I talked to these people and most of them said,Oh well or some of them said perhaps the more knowledgeable ones saidAh well they can do something about that nowadays. You know articles in the press and one thing and another mentions a drug To whit I said, which is the only one that ve had any note of that might halt the progress of this thing, if it were to be Alzheimes.

Clinical psychologist I suppose. I dot know what you would call them anyway but they were, specialists and they came round with, in some case a community nurse or one thing and another and sat at this table and gave [my wife] tests. Oh last year I suppose, the normal type of thing that I associated with experimental psychological tests really, you know tests of all the various facilities and faculties and so on and so forth.

And then chatting with them afterwards, the general, consensus seemed to be that certainly [my wife] had got this, these failings but they did not or were not prepared to prescribe anything like this until it was – in their mind – confirmed that she had in fact got Alzheimes. So reluctantly I had to agree with this. Now it took about nine months and several visits from them when they tested and then saidWell wll re-test you after a while to see whether there has been any deterioration of various abilities

And finally sitting here Dr [name of psychiatrist] said to meWell, yes the answer is Alzheimes and we would recommend that we put your wife on 5 milligrams of Aricept a day and then for a while and see how that goes and then wll test again and if necessary wll put the dose up to 10 milligrams a day, test again and all the rest of it. And that is the situation that wre in at the moment.

I was, well you cannot be annoyed with doctors and there the bosses after all, they should know what there doing. But I, did feel that waiting for something like nine months with the deterioration being perceptibly worse and knowing that had it been prescribed nine months earlier it might well have arrested it at a much more less serious, condition.

Theres a drug int there which, they say will retard it? That worries me because the, main problem was when my mother was in the sort of middle part, middle stage, when she was getting confused but not confused enough to go into a residential home. So that’s when she was a loose cannon. And if one of these drugs just brings somebody back to that situation then I think it’s a very bad idea, I wouldn’t have been able to cope. Which is perhaps a bit hard, the person concerned might have been happy, but I wouldn’t have been.

As I said, this drug did cause me concern in which perhaps they might be able to bring somebody back to an intermediate state. I said that really does, because I feel that’s when it’s most difficult. When my mother want quite bright enough to be sectioned, but was beginning to have erratic behaviour, and that was very difficult to cope with, and as I said, again there werent the procedures to cope with it. And Id feel unhappy if drugs are researched say brought my mother to that situation but, couldnt bring her back to a situation which she could, could cope for herself. Which seems a bit unkind but I think youve got to think of other people as well.

For instance the only way I knew about Aracept was talking to a lady in America, a nurse in America who did this, looked after people with Alzheimer’s and that, ‘Have you tried Aracept?’ But nobody had told me here about Aracept and when I did mention it the main thing that come across was ‘It would be very expensive and it would cost you about £70 a month. But nobody had told me about it, you know, I mean they knew about it so why didn’t they say something about it.

That was an NHS prescription, and that was simply through the fact that the psychiatrist we had is a brilliant psychiatrist. She is so kind and she is so fighting for the patient, rather than going with the system and it was also due to my GP and the practice generally. They had to decide whether or not they would be willing to fund the Aricept and they did, they funded it for, I think he was on it for about ten months.

But they did tell me that it had been shown not to work in frontal lobe cases and also there is a period in early dementia, early to middle dementia which is the only time when Aricept has been shown to keep things balanced. I mean it doent cure, it doent make people better, but it does slow the progress down, and keep people on a an even plateau for a lot longer than they would be and I think my partner was really past the place, the case when it would have helped him even if it hadnt been frontal lobe dementia.

So it was worth a try because I would never have forgiven myself if, Id have thought that maybe it would have helped him. So hes not on that now.

I think that if its the right thing for you then it should be available. And I think maybe we should have got some to start with. Because it was so bad for him I feel quite aggrieved at all the money that we spent out on it. I think if wed been offered a trial period and it was working then maybe I wouldnt have felt so sore about having to pay. But I feel if it does work like it did worked for (my friends) I think you know you shouldnt be penalised. I mean we could have afforded it but it want easy. I know lots of people who just simply couldnt find that amount of money.

So, I think of it, its like with the MS drugs, I think if people need it they should have it. I dont think you should be penalised because of, of your illness but I think that is absolutely wrong. People who need treatment whether its for gout or measles or cancer or whatever, if you need treatment it should be available, you shouldnt have to sort of scrabble through your savings to get it or go without because you havent got the resources.

I dont think theres any question about, that. I know they were sort of saying Well it was only for a limited time but when you know somebodys going to die of their illness, limit the, all your time is precious and I dont feel that you should reduce the quality of somebodys life because of the lack of their funds. Ill get off my soapbox now!

So we had some medication which, I suppose it calmed my husband down a bit. That’s something else I forgot to mention. When he was first diagnosed as Alzheimer’s he was given Exelon and he gradually built up to the top dose and he was just so ill physically.

He was completely spaced out, he was vomiting and he was totally zombified. And as soon as we could we came off of it gradually, and it cost us a fortune as well! Spending a lot of money to make you feel ill is not very, helpful.

I was very keen to be involved in the research, for my husband to be involved in the research because of finding out what happened to him, of finding out what might have caused it and helping other people. It’s, it’s a strange thing and I don’t think it’s, I don’t know how typical it is but a lot of people say I went through a dreadful time, it actually makes my life better if I think that other people can profit from my experience and don’t have to make the same mistakes and fight the same battles;

And, and there was very much that feeling. And also it actually offers an awful lot of support which wasn’t the reason that I wanted to be involved but was a very unexpected bonus from being involved, that you got a lot of, a lot of support, a lot of information that wasn’t available outside the research project. And it’s also, if you want to do well you enrol in a research project.

And we didnt have really any of that back-up and to be honest with you I felt used, especially when [my husband] went on to one of the trials of what became one of the Alzheimers drugs, I think it was Exelon, but Im not sure. We were on this trial programme, and we did go to the hospital an enormous number of times for umpteen tests and I just felt that wed become more like research fodder than patient and carer.

Maybe its wrong of me to think of that but we were investing a lot of our time and energy in the programme and it would have been very good to have had something by way of support, if it was only sort of you know, can the hospital offer you two hours off as it were, pay for two hours off for me, as a thank you for bringing your patient, because it was a whole morning out every time we visited and we did feel like research fodder.

And then I think the first real dilemma I came across was when my husband began to have a really bad reaction to an increased dose of the trial drug. He was hallucinating and fitting. And it was difficult for me as a lay person to know whether this was part of the illness at this stage or whether it was something to do with the drug. So at the next visit I suggested to the person in charge of the drug trial, would it be possible for my husband to come off this drug for say three months, so that we can see whether this is an unwanted side effect or whether it is still an underlying part of the illness and nothing to do with the drug.

Because on the whole on the drug he was performing the tests better, which is one way of measuring the effectiveness of the drug but if its producing fearful hallucinations and fits, I think Id rather that he want on the drug if I had choice. So here was me making the first of many decisions on his behalf because by this time he had gone beyond making decisions for himself and I decided after considering all the options to request that we come completely off the drug. But I was told that, that was not possible.

Sorry, let me say that again, I requested to come off the drug for three months so that my husband could be monitored and then perhaps re-join the trial if it was found that the hallucinations and fits were an underlying part of the illness and not a side effect of the drug, but I was told we were not allowed by the drug company to do that, and if you came off the drug you came off it for good.

So I weighed it up and he came off the drug and within a fortnight the hallucinations and the fits stopped but possibly his abilities as measured by the tests were probably less than they would have been had he stayed on the drug. But I felt that it was a real worry, a terrible worry dealing with hallucinations.

I remember one day I was feeding some shrub cuttings into a shredder in the garden which stood about three foot high, large, red, with a large hole in it and my husband turned on me and slapped me across the face. He said Ive never done this before but Im ashamed of you. And I said What have I done? He said You know what youve done. And eventually later on when hed calmed down a bit it turned out that he thought I was Devil-worshipping because I was offering oblations into the mouth of what looked to him like a red Devil and it even had two white markings which would look like eyes. And that was the level of his hallucinations; he was just not making sense of his world.

And that was the kind of incident which I wanted to prevent. So thats how he came off the drugs, and I think that was the first time I had to not go in the way in which we were expected to go. The fascinating thing, the hospital