Maybe old people don't want to be treated differently

S's dementia is classed as 'young onset' (as opposed to the former 'early onset' which might suggest you'll get it, sooner or later)  -  she was only 50 when she first had memory problems. Now we are often told that she and all the others like her are at a disadvantage as such provision as there is for dementia sufferers is almost exclusively tailored to the needs of 'old people' (because the vast majority of dementia sufferers are over seventy) and people of S's age who still have some awareness will not be interested in the same kind of activities as 'old people'.  I think this is correct.

But recently I started to think that maybe old people don't want to be treated as old people.  I'm older than S and I've no idea when I might think of myself as an old person but I'm pretty sure it won't be any time soon.  Maybe a lot of people think like that.  We're back to the person-centred approach again  -  people just want to be treated as individuals.  They should be.

Today is a special day

Not only is it Christmas Eve but it's also our Wedding Anniversary. This was not at the forefront of my mind as I was helping S in the bathroom just after she woke up and she grabbed my arm and bit me. It was not a deep bite - as with her more common aggressive symptoms, she clearly has some kind of degree of control as at the moment she never really hurts either me or her daughters, and I'm sure she could if she really wanted to. Often the peaks of aggression are followed by a demonstration of her utter frustration at the situation, usually expressed in sobbing, shaking and little screams. Then she usually becomes calmer. It's as though she just has to get the aggression and frustration out of her system. At least I'll be more aware of the possibility of being bitten in the future.

How can S still be helpful?

S's sense of herself - she still has one - includes, very firmly, a belief that she should be and is helpful to others. This is absolutely correct, she was a single mother from the time her kids were very young and a teacher whose roles were often specifically and always predominantly to do with caring for and helping those in difficulty of one sort or another. I believe she would like to still be doing this sort of thing and is frustrated that this is just one of the things that she can no longer do - or as she sees it - is not allowed to do. I have realised this from listening to numerous versions of a conversation where she is trying to sort out girls' problems (she finished her career, premturely, in a girls' school).

Her daughter and I have found that a sure way to get her co-operation, even when she's angry, is to ask her to help us.

I would love to find some other way(s) that she can be truly helpful and that we can keep praising her for. The cats we have acquired are one possibility. I agreed to the pressure from her daughters as I believe they could help to occupy and calm her but my line will be that by paying attention to them and stroking them she will be helping them - that will be her vital contribution to their care whilst I'll do the easy things like feeding them (though, of course I'll stroke them a bit too!).

If anyone else has any ideas - it's very hard - please let me know by commenting.

Trying to classify S's conversations

Following on from my previous post, I've tried to list all the different types of conversation:

1) With imagined people: You only hear her side of the conversation. Inbetween there is silence when she is 'listening' and then she will respond.The conversation will generally be lucid and coherent (in its own terms) with sometimes quite sophisticated vocabulary and syntax.

2) With imagined people: You hear both sides of the conversation. The conversation will generally be lucid and coherent (in its own terms) with sometimes quite sophisticated vocabulary and syntax.

3) With imagined people: You hear both sides of the conversation, though the other person's contribution often includes nonsense sounds or syllables, almost as if she can't be bothered to put too much effort in.

4) When following a conversation (with friends and family): she will contribute the odd word, phrase or occasionally sentence which is an entirely appropriate response.

5) When following a conversation (with friends and family): she will respond but what comes out is confused and seems to have little relationship to what is being discussed.

6) With me and her daughter, S will often have usually short but perfectly normal conversations. She rarely pauses to 'find' words and never uses the 'wrong word'.

7) Occasionally she will have longer conversations with me, again talking fairly 'normally'.

Most of the day now is spent on 1, 2, and 3 though obviously if friends and family are around a lot, there tends to be less of those conversations.

Something that calls out for research

Another puzzling thing, and one that you'd think might repay research, is the fact that when S is having her conversations with imagined people (we could call them hallucinations though I don't think she usually sees them) or just talking to herself her language is often lucid, coherent and complex. Yet when she is more 'herself' and trying to join in a conversation she often struggles to express herself and people listening usually struggle to make much sense of it.

Of course, some of it may be to do with familiarity and repetition - many of her conversations are constantly recycled - but new variations and new topics do come along and she is equally sure-footed with them. It may also be that in some way she feels more in control - she is after all she is making up both sides of the conversation. Another strange and interesting thing is that sometimes there's a silence whilst she's listening to the 'other person' but sometimes she does both sides of the conversation.

I'm wondering if it's ever occurred to people to study this strange phenomenon?

The drugs don't work

Well, not quite true but it does seem to be the case that the best known drugs used to treat dementia symptoms are pretty poor. People carry on prescribing them and consuming them because what else are they going to do?

These two examples are from the Alzheimer's Society website:

What are the benefits of cholinesterase inhibitors?

In clinical trials of all three cholinesterase inhibitors, people taking the medications performed better on memory and thinking tests than those taking a placebo, or inactive substance. The degree of benefit was small, however, and more than half of the recipients showed no improvement at all.

What are the benefits of memantine?

One clinical study showed that people taking memantine showed a small but statistically significant improvement in their mental function and ability to perform daily activities. But study participants with lowest cognitive functioning showed no improvement on either daily activities or overall function.

This kind of thing makes it all the more puzzling that there's a big campaign to encourage people to come forward and collect their diagnosis so that they can be 'helped' - presumably with these and equally pathetic drugs.

This struck such a chord with me

Extract from information on the excellent website of dementiacareaustralia :

Challenging the Child-Myth of Dementia

There is a strong myth that people with dementia become childlike and that they don't know what is best for them. Not only is this a myth, it is also an unnecessary stigma.

Though the behaviour of a person with dementia may resemble that of a child, the two are worlds apart. The social inhibitions, which normally regulate our responses, lift in a person with dementia so that they may share the same spontaneous joy and appreciation of a child. However, it is crucial that you continue to see the person with dementia as a whole person, one who has lived a long life, contributed to society and who carries a backpack filled with life-history, experience and wisdom.

If you fall into the trap of thinking of them as a child, it will affect the way you treat them, which in turn will affect the responses you get back. Thinking of the person with dementia as a child will ‘program' your whole approach. It is likely you will talk to the person the same way as you would talk to a child and they are likely then to become defensive and respond with anger.

I don't consciously believe the myth but you hear people who do all the time and it inevitably has some effect on you. This is why it's so important to try to see the whole person and to blame the condition rather than the person. I'm sure I do sometimes talk to S as I would to a child but her usual response - 'Yes dear, I'm a big girl now!' - quickly brings me to my senses. It's not a childish response at all, but an adult using a humorous if sarcastic remark to make her point.

Direct questions

One oft-repeated piece of advice about interacting with dementia patients is to avoid direct questions - easier said than done, I admit. But what do the professionals do when 'assessing' a person with dementia? Yep......question after question.

It's easy for the professionals to make promises...

....but delivery is a different matter. Most of the support promised has failed to materialise - 'it's been referred but the woman who deals with it is away for twelve days now' - and there are clearly many people ahead of us in the queue for things like 'aids and adaptations'. Not a big problem in that particular case as I have organised vinyl floor covering in the bathroom and handrail on the side of the stairs that hasn't got one.

The only professional who has visited was a psychiatrist who saw S when she was in a really bad way and assumed that she was like this all the time. I'm finding that an awful lot of assumptions are being made. We mentioned to one senior nurse who visited that S was eating sweet stuff to be told that 'they' develop a sweet tooth. Well, some of 'them' may but S has always had one. I keep having to remind myself that the Prof always told me that I was the expert on caring for S which was/is comforting but I always feel that there must be some professional somewhere who is prepared to really look at the whole person and find ways to make a difference. I have been lucky enough to find such people on an internet forum and even at a distance they show more understanding than most of the professionals locally. And even the Prof, a leading expert, seemed unable to offer much positive advice when we last saw him.

Not as bad as expected

The week, that is. I feel things have stabilised to a degree. S is eating and drinking a little bit more - still very hard work to get her to do so though. Also she's had periods this week when she has been calm, happy and more 'herself'. She continues to really perk up when with friends and family, as long as there aren't too many children/conversations. She can sit still for a considerable time trying to follow the conversation and even contributes to it after a fashion. She loses interest in walking up and down and having the conversations with the people who are causing her so much trouble. We've twice got her dressed and out of the house for the first time for over a week. Her daughter who lives fairly close by has been very supportive and given up most of her evenings to help, and to support me.

One of the things that has developed over the past few weeks is that S's outlook (she is normally very positive) is very negative at times. Whenever friends are expected to call, she is convinced that they won't and tells me that she has spoken to them and that they've told her. It's the same when we're going to visit family and friends. I can't think of any solution to this but maybe it will be one of those things that just come and go.

A pretty good day

Guess what? The meeting with the Young Onset people was very positive. First they saw S at her most dire as she had fallen and hit her head, not badly I'm glad to say, and I was just attending to this when they arrived. She was sprawled on the floor in a very uncomfortable-looking way and just told us all to go away. She appeared to be 'worse' than they would have expected from reading the notes.

They had a number of proposals:

a referral to a nutritionist for advice (via the GP) on what is now almost an eating disorder (it's very hard to get her to eat and drink at all)

a carer assessment for me, to discover what my needs are

a fresh psychiatric assessment for S in the light of all the recent changes

advice and action from 'aids and adaptation' people, e.g. extra stair handrail, changes to bathroom etc

a brokerage system which would put us in touch with trained and vetted people we could employ on an hourly basis to e.g. come and put S to bed and watch over her, particularly if she does not go to bed, while I could get a good night's sleep

a sensory team who can advise on things that would compensate for the visual and perception problems, e.g. they can test for which colour crockery is most likely to be most easy to see

help with assistive technology - sensors and alarms to alert me to problems when I'm not in same room

So lots of things to go at. I've started on some of them today.

The final thing that interested me is that it was suggested that a couple of the drugs S tried, without effect, in the earlier stages, might be of more use in slowing down the progression in this stage, though I'm still very wary about drugs after the wretched experience with Amitriptyline.

S had one of those evenings when she calms right down. She enjoyed watching a Simon and Garfunkel DVD, singing along, and later in bed she was talking and singing with the positive crowd - no sign of the ones she is always telling to get out.

This is when you know it's bad

When you look back on last week and know that for all its torments, this week is likely to be worse.

There is one glimmer of hope though. This afternoon we have an appointment with the local Young Onset Dementia Service. They are supposed to be our 'single point of access' for support in the future. Virtually all the support we've received up till now has come from family and friends. It has been superb and vital but obviously there is a limit to what they - leading their own lives, dealing with their own problems and, in some cases, living far away - can do.

Now, in our twelfth year of dealing with the problem, we need professional help.

I'm trying not to pin too many hopes on the meeting though. I know resources devoted to these conditions is pitiful and 'young onset' appears to be one of the least well-supported areas, with many 'professionals' apparently pretty ignorant about it.

Still, anything they offer is likely to be a help.

At the moment I keep bursting into tears when people are asking me about S. I think it's the lack of sleep.

That's what I'm trying to find out

All S's agitation now centres around a group of people (who she thinks are present) led by the infamous Mr Diamond (names have been changed!) a dentist she used to swear by until he somehow offended her. S often talks about herself in the third person and there are numerous variations on: 'All she wanted was ............ but she wasn't allowed to. Oh no!' I said to her recently 'Who's stopping you?' The answer says it all: 'That's what I'm trying to find out.'

Somewhere inside there's a rational person trying to make sense of it - just like I am, in fact.

I can see that it stems from her having to have things done to her and for her. And who wouldn't resent that? From time to time, she's asked me let her try and do things again, e.g. make coffee, wash herself in the bath. It's never successful, though I try to be positive. Even yesterday, during a good spell, she was talking about this.

But of course it makes no sense either to the so-called world experts, though they won't admit it. Nobody really understands the causes. No-one can explain why the brains of some who have suffered severely look relatively normal post mortem and why others whose brains show 'all the signs' of the condition have not had dementia symptoms. So can we even really say they know what the signs are?

When S first started experiencing delusions she would often be talking to people who were 'helping' or 'trying to help' her. Now, from what she says, these people seem to be letting her down - just like the prof, the doctors...and me.

A taxing time

I'm having one of those periods where all sorts of things are going on and it's hard to keep up. I feel you can get used to most things if you have a minimal time to adjust but if a lot is going on at once it's very hard. Sunday night going to bed was the worst ever. I started to try and get S to bed at 10 and she finally caved in at 3. During these 5 hours there were times when I almost got her into bed and then something would distract her and she would be off again, walking up and down. I was very tired myself but knew I could not fall asleep and leave her still awake - too many risks. So from time to time I lay down hoping she would get the idea but to no avail. When we got to bed we slept well as, currently, we usually do and got a decent length of sleep. But next day, all morning and some of the afternoon saw S walking up and down complaining about imagined issues to imagined people, with varying degrees of agitation. Then somehow, and I can never work out how, she got herself back into a happier state and we spent a very pleasant late afternoon/evening, mostly watching music DVDs when she was as cheerful and 'herself' as she's been for quite a while. All this was possibly helped by the smallest possible dose of Valium (the doc had given us some but I'd been reluctant to use it in the light of our previous medication disaster) though she only had that after she had got back on a happier track. When we went to bed she was chattering away to herself and/or others and clearly enjoying the conversation.

Tuesday was pretty much a disaster. 12 hours of the complaining mode is incredibly wearing but that's what we got. S's daughter came and helped out in the evening and this was very helpful to me but neither she, nor another dose of Valium, could alter S's mood. And another problem also loomed large. We had both noticed a few days before that S was leaning over to the left when walking. I was concerned that this was a symptom of the condition. However, over the weekend she was walking more normally. But on Tuesday she started leaning over to the right and holding her left hip area. She was also leaning forward. Because of this very awkward gait she was also bumping into things. We started to get very worried as she seemed to be on pain. At 9.45 we phoned the night G.P cover service to be told that we could be waiting for 6 hours. After waiting for 2 hours we decided to try and get S into bed. It took both of us to get her upstairs and was very difficult as she was seemingly unable to stand up properly, though she wasn't resisting our efforts. Eventually, we managed to get her into bed. After phoning the night service and telling them that they were no longer required, I went to bed fifteen minutes after S. She was still awake, chatting away and chuckling, even singing what seemed to be playground-type songs which I didn't recognise. It's still extraordinary to me that this can happen after a truly dreadful day.

The next day it was impossible to get her to come downstairs. I took her food and drink which she barely touched. She was clearly physically uncomfortable and very depressed - not surprisingly. I called the GP and asked for a home visit. S alternated between laboured walking, lying or sitting on the floor and, when persuaded, sitting in chairs. She mostly wanted to be left alone so I just checked her every so often. She was due to go to a friend's for aromatherapy massage the next day so I phoned to cancel. The friend offered to come round. She was very good - has experience of mother with dementia - but neither of us could really get anywhere with S.

Her 85 year old dad and his partner were due to visit in the early afternoon so the friend left. S's dad had not see her for a couple of weeks so when they arrived I tried to explain that they might find S's current condition shocking - which they did. She didn't really respond much to either of them. Then the GP arrived. Both S and I have always rated him and she was much more co-operative with him, getting on the bed and allowing him to probe and prod her. He ruled out any hip damage and found that her spine was tender. He said he would drop off prescriptions for pain-killers and stuff to rub in at the pharmacy. He suggested she come downstairs and she did, without too much difficulty, though he and I helped her.

She rapidly improved in the company of her dad and his partner, eating and drinking and engaging in conversation. I then got her to take the small valium dose and this, along with a another visit from her daughter, may have contributed to the fact that she remained relatively calm and stable for the rest of the day. She is now in bed (Thurs a.m.) still asleep. She hasn't had a long sleep like this for a while but the last one was very beneficial so I'm keeping everything crossed. I've got family coming over soon and her daughter said she would call in tonight so I know I'll be well covered for support today if I need it.

My feeling about neurologists exactly. (My recent experience was not the only one.)

Before the advent of CAT Scans and MRI -- and often even with them -- a neurologist would perform a lengthy physical examination in order to tell what part of the nervous system was involved, 'localizing the lesion'. Of course, most conditions were -- and still are -- untreatable. A famous neurologist in the fifties once described his job as "Diagnose, adios."

Two neurologists are hot air ballooning when clouds come up and they realize they're lost. They go lower, and suddenly the clouds part and they see that they're passing over a field where a man is on a tractor.

One of the neurologists leans out and yells, "Hey! Where are we?"

The man on the tractor looks up and shouts back, "In a balloon!"

Then the clouds swallow them up again. The first neurologist smiles. "This has been a great day! We saw good scenery, we put back some brewskies, and now to make the day complete, the first guy we meet is a neurologist too."

"Wait a minute!" interjects his friend. "That looked like a farmer to me. What makes you say he's a neurologist?"

"Well, think about how he answered our question. He gave us precise localization and it didn't help a bit."

A dreadful negative experience

I've hardly had time to think this through properly but we had a truly awful experience at the Memory Clinic last week. We had a phone call asking if, because we had not yet had any contact from the community mental health team (still haven't), to whom S had been referred, we'd like to have an appointment with a neurologist (it had just become available). I did wonder how a neurologist could help at this stage but felt we couldn't pass up any possibility, so agreed.

We arrived fifteen minutes early and were finally called in an hour later. S did very well waiting, getting no more agitated than me! When we finally went in, I explained that the hour long wait was just what someone with S's condition didn't need. There was a cursory apology. Then he said that the 'full assessment' would take one hour (bear in mind that S has been continually assessed by the Prof and his team since 2000) and I wondered why we were there, whether there had been some mistake. We discussed whether we would leave. Then he said it might be completed in half an hour. I wish we'd left but we are so desperate for help that we decided to stay.

He then proceeded to speed read S's twelve year medical history in twelve minutes, nodding sagely from time to time, while we sat there like dummies. I've come across this before with medical people. Absolutely no preparation. That's appalling time management and an utterly disrespectful and insulting way to treat patients.

He then started the assessment, trying to talk to S. Not surprisingly she was in no fit state to answer his questions. He soon had to talk to me. I trotted out all the information he asked for and which we had told the Prof three or four weeks before. The significant difference was that whereas the Prof's approach is firmly person centred and he is as interested in what the patient can do as what they can't, the neurologist was very clearly working to a check list and looked as though he was gratified each time he was able to enter a black mark. So whereas the Prof was genuinely impressed that S was so interested in the US Open Tennis, not so long ago, that she was able to sit through and enjoy two matches which each lasted over three hours, the neurologist wanted to know if she would have been able to remember the results the next day. At one point he wanted to start testing S with the kind of questions that she has been trying to answer for twelve years. I told him that the clinic psychologist had realised that this was not helpful several years ago and he reluctantly desisted. He then produced a little book and showed S, who he already knows has some problems with vision, four poorly reproduced passport-sized B & W photos of a very young Tony Blair, Bill Clinton, Parkinson and someone else, can't remember. Did she recognise them? No. Did she not recognise this one - pointing to Blair. No. But what he didn't learn was that S often follows the TV news, and comments appropriately at times. I wouldn't mind betting that she would recognise Gordon Brown if he ever appeared now.

Anyway, I could see that he was working towards a diagnosis - that's how they see their job. So when he started to sum up, I asked him if anything he was going to say would offer us help in terms of treatment. The answer, of course, was no. Then he said that we deserved certainty, we should have a diagnosis - even though we hadn't asked for one - and that S has Alzheimer's. He said that people at the clinic had been beating about the bush (he didn't use that phrase but that was the gist) for too long, looking at all sorts of other possibilities (quite a sensible approach, I would have thought) and saying that S was atypical when she wasn't at all, it was just that the memory clinic staff did not see many young onset patients - if they had seen those that he has seen they would realise that S's symptoms were not atypical at all.

In case I haven't made this clear previously, we knew that S has some form of dementia, that it is progressive and that there is no treatment. The fact that some arrogant, patronising know-all has given it a name makes not one iota of difference.

All this raises a lot of issues which I will return to in future posts. Perhaps one of the most important is the fact that there is only one way in which Alzheimer's can be positively diagnosed and that is post mortem.

The difference between being seen by the Prof and this robot is that when you walk away from an appointment with the Prof you feel positive, even though there is rarely anything substantial to feel positive about. When we walked away this time, we felt totally negative about the experience. Essentially, the difference is about being treated as a whole person rather than a brain with a body attached to it.

Always in the wrong

One of the most frustrating things about being in S's position must be how often she appears to be in the wrong. Because, amongst many other things, her memory is very deficient, I will nearly always remember things better than her (not because I have a great memory but because I have a 'normal' one). Quite regularly, we get into arguments about something that has happened and I try to remind her of what was said or done. Obviously, I don't do this unless it's something that matters - often I just let it go - but still she regularly gets very upset about it. There was a problem this morning when I asked her if she was ready for her breakfast. She said she had already had it. As I wanted to make sure she did eat her breakfast (she's not been eating normally for some time now) I had to tell her that she hadn't had her breakfast and that I knew because I make her breakfast.

A similar problem arises quite often when she believes that she has told me something and she hasn't. I know this is occasionally a problem in many relationships ('You don't listen, that's your trouble!' ) but the difference is that I nearly always know for sure that she hasn't told me because it will be something like her saying that she has told me she wants to go to bed when I have been regularly asking her to come to bed for a couple of hours. There's no doubt at all that she believes she has told me.

Dementia timebomb hoax

The media are full of this today. It's not a hoax in the sense that there isn't a massive problem further on down the road as more and more of us live longer and therefore more and more of us suffer from dementia, but the emphasis of this campaign launched today is the need to get a diagnosis and then.............what?

This perhaps.

More on Tamoxifen

I've not had time yet to find the very detailed letter referred to in the previous Tamoxifen post. However I know the main problem with trying to pin down whether Tamoxifen can have adverse effects in the brain. It definitely crosses the blood/brain barrier. But the complication is that sometimes Tamoxifen acts like Oestrogen and sometimes it acts as an anti-Oestrogen. Its anti-Oestrogen manifestation is what makes it useful in relation to breast cancer, or at least in those breast cancers where Oestrogen plays a part.

It is unclear which effect Tamoxifen might have when it reaches the brain. A further complication is that it is unclear whether Oestrogen itself is beneficial or harmful to the brain; the research gives contradictory results. Unsurprisingly, in these circumstances, the small amount of research that has been done to try and determine whether Tamoxifen is good or bad for the brain is also inconclusive.

So someone like S who, on medical advice, was simultaneously taking Oestrogen (HRT) and Tamoxifen could have been adversely affected by either or both Or presumably the effects could have cancelled each other out, or they could both have had a beneficial effect. And her condition might have nothing to do with either of them!

It interests me that American scientists wanting to degrade the memories of mice used Tamoxifen to do so. These were 'transgenic mice' that had had their genes interfered with to enable this 'unusual' response to Tamoxifen. But this surely raises the possibility that humans with a particular genetic make-up could be similarly affected by Tamoxifen?

It is amazing to me that these scientists already knew about a link between Tamoxifen and memory yet no-one researching memory problems in humans seems to have made such a connection.

I will find the link to the report and post it here.

Tricks of the Imagination

One of the disturbing things that has developed recently is that S now appears to be carrying on conversations with other people who are not present. This seems to be a step on from talking to herself. I have no problem with that - all of us talk to ourselves, in one way or another, and most, at least occasionally, do it out loud. Also, S often appears to be happier after talking to herself so that's very good.

The talking to others is different. It happens a good deal in quiet whispers when we're in bed and I, at least, am trying to get to sleep. I can't hear much more than the odd word but what particularly strikes me is that the talking seems to be much more coherent than many of the conversation that she has with me and other 'real' people these days. The Professor, after checking that these were conversations - 'Does she talk and then pause, then talk again?' (answer, she does, which distinguishes it from talking to herself) - described this to me, and S, as 'a trick of the imagination'. I found this helpful and I think she did, though she's probably not concerned about it anyway. I have already spoken to her about 'tricks of the brain' when she insists, for example, that a stranger in a restaurant abroad is an old friend, and keeps smiling at them. All of us have brains and imaginations that sometimes play tricks on us, particularly at certain times or in certain moods. It's just that people with a condition like S's experience this more often and find it harder to distinguish it from 'reality'.

The Professor explained that some doctors want to suppress these conversations and that anti-psychotic drugs can do this but he, and others, do not agree with this approach as there's no harm in it - in fact, as in S's case, it seems mostly helpful and often sounds as though it might be a device for trying to work things out. I agree wholeheartedly with the Professor's approach, though I am sometimes tempted to tell S to shut up and let me get some sleep!

It also occurred to me that if a child has imaginary friends and carries on conversations with them it is usually regarded as harmless, even charming. There's an understanding that it's something they'll grow out of, but this perhaps clarifies why it is disturbing in an adult - they won't grow out of it and you wonder what will come next.

Anyway, it's just one of the things I'm learning to live with.

Disorientated in space and time

This is one of the most disabling effects of the condition. S's perception of things she sees is often not very accurate. She finds it hard to be sure where the edge of a step is, for instance. When she is getting into bed I often have to get her to reposition herself so that when she lies down her head will meet the pillow. If I try to hand her something, her glasses for example, she will frequently get hold of my hand rather than what I am handing her. This was disconcerting when it first happened but I suppose I'm used to it now. S realises that something is not right but can't sort it out.

S lost the ability to tell the time some years ago. Then she developed an obsession with clocks and watches. She would want to buy every clock and watch she saw. She had an idea that she would be able to relearn how to tell the time. I had to call a halt eventually when we had about four - fortunately cheap - watches and a similar number of clocks. We had some heated exchanges as she could not remember how many clocks and watches we already owned. Often those she wanted to buy would not even have been suitable if she had still been able to tell the time - they had Roman numerals, or no numerals at all.

Now she still has some concept of whereabouts we are in the day but, for instance, the times when she wants to go to bed can vary between 8 and some time after midnight. Her getting up times are similarly varied. Often these things do not matter too much, though when I'm feeling tired myself and cannot get her to come to bed it's rather frustrating - there's absolutely no way I can go to bed without her.

In public discussion of the condition the focus on memory loss - the most obvious symptom - often leads to these other symptoms being overlooked. Everyone knows that eventually you 'lose your marbles' but possibly not everyone appreciates the gradually disabling effects of the difficulties that arise when the brain just cannot accurately interpret the information it gets from the eyes, for instance.

A torrid few days

Things have improved. We've now had three days when S has woken up more normally and we haven't had the 'Get out!' outbursts. There have been one or two flashes of aggression when I've been trying to help her but mostly she has been reasonably happy, particularly when we've been with other people.

The Professor, who only does a day a week at the Memory Clinic now, phoned me at 9.15 on that day i.e. at the earliest opportunity. He was very concerned and did not question at all the idea that such a small dose could cause such havoc. He was fairly encouraging about there being no lasting effect and this seems to be the case.

S has now been referred to the district community team, so we await contact from them. Apparently the team is made up of people from various disciplines and we will get regular visits which is welcome - although it has been reassuring to know that we have had advice from a leading expert, we have seldom seen the Professor more often than once a year.

You never know what to expect

And that's one of the most difficult things that you have to live with if you're caring for someone with this condition. At a recent consultation with the Professor to discuss the latest decline, we mentioned that S does now seem to have symptoms of depression, not really surprisingly. Knowing that S is very sensitive to any kind of medication - she very often gets side effects - he said he would review her history and suggest something to the GP that might help with her mood. We duly got a call to say that a prescription was ready for collection.

When I looked at the possible side-effects of the medication, I was amazed at the number of them and was struck by how many of them were things S already suffers from at times and also, and this is an odd thing about many drugs, that some of the side effects would be difficult to distinguish from symptoms we were trying to alleviate, e.g. 'feeling confused, difficulty concentrating, feeling disorientated (not knowing where you are), delusions and hearing or seeing things that are not there (hallucinations)' - just what you need more of when you have this condition!

Anyway as the dose recommended for S was less than half of the normal adult dose, I thought it unlikely that there would be side effects. Needless to say, I didn't mention the side effects to S.

She'd had a good day, one of the best for a while, fairly lucid and aware. I gave her this small dose before bed.

In the morning she woke up to go to the loo, then I helped her back to bed. She was quite lucid at this point, though she did tell me several times that she just wasn't right. I came downstairs, and left her to sleep, as I often do. The next thing I heard was a scream, 'Get out! Get out, all of you!'. At first I thought it was the woman next door as she has three kids and often shouts at them like this. I'd heard her shouting at them to eat their breakfast, as usual, but hadn't paid attention to anything else she might have shouted.

When I heard the same cries repeated, I realised it was S and rushed upstairs. She was lying quite still, apparently asleep. I was puzzled, but left her to sleep.

The next time it happened, I went straight up and she was sitting up in bed. I tried to comfort her, verbally, and she screamed to me to get out, which I soon did. All went quiet and there were one or two further outbursts. Eventually I heard her moving about. I went up and she was much more 'normal' though she had some idea of what had been happening and was a little anxious, understandably. By this time I had spoken to the Memory Clinic and was told that if it was the medication, the effects should pass in a day or two. They advised me to stop giving her the med (which I'd already decided to do).

I told S all this and reassured her. For the rest of the day, I didn't let her out of my sight. We mostly watched music DVDs and she was fine, just like she'd been the day before. At one point when I was helping her with the toilet there was a brief recurrence, aimed mostly at me, which quickly passed.

This morning, just as I was thinking that we were probably out of the woods, I heard again the familiar words, 'Get out! Get out, all of you!' But this time it definitely was coming from next door! Our neighbour had her front door open (right next to our front door and almost directly under our bedroom) and was clearly trying to hurry her kids out. She repeated the words, word for word, several times, increasing the volume each time, then slammed the door - they always slam it.

A few minutes later, I heard S! She was using the same words, with a few bloody hells thrown in. This time I let it run its course and phoned the Memory Clinic (they'd asked me to report back). I was told again that it might take a while for any effect to wear off. I was slightly reassured. Eventually S came out of the bedroom. I was able to discuss it with her quite rationally and to reassure her that we should soon be out of the woods. We had what passes for a normal day. There were two occasions when I thought she was going to start up again, but they passed in an instant.

Now I'm bracing myself for what might happen tomorrow, wondering whether next door will be a bit quieter or whether, as S has gone to bed very early tonight, she'll wake up before the next door kids have to leave for school and the lack of this 'trigger' might eliminate the problem.

It's all just so weird. Sometimes you start to doubt your own sanity.

There's usually something good to hang on to though. We have talked a lot during the day about this latest problem and S keeps telling me that she is really trying hard, and she is, usually quite successfully.

Possible causes/contributory factors 3/ TAMOXIFEN

Tamoxifen has been in use to treat breast cancer patients for several decades. Typically, it is used, either alone or in combination with chemotherapy, to treat women following surgery and appears fairly successful in preventing a recurrence of the disease.

S has not had breast cancer, but because her mother had it, and at a fairly early age, S has had regular mammograms and was invited to participate in the IBIS study designed to test whether Tamoxifen could have a protective effect against the development of breast cancer in women who might have a genetic pre-disposition towards the disease. (Actually, her mum's cancer was treated before there were tests to determine whether a particular cancer might benefit from Tamoxifen.)

S decided to participate in the trial. She was on HRT at the time, mainly because her mum was thought to be suffering from osteoporosis (though it was later decided that she wasn't). Those running the trial were aware that she was on HRT.

During the five year trial, S started to develop memory problems. She became convinced, before we ever knew anything about a possible connection, that Tamoxifen was the culprit. Shortly before the trial was due to end, she stopped taking the tablets (which might of course have been a placebo as this was a double-blind trial). Somewhere around this time she stopped the HRT also.

As things got worse, I started looking into Tamoxifen and found a surprising number of references to a possible link between Tamoxifen and memory problems. S eventually sought to discover whether she had actually been taking Tamoxifen or a Placebo and it was confirmed that she had been taking Tamoxifen.

We mentioned all this to the Professor at the memory clinic and he certainly didn't dismiss it out-of-hand (as he was quite prepared to do with other ideas).

I tried to find out from IBIS whether they had asked people on the trial if they had noticed problems with their memory (they sent out an annual questionnaire). It turned out that they had not though, interestingly, I understand that they do ask a question about this when surveying participants in the IBIS2 follow-up study testing Anastrozole, an alternative to Tamoxifen.

Eventually we were invited to meet a Professor who was one of those leading these trials. He was a very personable guy who thought S's mum might have been one of his early patients. I raised some of the things that perplexed me about the drug and its possible effects and he, very charmingly, answered them - up to a point though the answer often amounted to 'we don't really know'.

In a follow-up post I will summarise the letter he sent us following our meeting, when I have unearthed it from my increasingly chaotic 'filing system'.

Now I must go and wake S up as, for the second day running, she has slept well past noon.

At least, one way or another, she has so far avoided breast cancer. There's always a bright side if you look hard enough.

Possible causes/contributory factors 2

As I said, S has had many blood tests over the years and evidence of various different viruses has been found. Amongst these are Herpes types 1 and 2. It's common to say that type 1 affects areas above the waist and type 2 below but when you look into it they both seem able to cause problems at different places in the body, and they are implicated in lots of diseases, though this does not seem as well-known as it should be - probably because medical science, and big pharma, have very little to offer by way of eliminating them or even lessening their effects.

Some studies appear to show a link between Altzheimer's and the Herpes virus though the significance of this link is not yet clear. Presumably there could be a similar link with other kinds of dementia. Dr. Itzhaki, a British based researcher who has helped to establish the link, has concluded, "Our present data suggest that this virus is a major cause of amyloid plaques and hence probably a significant etiological factor in Alzheimer's disease. They point to the usage of antiviral agents to treat the disease and possibly of vaccination to prevent it." Sadly, it appears that further research has stalled because of lack of funding.

Use it or lose it

Is another lesson - for all of us. Back when S was able to write, I'd get her to do a few lines on postcards for her friends and family when we were away. The last to be written showed much more regular handwriting than the first. I would point this out to S and we'd agree that she should try and do some writing regularly so that she didn't lose the ability. But whenever I tried to get her to practise, she'd either avoid it or give up fairly quickly. Now she doesn't know how to hold a pen.

Latterly I've got her to sign her name on Christmas cards. Because only about one out of three signatures were successful, I'd get her to write on labels and we'd cut the good ones out and stick them on. Again, the success rate rose as she practised. But I don't think she was able to do this last year and it wouldn't even be worth trying now - too upsetting even if she agreed.

It's the same with walking. When the weather is decent, I've managed to get her out for walks and sometimes, even recently, done five to seven miles a week. The more we do, the better, more normal, her walking usually is.

When we recently saw the Professor, we mentioned that her daughter, who probably doesn't do walks with her much further than from the car park to the shopping centre, felt that her walking was not normal. She seemed all hunched up. The Professor said that this was a result of the condition having progressed. I'm sure he's right but I also know that if only I could persuade her to walk regularly, this deterioration in her walking ability could, at the very least, be slowed down.

Today, our first partially sunny day for ages, I tried to get S out for a walk. She agreed initially, but then changed her mind, and my efforts to change her mind again were unsuccessful. She said I could go on my own, which wasn't the point and, anyway, I don't leave her alone now unless I absolutely have to, and then I would only go out for a few minutes.

Several hours later, she is still sitting in her dressing gown having lost yet another opportunity to make some impact on her condition. But she seems quite happy, whispering away and smiling to herself.

Remember - use it or lose it. Most of us have no excuse.

Sometimes helping is not helpful

One of the things I've learnt, and I wish I'd understood it sooner, is that helping S when she is having difficulty with some task is not necessarily a good thing.

Typically, something will become harder for her, let's say some aspect of getting dressed. If you follow your natural inclination and help her, she will let you. I won't say that she's happy to let you because, initially, she still feels that she should be able to do it herself. But as time passes, you do it more and more and she does it less and less though still, on occasions, will be able to do it without help. Over time though, what started as hard becomes very difficult and then impossible. One more skill is lost.

Now, I try much harder to resist the temptation to help when I think that she might just be able to do it herself. But still I often intervene as she is finding it so frustrating.

There's no point in dwelling on these things - you can only do what you can do - but if I was starting again I would try much harder to preserve her independence at all cost.

If you've seen one person with dementia......

........you've seen one person with dementia. I read this somewhere and keep being reminded of it when hearing about other people who have the condition. I find it comforting somehow that there are so many differences, so many individual people. Yes, I know it always ends in the same way. But so, as we all know, does life itself.

S has a lovely smile and a good sense of humour

So it's sad when she looks really down about something that's gone wrong or just because she knows that she isn't functioning properly. But she still makes and enjoys jokes! Some of them are old chestnuts, family sayings etc but she still sometimes makes a new joke which always amazes me, considering that often she has great difficulty in saying the simplest things.

Slipping away from me

When we're out walking, I always offer S my arm and she hooks her arm through and holds on. We do this because when we walked side by side she would always fall behind. I would then slow down for her to catch up and - guess what? She would slow down even more so that we practically came to a standstill. I would point out to her that this was what was happening and we would start the process all over again. With the same result.

So the way we walk now is better. But, after a while, I feel her hand gradually losing its grip on my arm, as if she is slipping away from me. At the moment, I manage to get her to hold on.

Possible causes/contributory factors 1

Prior to S's condition really becoming apparent, there was a decade or more when she regularly had debilitating viral infections which often kept her off work - a couple of times for long periods. During these times she had various tests when different dodgy viruses were found in her blood tests. The symptoms were sore throats, earaches, constant fatigue, headaches, muscle pain, weight gain and dizziness.

One thing she has never been tested for is Lyme disease. This is a contentious topic, it seems, but it is clear that Lyme disease - which is spread by a tick bite - can induce these kind of symptoms, sometimes many years after the initial tick bite. And the end stage of serious infection is a condition involving dementia.

At the age of 18, S spent a year doing VSO in Ethiopia where Lyme disease is endemic. During her time there she was ill with the same kind of symptoms as those mentioned above and was thought to have altitude sickness.

In the late 1980's, S spent 3 weeks in the Philipines, another area where the ticks that can cause Lyme disease are found.

We have mentioned all this to the Professor at various points during the last few years. He did not seem particularly convinced by the Lyme disease possibility but was for a long time of the view that S's problems could be the result of, or could have been exacerbated by, viral-type infection (actually, I believe that Lyme disease is caused by bacteria though the symptoms are similar to viral diseases). He actually referred us to a colleague who was supposedly investigating any possible link though this did not really get us anywhere, maybe because the guy - who seemed to have a penchant for diagnosing difficult conditions - was actually an expert in fungi, rather than viruses. He did blood tests which showed the presence of both Herpes viruses, of which more later.

So we never really got anywhere with this line of enquiry, but there remain unanswered questions about the illnesses that S kept getting, what caused them, and what the long-term effects might have been.

Interestingly, although still gets very tired at times, virtually all the other 'viral' symptoms have long since disappeared. She is seldom 'ill' now, apart from having a dodgy brain!

They should really find another name

A stupid 'specialist' to whom S was referred when we were applying for ill-health retirement stated in an illiterate report that she appeared 'not so much demented as depressed' - this when she had already been attending the memory clinic for several years and when regular tests and several scans had shown that there was a real problem. No-one else felt that, at that time, she was depressed in a clinical sense though naturally she wasn't over the moon about what was happening to her.

Dementia has very unfortunate connotations, 'demented' is even more suspect. Like 'mental' and 'deranged' - no-one would want these words applied to them. The common usage of these words also seems to suggest a permanent state when, even at an advanced stage, there can be periods of 'normality'.

This is not some PC thing. The words just aren't helpful - to anyone.

Connected to this is the whole concept of diagnosis, of which more later.

How will I find time to write this blog?

I'm wondering that as well!

Must go.