I water the plants so as not hear Anna’s screams, as the carer helps her to wash. Why doe she struggle so much? It could be that she is now so sensitive to touch that the slightest pressure is frightening. ( I think of the little boy we heard about in the burns unit.) Or it could be the indignity of needing help that gets to her, and her wish to cover up her dependency by avoid the things that she finds difficult. A bit of both, probably. She is calling out for me.

We are having to think about the carers. They have to take some holiday. One is retiring in September. And I plan to be away working for a week. So we need to introduce some more help. Very carefully. There is a meeting this afternoon, with social services.

Am I worried that they will take away the carers we have, if Anna becomes too difficult? Challenging – that is the weasel word. Of course I can’t believe that they would do that –but they might – ‘they’ might decide that it is too difficult for them to support her at home and try to force the situation, that she be put away into institutional care before we are ready. Or they could assess her as needing continuing NHS care, so we could then have more resources? This is life, so it all comes down to money.

I have her anxiety, that help may come at a terrible cost to her independence.

Hold on – they might be really helpful – we just don’t know.

Meanwhile the carers always carefully note any bruises that Anna suffers – and the bruises on themselves?

I go to meet Anna on the stairs. She is looking good, though she hesitates as usual at the bottom step. We have learned when to encourage her, when to be quiet, when to take hold of the situation, when to back off. Nothing is straightforward here.

After breakfast I install new toner in the printer, to download yet more catalogues about adaptations. I open the post. We have been selected to participate in a Holiday of a Lifetime for ‘couples and families who enjoy the finer things of life and appreciate first class holiday in luxury resorts around the world.’ I answer the phone:it is the Marie Cure Cancer Fund soliciting contributions. We seem to be on everybody’s list.

Time to take a break …

Want to hear about the social services meeting?

Unfortunately a couple of people weren’t there, including the home care manager, so I couldn’t ask about introducing more carers before I go away. I used to get bear-headed about this, not knowing until a day or two beforehand what was happening, but I have learned over the years that with dementia IT IS NOT POSSIBLE TO PLAN. In part this is a function of the uncertainties of the progression of the illness, which we can’t do anything about. In part it is a function of the way services are organised.

Anyway, social services are going to assess Anna again to see if she is eligible for more resources. There is a format for this, and it applies to all sorts of disability and disease. How is someone with dementia likely to do?

It is a rigorous examination., as you might expect. The tests to show you have dementia are straightforward enough -–can you recognise the elephant in the living room? - but to pass the criteria of the health services for receiving any help to cope with that dementia is very much more difficult. You have to score maximum points in at least one category – a distinction in your special subject, as it were - or perhaps you will scrape a pass if your score highly in four categories.

So it would help if you are physically very disabled, or if you can’t speak or communicate at all, or if you are completely off your head and a danger to man and beast. But the person with dementia is likely to be more a generalist, experiencing very considerable problems with mobility, communication, challenging behaviour, depression, cognitive impairment.

The rules are very strict. Please take care not to weight the same needs in more than one domain.

The tension is mounting. Will Anna get to score maximum points in any one of their domains? This seems to be a system weighted for the specialist user of services not the generalist. Perhaps they should introduce the pentathlon into their assessment. She would be a star.

Coming away from the meeting, I think that the irony is, without the specialist care and psychological understanding of her very complex needs that she is already getting, Anna would not now be able to get down that bottom step of the stairs, or recognise her friends, or trust the carers even when she is giving them a very hard time, or live at home at all. She would even now be a caricature of a demented person in a continuing care ward – assuming it has not yet been closed.

Back home, we keep cool in the heatwave.

‘Can I have a drink, please?’

Do you think that her still being able to say please means that they will fail her as a total wash-out of a human being – which seems to be the test that they are applying?