It's not all about suffering..........and imaginary conversations needs to be properly investigated

The admiral nurse pointed this out to me and it fits in so well with the person-centred approach to dementia. She was responding to my saying that S's 'conversations' with the people she imagines are now quite often calm and cheerful. So why should we say she is 'suffering' from dementia? Of course when she is agitated and distressed this is upsetting for people who hear her, including me though you would think I'd be used to it by now  -  I regularly hear the word 'nothing' repeated over and over again in a devastated tone before we've even had breakfast  -  it's like being caught up the last act of King Lear. But even this, as the AN suggested, could just be a way of dealing with stress. It's certainly nice when it stops!

So if there were a way of stopping these conversations with medication  -  there isn't*  -  it wouldn't be the right thing to do. And I'll have to find another way of explaining S's condition when an explanation is necessary.

*One of the many things that amazes me about the primitive nature of the research into, and knowledge about, the condition is that very little attention seems to have been paid to trying to understand the 'meaning' of these conversations. It's usually noted, in passing, that auditory hallucinations in Alzheimer's and other dementias is rare  -  and that's it. Yet as I've explained before, they usually sound like 'real' conversations  -  even though nonsense words and phrases are thrown in seemingly at random  -  and can be linguistically quite complex. You would have thought that any researcher with an ounce of curiosity would want to find out more about them. I suspect, if questioned, the professionals would say that it was just the neurons, tangles, plaque etc. But they don't talk, it's a person talking, often about events and issues that they have clearly experienced during their life.

Wouldn't it be helpful if .......

........everyone did what they said they would, when they said they would do it?  This week we have had an extraordinary series of diary changes.  It's not at all unusual to have a couple each week  -  I can cope with that  - but this was something different.

Monday:  We visited a day centre for people with young onset dementia.  The actual visit went smoothly (more of this later) but despite my emailing and trying to phone last Friday, I only got directions and a clear idea of the schedule by phoning first thing Monday morning despite a previous promise that everything I needed to know would be emailed to me in good time.  It was decided that full sessions would probably not suit S but an art therapy session on Fridays would be worth a try.  We agreed that I would take S back on Friday for this so that I could meet the woman who rums it and be on hand to help S or to keep an eye on her if she decided to walk about.  It was suggested that the following week I could use the carer we have been put in touch with to accompany S so that I could have  little respite.

Tuesday:  I asked the carer to do three (paid) hours on Tuesday so that I could take one of our two cats to the vet to be neutered.  We got a pair of Siamese cats (brothers) from a local animal rescue place because we thought they'd be good for S who's always loved animals. (it's still early days but it's clear that S is finding it more difficult to relate to them than we though she would though she is trying).  The cats were supposed to have been neutered but when I took them to the vets where this had supposedly been done  -  for injections  -  the vet who saw them (it's a large practice) said that one of them still had testicles.  This was duly reported to the rescue place.  I expected that they would sort out with the vets what had actually happened but a few days later they phoned and said could I get the cat neutered at their expense.  I explained that this was not so easy for me because of my carer role but agreed to do it, knowing that I would be using up some of my precious three hours a week.  When I got into the vets for the pre-op exam, the young intern from Romania who was dealing with the cat said he could not feel the testicles and thought the cat must have been 'done' after all (what about their record-keeping, you may well be thinking).  A more senior intern was brought in, who might or might not have done the original op, if it had indeed been done.  He didn't remember the cat so also played 'hunt the testicles' and finally declared that the cat must have been neutered.  In this course if this, I learned a lot more about the location of cats' testicles and the development of their scrotums than I'll ever need to know.

I took the cat back home and got on with some of the things I'd planned to do.  In the afternoon, Someone should have come to test S's eyes but there had been a phone call the day before to say that illness meant this would have to be postponed.

Wednesday:  The cleaning service, who are supposed to come after 12, turned up at 10 a.m.  I'd just finished getting S up and dressed but had not started on the tidying that I needed to do following a messy job that our wonderful decorator/handyman had done for us on Monday and Tuesday so I just had to leave the cleaners to do the best they could, knowing that they would have to spend time moving things around instead of  cleaning.  I phoned the agency and they made a note so that it shouldn't happen again  -  a note you might think they'd have made already.  In the afternoon S was due a reflexology session but her friend who does it phoned to say she was unwell.  This was disappointing as there was a break over Christmas and the last two sessions have never really got going as S seems to have forgotten how well she was doing with it previously.

The new home hairdresser phoned to say that she could not do 10.30 tomorrow as she was wanted in work early so would come after work at about 5.30.

Thursday:  We went and had lunch with my brother and sister-in-law.  They invite us once a week and cook us excellent food which S usually eats with gusto.  When we got back home there was an answerphone message from our young onset contact to say that the art therapy wasn't on this Friday, he'd been mistaken and not to come tomorrow.  Later on we were supposed to have a visit from the new hairdresser.  She phoned after the time she was due and said that she had been kept late at work but would be with us soon.  Nearly an hour later she phoned saying her SatNav wasn't working, she'd got lost and wanted directions.  By this time S's daughter had arrived to take her to see friends so we had to reschedule the hair wash a second time.

Friday:  Today we now have a free morning.  I may wash S's hair myself as some very good friends are coming over to visit this afternoon.  They had been coming this morning but we had to rearrange when the art session fell through and as it happened this suited them.

All this chopping and changing probably affects me more than S but it's interesting that over the last couple of months her standard response when I tell her that someone's going to visit is, 'No they're not!'  This week she's usually been right.

I think the thing is that this job is hard enough when everything goes according to plan.  A week like this just makes it that much harder.

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.