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.