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.