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 we'd 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.

My wife loved having her hair done and it was at the, when she didn't want to go to have her hair done that I realised that she then had I think gone into another stage, if there are stages within Alzheimer's which I believe there are. We had to have the hairdresser to come in because she still wanted to look nice and took pride in her appearance.

And in the last six months that she was home with me she hardly went out at all. For about the last four months she didn't get up out of bed at all. And with the poor diet and no exercise she eventually got to the stage where I had to call the doctor in because she was collapsing. In the last two weeks that she was home I had tremendous problems. I didn't go to bed at all, listening for her to get up out of bed. I had to support her to the toilet.

Conversation with neighbours, with friends and relatives changed because now I realise that she was losing her vocabulary, losing the understanding of words and therefore finding it difficult to have a conversation. After the diagnosis that became easier to understand and accept, and at least I could then explain to the people what was happening with my wife and the, the behaviour, the behavioural changes that were taking place.

Other forms of communication, verbal communication, have virtually gone. She can't, she can say words but they're not put together to make any sense. So it's virtually impossible to verbally communicate. So I, that must be another stage or another happening. And that I am sure is probably only going to, get worse, because even the few words that she can remember and string together incorrectly will, probably go.

I have tried reminiscing with her and that doesn't appear to work. I've talked about our children, she can't remember the children, she doesn't recognise them when they go in; she doesn't know their names. I've tried to reminisce using old photographs and that doesn't register. I've tried to reminisce talking about our past and that doesn't register. So communication becomes very, very difficult. Which, is another stage.

So I think that relative to stages it's very difficult if not impossible to say that during the first year this happened; during the next year or eighteen months that happened and to actually put the changes that occur into a time scale, which is drastically what I tried to do and wanted to do with the consultant early on. I now fully understand why he couldn't give me much indication other than tell me the likely overall happenings that would occur without a time scale.

I think perhaps the most difficult thing there is that none of the hospitals appear to be geared up, geared up perhaps is over-stating what I mean, but understanding of people with any form of dementia. They just assume that people are OK mentally and if they're not then there doesn't appear to be any way in which they can cope within the system.

And certainly on several occasions when my wife was being asked questions, questions which the person answering wouldn't know whether they were right or wrong, by me being there and knowing it was my wife, and knowing they were wrong, I found that they were pretty reluctant to actually talk to me. And on several occasions I had to say 'That is not the situation between my wife and I.'

For example, they were asking my wife if she had sex and she said 'Yes, regularly.' I knew full well that we hadn't had any sex for a number of years. I knew it was the wrong answer. But the person asking the questions wouldn't know that it was a right or wrong answer. That's only one example of the type of questions that were being asked that I knew full well from sitting there that my wife was giving an incorrect answer. Which again the person answering, asking the questions wouldn't have had a clue whether it was the right or wrong answer.

So I think that, and indeed I did make one recommendation to one consultant that we saw that it might not be a bad idea to have a set of questions for the carer, if they're a close carer, not necessarily the same questions that they were asking the person that they were asking the questions of, but asking if they had experienced any behavioural changes. And indeed I did sit down - I haven't got a copy now, but I wish I had - but I did sit down at one stage and list all of the types of changes and it, and experiences of the changes that had taken place with my wife.

And I did suggest that it might not be a bad idea to ask the carer questions as well. Because I am sure that the carer can give a lot of information about the changes because they're the one that's seeing and experiencing the changes that are taking place. Which could perhaps help earlier with a diagnosis. I'm not sure if it could help with diagnosing what form of Alzheimer's it actually is. You might even be able to do that or, or help along the way.

But I found that a number of the hospital staff were not taking any notice of what I wanted to say sometimes for and on behalf of my wife and sometimes to assist the person answering the questions to, get more of an understanding of what the situation was, really was. Than what they were getting from asking my wife the questions and didn't realise until the latter stages that my wife was saying yes in some places and sometimes it was a yes; but in other cases it was a yes and it should have been a no.

But she was sometimes not able to interpret the words or indeed understand what she was being asked, to understand, to be able to give an answer to the question. So I think I, one of the biggest problems I found was one, hospital staff not understanding people with dementia and two, when you are in a situation where they could get more information from the carer to help with the diagnosis they were not doing that.

I think that, once the diagnosis is made I'm not sure if a consultant or any of the researchers have a responsibility to do it, but once a diagnosis is made I think that's probably where communication ought to start to help the carer. Whether that communication, I assume that it goes back to the GP, we didn't see the GP anymore after the diagnosis from the consultant.

But even if it's to the nearest branch of the Alzheimer's Society, even if it's to social Services, I'm not sure who that communication would be, should be with because I'm not totally sure what of what the networking is yet. But I think that's where the support should eventually stem from, a support for the carer as well as for the person that's been diagnosed with dementia. Because once a dementia really sets in then there's little help that we can give to that person. And the person that needs the support to carry on and to support the person with dementia as much as they possibly can is the, is the carer.

But coming back to the problems, I think it was the fact that I did not want to face and found difficulty in facing the form filling for the various grants that are possible. Perhaps it was part my problem because finance wasn't a key issue to me. I could look after myself and my wife financially while she was at home and indeed if I had to pay the full amount when she went into the care home I could cope with that OK.  

So it wasn't a problem but I found that the lack of information relative to the grants that were available which would be very, very important to some carers, especially if they had to give up generating an income. And the lack of information, the lack of guidance in what grants are for, what grants the carer is able to claim for and indeed some of the complexity of, of completing those forms. I'm relatively average intelligence I suppose but I could understand that if a carer was a lot older than I am, that could cause far more problems for them than, than it did for me. So I think they were the difficult things as a carer that I had to face.

Yes, so even, even, even though we know that the situation is going to get worse and that it's a long, long gradual slippery slope or decline, then I look for the positive things that I can. Now I'm not caring as a full time carer but my wife is in the home and when I visit her I suppose, I don't know ninety-nine percent of the time it's difficult to communicate but it's just a question of perhaps satisfying myself that I know I've been and that I'm still caring and I'm still her husband.

But on that odd one percent when the positive thing comes out like when she does, the odd occasion when she mentions my name or she might mention something that is recognisable then the positive things are the things that I want to hang on to. And certainly remember and come away with, not the fact that after two minutes she doesn't want to see me because she doesn't recognise me and wants me to leave. But I hang on to the positive things now.

And that, I think that's important for a carer to do is to attempt, which is difficult, very, very difficult, but attempt to turn off from the fact that she might drink out of anybody else's cup or eat anybody else's food if it's laying around because that's just part of what's happening. But that one thing might come out like a kiss or a name or a slight recognition, are the things that we've got to hang on to because eventually that will go as well.

So I think, it's very difficult to think positively in a very, very, very negative situation. But I still think that the carer has got to try and think positively. And I think one of the important things of a carer is not to feel guilty. And it's easier to say than to do because on lots of occasions, and I still sometimes feel very, very guilty, perhaps of the things I didn't do, or perhaps of the things I didn't say.

But I thinks it's a, a carer should never, never feel guilty if they have done what they think is right throughout the period of time that they are caring. It's very, very easy to be negative and not to be positive about what you've done because you always think you haven't done enough. But never feel guilty. And always, I was going to say pat yourself on the back for being positive, that's difficult to do, and I don't mean pat yourself on the back, but think of what you've done as positive and not negative.

Initially, before the diagnosis, I found it difficult to understand what was happening with my wife. She was never ever a selfish lady, she began to get a little bit selfish, like when we had the food she would want hers first, even before the grandchildren, which was totally not her. I've already said that her diet changed tremendously.

Conversation with neighbours, with friends and relatives changed because now I realise that she was losing her vocabulary, losing the understanding of words and therefore finding it difficult to have a conversation. After the diagnosis that became easier to understand and accept, and at least I could then explain to the people what was happening with my wife and the, the behaviour, the behavioural changes that were taking place.

Early things I noticed before the diagnosis were things like when I'd cut the grass it was never short enough, or it wasn't the fact that she was pleased to see something done, it was always what I hadn't done, which was not her at all. There were lots of behavioural changes that took place initially.

One of the things again apart from her not becoming aggressive, one of the positive things was that she always took pride in her appearance; she was always immaculately dressed. She wanted to go out when she wanted to go out, I could be working in the garden and asked her if she wanted to go out on that day and within ten minutes she'd come down immaculately dressed and wanted to go out. And although I'd asked her ten minutes before if she wanted to go out, she'd changed her mind within that time, or she didn't understand what I was saying when I was asking her if she wanted to go out.

She's now, she was incontinent at home but she's now totally incontinent. That's another stage that, that is reached. Now she doesn't understand the conversation that I have with her, there's only one way that, no there's more than one way that I can communicate with her because we still have a cuddle; we still have a kiss. But numerically her brain is still OK. She, if my car's parked outside she'll count the numbers on the number plate. If she's in her room we'll go round and count the number of photographs that there are and she has no difficulty in, in doing anything, I'm not sure about doing anything in numeracy because I haven't tried to multiply or divide or anything but certainly counting she does not have a problem. So we communicate there.

Other forms of communication, verbal communication, have virtually gone. She can't, she can say words but they're not put together to make any sense. So it's virtually impossible to verbally communicate. So I, that must be another stage or another happening. And that I am sure is probably only going to, to get worse, because even the few words that she can remember and string together incorrectly will, will probably go.

I have tried reminiscing with her and that doesn't appear to work. I've talked about our children, she can't remember the children, she doesn't recognise them when they go in; she doesn't know their names. I've tried to reminisce using old photographs and that doesn't register. I've tried to reminisce talking about our past and that doesn't register. So communication becomes very, very difficult. Which, which is another stage.

The only other thing that's affected, which is currently going on which has happened recently is that I have, taken a lady friend out for dinner, taken her out on several occasions and my daughter cannot accept that, will not accept that. And that has vastly affected the fantastic relationship between my daughter and I.

I've tried talking to her. She just will not listen. She is not trying to understand in any way, shape or form. Although I can understand, her feelings in that, her mother is still here and I'm taking another lady out, what she will not I think accept or at least try to understand is that I'm still relatively young. She knows I love her mother and my wife dearly, but she is not accepting that taking another lady out on social occasions or for a meal is, she will not accept that's something that I could do or indeed I should do.

And over the last couple of months our relationship has deteriorated through her doing because I've tried desperately hard to talk to her and she won't listen to me. That has affected the relationship with my daughter. As far as I'm concerned it's part of trying to live a normal life.

And I think my daughter is considering that her mum, my wife has, I was going to say only been in the nursing home two and a quarter years, she's been in the nursing home two and a quarter years, and my daughter doesn't understand that it's been, I think the diagnosis was five, six years ago now, that we didn't have a normal - I'm not sure if that's the right word - yeah our marriage changed from what it was some ten years ago. So it isn't just the two and a quarter years my wife has been in the nursing home which I think is what my daughter is seeing. For me it's now some nine, ten years that the marriage with my wife changed.

And I now see it as I think we only have one life, I don't know, I've no evidence otherwise. I'm still not official retiring age. My wife could live another twenty years. I doubt very much if, my wife will probably outlive me and I toyed with the idea for some time that marriage is till death so us part. And I think that my wife as she was is no longer.