This continuing account of living with dementia is now suspended for a while. I am now going to revert to a private diary, to keep a more detailed record. There have been 116 entries over six months. I hope it has been a useful record – what researchers might call created reality. If you want, you can access them by clicking on the archive (rightside of page). You can still make comments if you wish.
A blog is a curious literary device, written in chronological order but there to be read backwards. It reminds me of Harold Pinter’s play, Betrayal. I sometimes read books like that – the last chapter, and then if I am interested, earlier chapters to see what led up to it.

Anna, with the help of Rebekah a psychologist, wrote about the onset of her dementia:

‘Can I tell you about the day my brain left me? My unfaithful brain left me slowly, but there also a few exact moments that marked the start of when my brain began to leave. I know I didn’t lose my brain, but my brain lost me. It lost me at a very important meeting for securing funding for research, when all of a sudden there were no words. I couldn’t even say ‘I can’t say anything’; is there anything worse than that? Maybe it left itself behind with my briefcase, full with a career built on thinking, and forgotten on an underground train. Could I have known then I was right on the cusp of moving from being somebody working well in the world to being someone who would soon not work at all? Maybe it was left with the newly begun doctoral research, now archived into boxes. It left me whilst playing scrabble with my family, and it left me when I needed it to guide my coordination as I walked though the world as an independent, energetic woman with a successful career and busy life.

These moments came up on me like the fox, very, very quietly. It was these series of moments, taken together, that started to build into a sense of knowing that something was wrong. One of the first times I knew that these moments were more than a series of unrelated mishaps was on holiday. I went to paint the wonderful hibiscus flowers I look forward to seeing each year in the little part of Greece we travel to. I went to paint these flowers, but I couldn’t do anything. I didn’t realise till then how much that things were happening with my brain, that it wasn’t working. This year we went on holiday and I saw these lovely flowers again. This time I didn’t try to draw them; somebody else must do it now.

It was frightening to know things were changing, to know these series of moments were accumulating into an overall sense of something really being wrong. A friend who is a doctor eventually began to notice the changes that were happening. He intervened, and encouraged me to have these changes investigated. It was one thing to know in private that my brain had become unfaithful, but it was frightening to learn that my brain’s private betrayal had become publicly observable.’