My husband used to go into hospital for two weeks respite care every two months or so. And I took him, a man who could walk a couple of miles around the village, no problem, every day, and I went to collect a man who was in a wheelchair, couldn't stand, he was zonked out. And for the first time ever I challenged medical authority and that is so difficult to do, because I've always assumed up to that point the medics knew what they were about, but they had introduced so many drugs to [my husband], that he was completely and utterly zonked out, he couldn't even stand.

He was able to go to the loo, but they'd put him in incontinence pads and so I asked that he be taken off every drug that had been introduced in that fortnight. He had to stay longer in the hospital until he was fit to come home. And what had happened of course is that they'd found his behaviour rather difficult to handle and so they had run to the medicine bottle. And I think over-medication as a form of restraint is a national scandal and we carers should not be afraid to make waves when it happens.

The best thing has been that for a long time [my husband] retained the ability to play the piano, he couldn't read music any longer, he couldn't remember pieces that he'd played any longer but he improvised and it was very creative, he's always composed and improvised and that creative urge was there really right up to oh, six, seven years after diagnosis. 

Even when he'd been judged by the consultant to be severely demented and his scores on all the mini-mental whatever it is, these psychometric tests were practically zero right across the board, yet he could still sit down and play a piece of music where he'd set - and each piece was different each time - set out some musical ideas at the beginning of the piece and perhaps twenty minutes later he would return to those same ideas. And yet his short-term memory was supposed to have been shot to pieces.

And also the music gave him a vehicle to express his own feelings and so it was very useful to me as a carer to know that today he's feeling 'angry' because I could tell from the way he was playing a very tense, rhythmically exciting piece. And then another day he would be perhaps more autumnal in mood or perhaps this aggressive piece would gradually become a more relaxed and resigned piece, and I'd know that he'd got it out of his system.

And that to me was the most wonderful thing. He managed to retain that creative musical urge for so long and it was, a source of inspiration and consolation. I think to both of us. And I think the other wonderful thing is how long a smile goes on and even when you can't get any words, whereas now to get one smile just makes the day worthwhile.

Yes, sometimes it's so easy to misconstrue a person's behaviour. Again this occurred during the respite period in the hospital, and I had a phone call to say 'Would I please go to a ward meeting the next day.' To which there was the consultant, some junior doctors, the ward manager, my CPN, there was quite a gathering of people, and the bone of contention was that in their view my husband was 'touching up' the young female staff.

I said 'Well you know, could you tell me more?' And they said 'Well he, when they're getting him ready, washing and dressing him, he touches their faces or he touches their shirt.'  Well I think at this point I had to pick myself of the ceiling and say 'Well, look, my husband has no coherent speech, if he wants to say “Thank you for cleaning me up” or “That's a pretty colour you're wearing today”, how else can he do it except by touching?' And I felt really insulted on behalf of my husband if he was somehow being labelled a dirty old man, when in fact his problem was that he couldn't make himself understood except by touching, which was promptly misunderstood.

And I do think that the best way of communicating with people in the middle to late phases of dementia is through touch, through holding their hand, through smiling, to convey information in ways other than words which they understand and to which they can respond, if they wish to. Obviously some people don't want to be touched, I understand that, but I think the care staff at least should give the person with dementia the benefit of the doubt if they want to be touched. And if they want to touch them then that is a human act of kindness and has no sexual or other meaning to it. Mostly!

Looking back why did it take two years of problems? He was diagnosed as having endogenous depression for which he took the appropriate pills. And yes he was depressed but with 20/20 hindsight, why didn't they look behind what was depressing him, where they would have found classic signs of dementia, the forgetfulness and confusion, particularly losing spatial awareness. Because it turned out that the most significant thing that he couldn't do was to read the music especially tracking from line to line.

But to go back to the question, why did it take two years, I think for someone aged 50, dementia was not on their agenda, so a whole lot of other things had to be ruled out. Eventually when he went to [town] and got lost driving in familiar surroundings, then that really rang alarm bells and I took him straight off to the doctor again.

I gave up work to look after him at the end of the first full year after, diagnosis because he was not safe to be left on his own. And for a long time I looked after him myself and only reluctantly accepted things like day care mainly because taking [my husband] to day care I knew would put him among people who were twenty or more years older than him. He liked to be active and yet the kind of day care that was on offer, was really for the elderly and rather frail mentally ill, and he was not like that at all.

Over the years three lots of day care collapsed and some were for the most bizarre of reasons, it was always [my husband]'s fault. I began to feel like I was the parent of a naughty child who was being asked to go into the head's study to be told about his latest episodes. And when I look back on it now I think, 'Hang about, why blame [my husband]? What you are actually saying is the staff are not sufficiently well trained to cope with perplexing behaviours in dementia'.

And I think this is something that I've learned the hard way. There is a very thin line between caring and controlling and nobody likes to feel that somebody else is in control of their life. And I can see that if [my husband] was being prevented from doing what he wanted to do, as he did here, I would without thinking, have to lock the doors and the gates or else off he'd be up the road, he'd be a couple of miles away before I realised that he'd gone. So that's why he kicked the front door in, because he was telling me 'You're stopping me from going out.'  And when you haven't got the words to explain how you're feeling, then that's when aggressive actions come.

When I look back at the times when [my husband] was being aggressive and by gum he could be aggressive and he was a very gentle man, a very, very gentle man. Now this is the thing that I think shakes you to your foundations, that somebody who has been loving and gentle and kind and never lifted a finger against you, never bashed the place about, suddenly is hitting you, is throwing the furniture about, up-turning the tea-table with all the tea things on it, and it's because he wouldn't have the words to explain how he was feeling.

And I think every situation when I think about it was something to do with the fact that he was interpreting what I was doing as controlling him. Or, you know, like changing the incontinence pads, he didn't understand what it was all about and so it was just some woman messing [about] down his trousers. No wonder he got angry, no wonder he felt that it was an invasion of his privacy.

One of the most frightening moments in my caring was one late November afternoon, it was just getting dark and starting to rain and I realised that [my husband] was missing, he was no longer in the house, I searched high and low for him, he wasn't anywhere around and then I found that he'd managed to undo a patio door and had gone out that way. And I remember going to the bottom of the drive with the light failing and the rain starting to come down and I had no idea which way he'd gone, absolutely no idea which way he'd gone. And I really wished that I'd had an electronic tagging device, that I would be able to have in my hand a piece of equipment which would say to me 'He's gone that way' and at least we'd know roughly where to start looking.

I searched in the car for about three-quarters of an hour until it was absolutely pitch black and I couldn't find him and then I got hold of my son and two or three friends in the village to go searching in their cars and we searched again for about another hour and eventually somebody said that they would try the footpaths. [Name], my son tried from one end and a friend tried from the other and they found him wet and miserable, no idea at all where he was, and with no coat on.  I was very relieved to see him but it had taken what, the best part of three hours to find him, [searching] in an ever widening circle.

And yet I suppose some people politically correctly will say it is an onslaught on a person's autonomy and privacy to be electronically tagged. All that I can say is that if you've ever been a carer and been in that situation of not knowing where to start to look, I think I would have preferred a discreet something on his sock and a quick finding rather than this wet and miserable chap we found at the end.

When I was talking about 'letting go', I found it very difficult to put [my husband] into a nursing home because he seemed so young, he was only 57 at the time, but also it was, I was having to acknowledge that I thought I had failed. I couldn't give him the care he required without exhausting and doing my own health in,  that was really the bottom line. So there was a tremendous feeling of guilt, putting him into a home, and accepting that other people can deliver the care, and learning to let go.

The difficult part for me in the middle phase of the illness was dealing with a man who became practically a stranger and I think this is the most traumatic thing that can ever happen to a couple to a relationship. Because they're behaving in ways which are bizarre, out of character and certainly [my husband]'s aggression was very hard for me to take and I found that I actually reached a point of beginning to hate him. And hated him for what he was doing to me, hated him for what he was doing to the house, in a way hated him for making a prisoner of me as well as of himself, this tremendous feeling of being caged.  Which it is, when you are a carer you are caged.

I think I put him into the home before that hate became a reality, it was lurking, lurking resentment, and then of course when he was in the nursing home, although I was laden with guilt, laden with feelings of inadequacy that I'd failed him, I pitied him that he had to be taken away from his own familiar surroundings. At that moment in time it was right because I could not take any more or else I think I would have gone under for the third time.

And so I was very grateful for that nursing home placement but then when [my husband] calmed down and moved into the final phase of the illness, which isn't anywhere near as difficult, well there's a bit of resistance from him now and again, but he's not aggressive, then I felt ready to have him back home again.

Especially for someone with visual and spatial problems, I began to get quite anxious when I was in the car with [my husband] because he would do things like signal left and turn right, or I'd be map reading and I'd say 'Take the second exit on the roundabout' and he'd take the fourth or fifth, or something, because he was reading the sign the wrong way round. I used to get very worried when [my husband] was out in the car alone, especially if he was overdue, very worried indeed. [My husband] had fortunately been a very safe driver so, hopefully some things were second nature to him. But certainly when he came in and he said he'd driven the wrong way down the M11, that really did for me, he made light of it by saying 'They were altering the junction…' and that was probably the reason, they were altering the junction and there were road works around the place and he completely lost direction. To have driven the wrong way, the wrong way down the motorway itself!  The police stopped him and turned him round and sent him back, and one does wonder if some of the erratic driving that one sees isn't due to people in the early stages of dementia.

But he was very good at giving his keys up. The day he got lost in [town] in familiar surroundings and he was away for three hours on what should have been a forty minute - twenty minutes there, change of tyres to the car, twenty minutes back: he was away for over three hours. He'd been all over the place and couldn't find his way home and he came back absolutely ashen-faced, in a cold sweat and he threw his keys on the table, he said 'Don't ever let me drive again.' And I breathed a huge sigh of relief. But what I would have done had he insisted on driving I really don't know.

Another turning point was a realisation that, I'm sorry if this sounds a bit arrogant but it's the way it is, you assume that when you hand somebody over for say day care, that people know a lot about dementia, know a lot about [my husband] and that they're the experts. It's not necessarily so.  Another was when I realised that for example none of the information from the hospital about where the particular deficits in [my husband]'s brain were, therefore what his difficulties were, and therefore what his particular needs were.  None of that information seems to travel automatically to the people who are trying to give care and so the turning point for me was when I realised that I had to take the initiative and say 'Look however bizarre it seems this is what pleases him. You know, at autumn time, he likes to go around on the grass, picking up interesting coloured autumn leaves and then looking at them afterwards and then putting them, hoarding them in a box.' And that to him was a meaningful - don't ask me why - a meaningful activity, far more meaningful than the bingo or whatever.

And I wish that I had volunteered more information about [my husband] rather than just assuming that when I delivered him at ten o'clock that they knew what to do. They would tell me at the end of the day what they'd done with him. It never dawned on me that I should be saying 'Would it be possible if?' Then I used to say 'Is there access to a piano? Could he play the piano for a bit?' 'Oh yes there's a piano' you know,

And I think another turning point was a realisation that - and this comes quite late on - the carer is the expert. You know far more about the person you're caring for than all the doctors and the workers put together. You know the whole picture, you are the expert, and again, if that sounds arrogant, but a carer's voice must be heard I think in planning out what is right and proper for the person you're caring for. And if you feel that something is wrong then you've got to have the guts to say so, whether it's to do with the care, the medication, with anything to do with their well being, if you think that something is not as it should be, and it's very hard, but you have to speak up as politely, as firmly, but as firmly as you can. And that was another turning point because I just assumed that I was just a carer and everybody else was the expert. It's as though they all have bits of our jigsaw, but they don't have the [whole] picture on the box and the carer has the picture on the box and knows what it needs to look like.  

When he was first diagnosed he wrote in his diary 'So it's Alzheimer's. I hope when the end comes it's not too messy.' And I think I can be guided by that, for [my husband] and I have always thought along the lines of it's quality of life, not quantity that matters.  And so I've reached the stage now with [my husband]'s illness where he has no speech, he's lost his mobility, he has to be fed and washed and kept clean, he's doubly incontinent, he's doing a lot of sleeping and I guess the end could come in all sorts of ways and I've got to be prepared for it when it does come. But if the suggestion is that he should be artificially fed I think my answer would be 'No'.

I have also signed a declaration 'No artificial resuscitation in case of heart failure'. On the other hand if you'd said to me ten years ago at the beginning of this illness, in ten years time [my husband] [will] become immobile, speechless, doubly incontinent, unable to do anything for himself, and really has only got his music and nourishment and human touch as the three pleasures. He's also partly, practically blind as well, I should add, technically so, because his eyesight's fine but he's not processing what he sees. And if somebody said to me 'Does somebody in that state have any quality of life?' I think ten years ago I'd have said 'No', but working with him now, caring for him now, there is still quality of life, there are still things that he appreciates.

He likes the feel of the sun on his hands, he likes to see what he probably distinguishes as bright colours, but what they are he has no idea. He likes his music, he likes to be sung to, he likes to be played with in a way that you play with a small child and he loves human contact and cuddles and tickles and all these sorts of things. And yes there is still a quality of life there and that's why I would be against euthanasia but I would be for letting something happen naturally rather than artificially prolonging life. I hope I've made my stance clear because there's a lot of talk around 'What is quality of life' and it all depends where you're looking at it from.