In fact it wasn’t a fog at all, more like an electrical storm in the diseased part of my brain….
I typed this in the evening while it was subsiding….my fingers being controlled by a sunnier part of my brain totally separate…Imagine the brain as a map of the world and my fingers live in Australia and the electrical storm was in the UK……and my way of dealing with what was happening…
I was in London for our ethics meeting – playmates in discussion with like minded academics. I spoke of the bad day in that blog…..
But it was more than being discombobulated but took me until the evening to be able to assess what was going on.
The day had started off badly, being rushed, losing my stick, getting lost, but now I realise why. I usually call it ‘The Fog’…but this felt different. When the fog descends I can make little sense of the world around me – the time, the people, the place – but this time I knew where I was, I knew the people, but this electrical storm inside my head was causing different problems….I often use this analogy to describe how dementia affects our ability..:
“We have a complex brain disease, our experiences are individual. Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us. That’s why I can type and other can’t; that’s why they still cook and I can’t; that’s why they still feel hunger and I don’t. That’s why I can speak and they can’t. I can type words far quicker than I can think and speak them because that part of my brain hasn’t been affected others can’t type but can speak better than me. Typing is my escape from dementia.”
Well last Wednesday my lights were certainly flickering on and off at an alarming speed…in our meeting, we’d been asked what we need to consider to set up our own ethics committee …..working in pairs, one person with dementia, one academic. I usually relish this kind of brain work. But this time I found this head blowing just to understand what I had to do…….
I understood the words in the question and understood the words on the flip chart for each section but my brain couldn’t put the two together. I couldn’t connect the 2. I could see the question, I could see the heading on the flip charts where we had to put our answers, but my brain wasn’t capable of connecting them…. It felt like there were flashes in my head as the light bulbs of dementia tried to combine question with answer…..for a while only 1 lightbulb would work at a time….it felt like an electrical storm in my head…
Philly offered me the chance to go sit outside in the peace of the courtyard, but I knew if I did, I wouldn’t come back in. I needed to ride out this storm, try and settle the confusion in my head.
Conversations around the room felt confused and loud. It was so disturbing. I tried to fight the need to scream, to escape to silence, to try and focus…imagine 20 people talking directly to you all at once and trying to make sense of what’s happening, trying to pick out one and them all becoming confused…..that’s what it felt like, even though I only had one person talking to me….or standing in the middle of the motorway trying to dodge the high speed cars……
As the day went on, the light bulbs, one by one, began to stabilise…the electric storm coming to an end, the flickering becoming less, slower and gradually I was able to connect questions with answers…not quite as usual, but I was getting there, able to contribute in some small way. It felt like I was being taken out of normality and into MY reality and the two not combining.
It was as the headaches came and went in the evening and the tell tale bruising appearing randomly on my body, that I did wonder if it had been a TIA (mini stroke)…I’ve had them before, just not like this. The medication dispersing the blood clots forming by creating bruises…..the vascular part of my dementia suddenly rearing it’s ugly head….who knows?
This may ring alarm bells in the heads of our ‘able enablers’. What they should do in these circumstances. I can’t remember if we have things in place already 🤔, but maybe having a quick check list of our wishes in order for them to avoid having to make emotional decisions would help? For example, them knowing my RESPect form is always in the front of my haversack. Not sure how practical this would all be but maybe worthy of discussion. The fact that I would NEVER want to be admitted to hospital….although I think I’ve said this often enough 😂. So difficult for them when placed in that position.
Some may say, Why didn’t I seek medical help?…..simply, because I rarely do. I feel medics know little about my dementia and I understand it best. I didn’t want to put those around me in a difficult situation. No way would I have gone to a hospital, as living alone, who knows when I would have been allowed to escape. I much prefer to deal with it myself, to ride the storm….
After all…the medical world seems to know soooo little about this most complex organ in the body….