I dot know that he was ever diagnosed in the sense that how, well let me put it this way, the local Mental Health Centre is or was at [hospital] and I was aware he went there for one of his relief days. And he then started going to [village hospital] and I cat remember what it was but there was something to do with [village hospital] that happened and I sort of said I don’t know what the hell’s going on, because I didn’t, I had no idea what was happening And I got a bit agitated about this.

And that’s when I got a, I first got to meet [name] and she phoned me and said “Look I run the Friday thing at, [village hospital] and I understand there’s been some sort of communication failure, can I come and talk to you?” And I said “Well that’s very nice of you, yes do.” And she came and talked to me about what they did and how they, how dad had been referred to them by one process or another and she talked to me a bit about, about the disease and how she saw it in a way that I’ve found helpful ever since.

But I can’t actually say that I understood that he’d ever been diagnosed in that sense. I think, I’m not sure that there is a diagnosis. I think actually he’d come to a gradual recognition that this is probably what’s happening. I’m not sure that I mean you know if you asked me to define how, the point at which you know it’s not just age deterioration so it’s not just an age related dementia and it is Alzheimer’s I have no idea.

I knew something was happening to him and he and sometimes I would say to him ‘You know somethings happening to you don’t you?’ And he, didn’t say yes but he didn’t say no, and I tried to play it down although I had this awful gut feeling that it was tremendously serious. But I tried to play it down by saying ‘Perhaps it’s something like a chemical imbalance in your system, and if you have blood tests and get sorted out by the doctor then it maybe can be put right with a course of tablets or something. Which of course if it had been something like B12 deficiency which can be a cause of dementia then it could have been put right by the injections. I mean he has them now anyway on a regular basis.

Impotent fury I think would aptly describe the way I felt. Very, quite I felt quite depressed because I felt so helpless and I tried to get the help of the doctor and the doctor did say he would come out and see him but I thought probably he would refuse to talk to him anyway even if he came out. So impotence and anger, those were the two main feelings I can remember.

Here was he going along with his life as he wanted it and I was knowing something was going drastically wrong and yet unable to get him to do anything about it.

Did actually having the diagnosis help?

In some ways it did, it was, I suppose it really just made me accept that what I’d feared as the worst was actually the worst. That there was no doubt anymore if it was dementia and it was a progressive situation. And although it was upsetting it was calming in a way because you couldn’t kid yourself any longer, not that I was kidding myself all the way along, but not that I really knew what was involved with dementia at the time. But yes, I suppose in some ways it was a calming but upsetting situation.

One of the main difficulties that I and the rest of the family have with my husbands disease is peoples total inability to understand it. When you mention the word dementia which its not always appropriate to mention but when you mention, a degenerative brain disease thats progressive, that sort of thing and you hint that its akin to Alzheimer’s. People think of Alzheimer’s disease, they think of somebody not remembering what your name is, not know what day of the week it is, not knowing who the prime minister is.

Now with a frontal-temple dementia, those kinds of things stay intact while an awful lot else is falling apart at the seams. So, you get a situation where because my husband is very articulate, because he can still read the paper and he’s got time, he probably knows more about world affairs than most other people who’ve got busy lives. And he will discuss this with people and they will look at me as if actually its me thats got the problem. What on earth am I talking about?

Our medical friends are some of the worst, my husband cannot drive, he cannot now practice medicine. They know what the diagnosis is, they’ve only got to go to the Internet actually, and bother to look up how it affects people. They come to us, they say Oh, are you back driving again yet [name]? Now this is a degenerative disease, it isn’t going to get better, its actually getting worse. We’ve had remarks like Oh, are you doing any locums [name], to pass the time?

And because they spend a short enough time with us that they don’t see a problem, its deeply isolating and the children actually will daddy to, to blow a gasket simply in order that people will see that its real, what we are living with is very real.

Well I think wed just gone through a phase, just after wed moved when I realised we had a very urgent sort of something going on, and I did suggest nicely several times ‘Would you go and see the doctor?’ or ‘I think we need to go and see the doctor,’ or I tried to persuade him that you know his memory was really poor and that perhaps we could get some help.

I remember really losing my cool one night and just saying ‘I just cannot go on living like this, it’s just too awful. And it was just after Christmas I think I made an appointment to see his GP and I put him in the picture. I gave him some examples of what had been going on and you know how the changes had sort of become more obvious after the move and everything. And he said ‘Well we don’t have to think gloomy thoughts, there are other reasons why people become forgetful, well do a full MOT.

So I did get [my husband] in to the doctor’s with a view, I mean I was up front about it, I said ‘I’m worried about your memory but the doctor said he hasn’t seen you for ages and hed like to give you a full medical. He said ‘Well I’m perfectly fit, I walk fifteen miles twice a week and all the rest of it,’ and I said ‘Well perhaps well just get you checked out, just to be on the safe side because I knew he had high cholesterol and I said ‘You need perhaps to go and have your cholesterol checked if nothing else.

So he did agree to go to the doctor and he let me go in with him on the first occasion and the doctor took lots of bloods and made another appointment and all the blood tests had come back pretty well OK. So he talked to [my husband] and [my husband] did agree eventually that he would go and see somebody about his memory.

The GP was I think quite good initially, he went out to visit her, went out to visit her again a week later to see how much she remembered of the visit. Did the standard things to examine for physical illness, which I think is important at first, you mustnt categorise somebody as having dementia unless youve excluded other things that can make them confused, especially in the elderly, theres a lot of things that can do that.

So he took blood tests and arranged a CT scan to see if there was anything happening intercranially with my mum, which there want and went back to talk to her and felt that she was slightly depressed and slightly confused and very anxious. So referred her to a psycho-geriatrician who came to assess her at home and I went down for that assessment because I felt it was important for somebody to sort of give mum some support. And also one of the problems with my mums illness throughout is that shes been in complete denial that theres anything wrong.

So somebody going into her house and asking her a lot of questions about the mini-mental test score for instance which has got questions which is fairly obvious to anybody whose not very, very demented you know that theyre asking you about your memory. And you know when you cant answer those questions as happened with mum, she got very uptight and quite, agg., not aggressive but, the realisation there was something wrong and she want giving the doctor the answers that she wanted made her get quite anti about it really. A bit bolshie I suppose.

And I think, I left the doctor to talk to my mum in the living room and went into the kitchen and sat in the kitchen listening to her answering the questions to the mini mental test. I think that was the first time I realised quite how wrong things were because listening to her trying to answer those questions is a good test. Some bits of it were completely normal and you could see the areas, different areas of cognition and memory that it was testing and some were fine and then there were others like short-term memory and language skills and things which my mum as an ex-teacher and very interested in English and history and literature she had always prided herself on her control of language and use of language and listening to that from the other room I just realised that she was really quite handicapped, already.

So at that stage the doctor had made a diagnosis of borderline dementia but trying to explain that to my mum was very difficult. She obviously wanted to know why this doctor was coming into her house and talking to her and asking her all these silly questions. And sort of, at that stage the doctor did say I feel theres something wrong with your memory, and, she completely denied that and got very upset and thats another reason I think to be with people when theyre seeing the doctor, even in a home setting, with a home visit. Because one thing Ive found over appointments with different professionals is that after theyve gone youre often left to sort of pick up the pieces of somebody who is very upset and its takes a while to, to do that.

Its not the fault of the person who has come to do an interview or talk to the patient, its just the realisation that people are looking at somebodys mental state. When their doctor comes and takes blood or examines you or looks at your physical state then thats a, you know thats an affirmation that theres something physically wrong with you and our society is clearly happy with the idea of labelling somebody as being physically ill.

But theres still an enormous stigma, especially with elderly, more, people who are older in our society about the idea of mental illness and dementia is an organic psychosis so it’s, elderly people feel incredibly I think embarrassed.  And awkward if a doctor comes to see them and ask them questions about their mental state which you know will give them some idea if they’ve got insight that there’s something wrong with them. And it makes them very upset and it certainly upset my mum every time that we did anything in terms of assessing her. But in the face of complete denial that there’s anything wrong there’s not a lot else you can do.

Times he’d be really good, times he’d be really vacant, and I’d say to him on a… on a morning, “Oh, don’t forget we’re going to do so-and-so today,” “Oh, arr, we… I’ve been to bed since then,” that’s what he always used to say. He got himself a mobile phone, which he couldn’t manage, he had a real struggle trying to remember what to do with it. And about 15 months before he died, I just thought, ‘do you know what, this is just not right,’ so I said to him… and I’ve since learnt it’s very difficult to… to say to your loved one, ‘I think you’ve got dementia, we need to sort this out,’ because they would always, always deny: ‘oh, no, no, no, I’m just having a bad day, don’t worry about it.’ So I said to him one day, I said, “I think we need to pop and see Dr [name],” “Oh, do you, why’s that?” and I said… and whenever he went to the doctor’s in these later years he always wanted me to sit in with him because he could never remember what she’d said, so I said, “Well, I think we need to go and see her and we just need to have a word with her about memory,” I said, “you’re just getting a little bit forgetful and I think it’s a bit worrying,” “Oh, do you think so?” so I said, “Yes,” I said, “I’ll make an appointment.” Anyway, we went, and Dr [name] was astounded as how bad he really was. We were referred to the memory service which is based in [location] for this part of the world, and in those days it was quite quick to go through the service, and the consultant was really worried – wanted him to go for a brain scan, and he was diagnosed then with medium-term dementia, and once he’d got the diagnosis, he just sort of seemed to give in, and it was real struggle.