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, hes lost his mobility, he has to be fed and washed and kept clean, hes doubly incontinent, hes 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. Hes also partly, practically blind as well, I should add, technically so, because his eyesight’s fine but hes 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 theres a lot of talk around ‘What is quality of life and it all depends where you’re looking at it from.

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 theres 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.

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 Id be map reading and Id say Take the second exit on the roundabout and hed 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 hed driven the wrong way down the M11, that really did for me, he made light of it by saying They were altering the junctionand 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 isnt 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. Hed been all over the place and couldnt 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 Dont ever let me drive again. And I breathey’d a huge sigh of relief. But what I would have done had he insisted on driving I really dont know.

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 thefinal phase of the illness, which isn’t anywhere near as difficult, well theres a bit of resistance from him now and again, but hes not aggressive, then I felt ready to have him back home again.

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 hed 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 hed gone, absolutely no idea which way hed 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 ‘Hes gone that way’ and at least wed 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.

Care staff in terms of the nursing home, day care and respite care, theyre working their socks off, they really are trying so hard but there arent enough of them and the one thing that a person needs is individual attention and its the one thing they cant give. And not enough care staff have up to date dementia training.

Misunderstandings abound. Theres a good example in the nursing home where every day, every afternoon this elderly chap would take all his clothes off in the sitting room. The staff would scurry around collecting up his socks and his trousers and stuff and then I discovered that actually he was a rower from [university] in his youth, and so of course, every day in the afternoon – because there would be no lectures in the afternoons – hed be stripping off and going off to practise on the river and therefore what he needed [now] was some situation where he could feel that he was doing that; going with it.

And there was another lady who was forever running away with the tea trolley and then it turned out that she was in charge of the WRVS team at the local hospital. So why couldnt she have a trolley of her own with some bits and pieces on it, to push up and down the corridors? And its this need to go into peoples history and find out who they are and to set up some kind of play that reflects the kind of jobs that they used to do. Its imagination isnt it with staff as much as training. So theyre lovely people trying very hard to do an extremely difficult job, but I do think more training, more imaginative solutions ways to finding more imaginative solutions would help everybody both the person with dementia and every body else who happens to be with them as well.

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 heads 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 hed be up the road, hed be a couple of miles away before I realised that hed 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.

And I think another very bad moment was when I had to tell his mother who was in her eighties, that [my husband] had got Alzheimer’s, because I’d pussy-foot around a bit because she was terrible worrier and I kept saying ‘Oh [my husband]’s got a neurological problem. And she kept saying ‘Oh he keeps going to the hospital, haven’t they found out what’s the matter yet, haven’t they found out what’s the matter yet?’

And then in the end, I mean in a way I was hoping that [my husband]’s mother would die before – because she was quite poorly – and that she would die before I needed to tell her because I think she knew what it meant because she used to work as a volunteer in a hospital and had seen dementia.

And having to tell her I think was a horrible moment because I think your child suffering with dementia must be almost worse than having your spouse, because still, you still see them as so much younger. Time and again she said ‘I wish I could change places with him. That was a nasty moment; it really was.

And to anybody now who receives a diagnosis I would say there should be some kind of automatic procedure whereby the GP or the consultant puts the patient and carer in touch with the nearest branch of the Alzheimers Society and also informs the Alzheimers Society that there is a newly diagnosed person in their patch.

Because I knew I was in denial, I didnt want to say this was Alzheimers and the Alzheimers Society eventually, through a mutual friend, came to me. So I think if you want help its there, its knowing where it is and its also the Alzheimers Society coming to you. So thats really around the first three or four years of the illness I would say. Well, two to four years after diagnosis I think you need a lot of help in the middle phase of the illness.

I first of all bought a book called The Vanishing Mind which gave me the sort of, well like the medical picture of what Alzheimers is and it was three years after diagnosis that this mutual friend put us in touch with the Alzheimers Society and thats the best thing that ever happened. I was given informative literature to read and I was drip-fed information, not all at once but for my needs.

The information came, the outreach worker contacted me, she came, she was on the end of a phone if I needed her and she would come on a regular basis and see how we were doing. And she educated me on how to deal with difficult behaviour, on how to deal with habits like hiding and hoarding and explained things, you know, that they are losing so much of themselves that they feel the need to put things that are important to them in a safe place and thats why your handbag ends up in the washing machine! And when its explained to you and you understand, then you can make allowances because your natural reaction is to think that the person is winding you up.

Certainly, the Alzheimers Societys literature, the advice sheets which were again fed to me, drip-fed to me, booklets as they were published were fed to me and my nearest branch was in the next county, so I couldnt go to any support groups. But she came to me, or to us, to help me with strategies for caring for [my husband].

I was so impressed with all this, that I joined a group in [town] and we worked to establish a branch in [town] because I felt I was so thankful for everything that was being done for me, I wanted other people in a similar position in this part of the world, to have a similar sort of support. So interestingly when I joined the support group I was perhaps a person further along the line and was able to help other people, rather than personally finding the support group helpful because other people were you know, not quite so far along the journey.

But hearing talks, like the one [name] gave on activities, because thats a thing that bothers carers a lot – What can we give our relative to do – and hearing that talk, every now and again youd have a big flash of light and I thought Oh if only Id known that. So my greatest source of information – and still is – is the Alzheimers Society, for everything, whether its legal, financial or caring problems.

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 wasnt 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

But the interesting thing to me was, at the point of diagnosis and at the next appointment at the hospital [when] it was confirmed that this was the most likely scenario, we were just kind of dropped into thin air. When I compare what a cancer sufferer might have, and their family, at the point of diagnosis, you know, where for us was the back-up of either a specialist nurse, or a telephone number to ring, or, I didnt even know of the existence of – well, what was then – the Alzheimers Disease Society at that point and I certainly had no idea where a local branch might be.

And I think we were all in such shock we needed people to come to us to help us, rather than ourselves having to go out in the highways and the byways to find help and I think thats happened to a lot of carers and a lot of patients, that they are, at the point of diagnosis, just turned out into the street and dropped into thin air. We went back to the hospital many, many times over the following two years and for umpteen psychometric tests. I was given my husbands scores and his results were conveyed to me by letter, but actually what I wanted and what I wasnt getting, were strategies for everyday living and how to help my husband to celebrate what he could do, rather than to get depressed with what he couldnt do.

Things like, given that the damage in the brain is going to be different possibly for every single Alzheimers sufferer, what activities should he avoid in case it produced not only danger but frustration and anger. And what parts of the brain were still intact and what kind of activities therefore would be pleasurable for my husband and not give rise to frustration, loss of confidence and then difficult behaviour which I was left to handle.

Not a lot. I thought that dementia was something that very elderly people got, equated it with senile dementia and that as bits of our bodies age so of course the brain ages and I had no, idea that it could attack someone in their forties, my husband was 49 when his started. Well now of course I know it can attack even earlier than that, so I associated it with somebody probably in their late seventies and eighties and I think I had a picture of someone sort of quietly losing their marbles in a corner, you know like grandma’s in a corner and she isn’t quite with it, you know.

I did not know anywhere near enough and of course now I realise people generally don’t. For example my cleaning lady who comes in to help, she said ‘I had no idea that Alzheimer’s was like this, if I hadn’t been so near it for so long. So I think unless the illness strikes someone very close to you, you don’t know what it entails and I think it’s the changes of behaviour, the personality which I think are the most unexpected features. Because, yes people in the olden days would just tuck folks away or put them into an asylum, or maybe people never just got to live that long in some respects, so there weren’t so many of them around.

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.

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 u or That’s a pretty colour you’re wearing toda, 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!

Yes I do. I think it’s probably, well at the moment I’m subscribing to two theories. I’m a believer in there being a viral element. If I go back to what I think is the very beginning. My husband had a one-off night time seizure out of the blue, sort of like a semi-epileptic do, and hed never been epileptic in his life and in the months that led up to that hed had a viral infection after viral infection, sort of flu-like colds and I think his immune system was so damaged by all that, well depleted by all that that the one-off night seizure may have caused the ultimate breaching or breakdown of the system, that’s how it seemed to me.

But when I look back two years before that he had a car accident, he was not injured, but he had quite a bad whiplash, it was an empty car transporter backing across a main road at night and in the rain and my husband could see the headlights of oncoming vehicles through the empty transporter and suddenly’ ‘What’s this fence in front of me?’ A dark country road and he crashed into the rear wheel of the transporter, the car’s bonnet was triangular, it was a write-off, he fortunately was wearing his seat belt and he had a slight bump on the front of his head and was jarred, but he was not taken to hospital, he clambered out, apparently unhurt.

And I do subscribe to the theory that, you can’t bash your brain about like that without doing something. Although there was no head injury worth speaking of but there was a very, very severe jolt and talking to a lot of friends that I’ve met through the Alzheimer’s Society groups, it’s surprising the number of people who had some kind of head injury several years before the Alzheimer’s kicked in. So, yeah, those are my two things.

My husband and I had identical life styles, absolutely identical. We were born in the same town, we are almost the same age, went to similar types of school, we went to university together and obviously when we were married we had a similar life style and we finished up with, for the last twenty-five years having the same job. So therefore sharing life style, food, routine, everything, why should he get it and not me, so theres got to be something there.

Theres no genetic thread in [my husband]’s family at all, theres no familial tendency, because often with early onset there can be a familial tendency, there is not in my husbands. He had one or two crazy great aunts but of a great age, but nobody who got it in their fifties. So maybe there is a genetic predisposition and that theres something in the environment like a car accident or viral infections trigger it, but I don’t think theres anything else. It’s the luck of the draw really.

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 hed played any longer but he improvised and it was very creative, hes always composed and improvised and that creative urge was there really right up to oh, six, seven years after diagnosis.

Even when hed 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 hed 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 hes 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 hed 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.

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.