose that probably helped quite a lot in that I could see that she was following her mother very much in the same sort of way. And that probably helped me cope with it because wed had to cope with mother-in-law, I mean OK she was with her niece from 87 for a couple of years and then the niece had to give up the small residential home and they got her in to a very good, a particularly good nursing home in town because shed lived in that area all her life and her friends used to go and visit her until they didnt know how to cope, they didnt get, when shed chat away saying nothing, this sort of thing.

I think I said Id seen somebody with dementia before in the family from, a non-expert point of view, just as a kid seeing the way that it sort of reduced an adult to somebody who was quite obviously simple if you like. And one of the, most remarkable things is the memories that I have of my grandmother having dementia, some of the behaviours that she exhibited then that I can still remember have been reflected in whats happened to my mum, very much so.

Obviously because Im a doctor I went through medical training and did things like neurology and geriatrics so Ive come across people with dementia before so I have some idea of the sort of physical and clinical aspects of it. But you know that didnt stop me missing, missing it in the early stages with my mother.

So I did get on the computer, on the Internet and it was only then that I found out some of the devastating effects it does have on people and their lives. But certainly had I not had the Internet I don’t know where I would have found the information out really, as much as I did. Because I did find out, like for instance I found out about the Alzheimer’s Society which I’ve now joined but I didn’t even know such a simple thing as that.

I just didn’t know anything at all. But I soon learnt, I soon learnt from other people. I mean some people that I spoke to had been looking after people for ten, twenty years, I mean that seemed unbelievable and then I found out that you don’t die from Alzheimer’s. I just got more and more information like that which really I suppose is only basic but it did help in the fact that I knew some of the things that might come along and some of them certainly did come along.

Well try and quickly get as much information as you can. Certainly try and find out all your rights and the person who’s got Alzheimer’s, their rights, pretty quickly. And I think the people who are supposed to know all these things really should know them better. I found looking after [name] not too much of a problem, tiring at times. The biggest problems I had was with outsiders, trying to find out things, trying to get things done. As I say we like, we all need us feet doing but to wait four to eight weeks to get somebody’s feet done is absolutely ridiculous.

The other thing that I haven’t mentioned which was a terrible trauma for us, if it wasn’t Alzheimer’s and were not really sure what it is, well now, that opens up huge possibilities for a wife who is grappling with horrendous possibilities, its all very, very early stages. I actually started bullying my husband and saying ‘Look, will you try harder? If you try harder, you might not do these things wrong. If you try harder you might remember x, y and z. And that was horrible and I bitterly regret that.

You know if I had known more I would never have put [my husband] through that. And I think I, I caused my husband to doubt the validity of what, was he ill? Was he well? Should he go back to work? I certainly doubted it because I was not being helped to find a proper diagnosis. That was dreadful. So yes, I, I wish that I had just gone on saying ‘Look hes ill, will somebody listen to me?’

Initially I think you’re looking for an explanation of what has happened so I wanted to know what dementia was, exactly how it affected the brain, in quite a lot of detail you know, I wanted to know that kind of physiological and psychological data and I got that and that’s not difficult to get hold of. There are several books that gave me that information. I also found it, I was going to say – I havent thought about this so I’m having to kind of reflect on this – all that material about the role of the carer and how he or she can play the role, what the issues are and so on, at that stage I think passed me by. It took a long time before I began to reflect on that, other than just the day-to-day coping way. I can remember someone coming and saying Well you ought to think about power of attorney. All this sort of went in one ear and out the other really.

It’s the last few months that I began to think more and more about information about the role of the carer and how it can be played effectively and so on and so forth. Which I suppose is why I wanted to be involved in this project. So initially it was What is dementia and where does it come from? You know you begin to think What are the explanations, what are the factors here, is it genetic, is it to do with the accident, why is it happening to my wife? That was what I wanted to know initially but you know now that’s neither here nor there, it’s about how we can live our life most effectively over the next few years that I want information about. I like talking about that sort of thing and that’s why I belong to carers groups and so on How can I play my role as well as possible so we can both go on having a pleasurable sort of life together?