I suppose, I suppose in the beginning I lacked understanding, real understanding of her problems. This is all on reflection now because this is being wise after the event. I lacked patience. This is when she was living at home. I would shout sometimes at her when shed done something wrong, something silly, or what seemed to be something silly. And of course you do lose patience I think anyone who doesn’t is entitled to be, well you can either be knighted or sainted, I don’t know they can please themselves which they prefer. Because you, if you shout, I am by nature a bit quick tempered, and if you shout at someone you could bite your tongue off afterwards and instantly. But you don’t think, you don’t think ‘I will shout at my wife in two minutes time because shes done that’, because you wouldn’t shout would you? It’s something that’s instant, you see. It’s, it’s a combination of frustration, anger and worry for them that causes you to.

Then when she was in respite care, shed come home, I found I was changed, I had more patience. But I found then at the end of the month it was going again and it got worse and worse. And I think my attitude to her changed, really changed. I was very upset when she went into, when we had to make the decision that she would go permanently into this residential home. That did upset me and changed me a lot.

I think, I think there have been times where Ive sort of been aware of how his behaviour has been and I sometimes perhaps I was thinking of his, his illness as being partly responsible for what was going on but partly it was like a sort of, personality and his behaviour which had been I say somewhat cavalier, sometimes and perhaps not the most socially acceptable.

But again Im getting a more sort of mellow view of some of the things that were happening. But you know I guess some of it is going to be personality and some of it is going to be the, the illness. I think Im taking a more benign view of it now. Maybe more of it was illness. Certainly anything that happens now I just you know I just cant take it as deliberate or you know aimed at me. I think possibly a year ago, possibly even six or seven months ago I was taking it more as a personal affront sometimes. But perhaps it wasnt, wasnt deliberate.

But certainly, thinking back I suppose I was saying sometimes well this is [name] and this is the illness. Some things were, were sort of, I did feel were different. And I was certainly getting a lot more emotional about what I felt was the, the slights or the dismissive behaviour. Now I just you know, well this is it. I can be a lot more philosophical about it.

Yes, so even, even, even though we know that the situation is going to get worse and that its a long, long gradual slippery slope or decline, then I look for the positive things that I can. Now Im not caring as a full time carer but my wife is in the home and when I visit her I suppose, I dont know ninety-nine percent of the time its difficult to communicate but its just a question of perhaps satisfying myself that I know Ive been and that Im still caring and Im 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 doesnt want to see me because she doesnt recognise me and wants me to leave. But I hang on to the positive things now.

And that, I think thats 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 elses cup or eat anybody elses food if its laying around because thats just part of whats happening. But that one thing might come out like a kiss or a name or a slight recognition, are the things that weve got to hang on to because eventually that will go as well.

So I think, its 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 its easier to say than to do because on lots of occasions, and I still sometimes feel very, very guilty, perhaps of the things I didnt do, or perhaps of the things I didnt say.

But I thinks its 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. Its very, very easy to be negative and not to be positive about what youve done because you always think you havent done enough. But never feel guilty. And always, I was going to say pat yourself on the back for being positive, thats difficult to do, and I dont mean pat yourself on the back, but think of what youve done as positive and not negative.

I think if I had agreed to send her to a home any earlier than I did I would have felt I’d really betrayed her. But I knew when she said she wanted to go home, she went through a stage where home was where she was with her mother and father and brothers. And then she went beyond that stage, this is still while she was in her flat, where home was she didn’t know where, so then she said she wanted to be in my home, where I was. And really that’s what I should have done, really, really, really.

Even now that’s what we should have done, we should have had a bigger house ‘with a place for her in it and nursing staff and I should have given up my job. I mean she actually said at one stage ‘I know you’d have to give up your job, but I’ll pay you. And for the sake of a few years, two, three years out of my lifetime, that would be nothing would it, nothing. I know I have to think rationally, I have to think well there are some lovely carers where she is and where she is, is as near home as any other home could be if it wasn’t my home.

I wished I could have done more for her, yeah, I wished I could have, I don’t know how, but to make her life happier and better than just like being, more or less a cabbage, say towards the end. I would have liked to have kept her cleaner than I did. I would have liked to have took her to the places she loved but she wouldn’t have understood. She used to love going to garden centres. And I did take her when, when she wanted to go and we got to the stage actually where, me and the carer used to take her and um, shed no sooner get there and, ‘I want to go home. So wed come straight back.

It would have been nice if she did still like the gardening, like the theatre and things like that but obviously its not to be is it, you know, so, yeah, I would have liked to have done a lot more for her personally, than I could have done. I did what I could but I would have liked to have done more.

A few weeks ago, and I cant remember what brought it on, I suddenly started to think about [name] as he used to be and he used to think, and I started to think what a smashing chap he was. I met him in later life; I had already been separated from my husband about three years. He had been separated from his wife about twelve years. And I met him by chance. I actually was a Special Constable [place] when I moved into [town] and he came to interview me. And I remember thinking Oh, I like him, but I bet hes married! Well he was, but he was separated.

And I started to think back to those days and I thought, yes, that was what this man was really like. And I started, I started to write the story on the computer because I thought every day now Im confronted with this, a man who is restless, who has his, his horizons have been completely closed in, through no fault of his own and this is what Im aware of at the moment, this is how Im judging him.

But if I look back and remember how he was, that was the man he used to be and thats the real man, thats the real [name], and I started writing it down on the computer, my memories of his and my relationship. And I found that helped a lot. Because I was not just focusing on what he is now but what was and what could have been, and what should have been if everything had gone you know, normally.

So that was a turning point.

I think also, the psychiatric nurse came to see me two or three weeks ago and I was talking about going, going to London to Christmas, I was so indecisive about it that I phoned her up and said Please come and talk to me about it because I feel I need to go for my childrens sake and my own sake, but I feel so guilty.

And she came and she, amongst other things she said Theres an awful lot of people living on their own with dementia, and she said they, some of them are living in squalor and theyve got nobody to look after them except carers who go in. and after shed gone I thought, yes shes right, so really hes very lucky. Hes got somebody here whos looking after him all the time. All his needs are catered for, so why should I feel guilty going and having a few days out. And that was a bit of a turning point, that sort of jolted me back into thinking, well maybe youre doing too much for him.