I’m sitting in the garden at my son’s house. It’s early morning, and traffic is thundering distantly along roads and lanes, coming and going, people going to work, lorries, tractors, manure.
I am staying here for ten days to look after three dogs, including Lupin of course, and the house.
A bit like going to a hotel for a holiday, except I’m on my own. I’ll be carrying on with my usual things. A meeting today. London tomorrow. Local health economy dementia steering group on Thursday.
And entwined around these visits are three dogs and an unfamiliar home.
For days I have been wondering how I would organise myself. Make sure I had everything here. Get to meetings on time. Exercise the dogs. Go home to check things. Take pills regularly. Not break my diet.
That’s already done…on day one. A kitchen and fridge full of stuff we have got rid of at home. What did I expect?
But the thing I am writing about is the constant grounding I need.
If you have impaired ability to ground yourself, without having to think about it, you have to work at it.
All the orientation signs and marks are missing.
The routine is broken.
The daily milestones and signposts have been removed, and you cannot be sure you are heading in the right direction.
People who don’t rely on routine, and remember where they put things down, and what has to be done before leaving for a meeting…these are the lucky ones who can dislocate and relocate without a thought.
So I have put more reminders than usual in my ipad. I’ve brought my own coffee maker (the wonderful Aeropress) and tea. And I just keep thinking through my day’s events, how I will get there, time to leave, where next…
No more than anyone else would do…but definitely harder work than for many.
It’s tiring never being able to switch off.
That’s why we who live with dementia find formal meetings tiring and difficult at times. You really have to concentrate to keep track.
Yesterday I was at a local mental health partnership board. There because dementia is under mental health!
Yes, I agree, it shouldn’t be. But it is.
So it was my first time there, and I wanted to just get the lie of the land before opening my mouth.
Introductions around the table…classic…people are ‘cold’ still so they try not to be noticed. Speak quietly and quickly. You cannot possibly work out what they said before the next one starts, let alone lock it in the memory.
Then, the diarrhoea stream of acronyms was just, well, like swimming through shit.
Perfect example of professionals failing to understand the needs of the many ordinary lay people around the table. Many of them with mental ill health and trying to be part of a ‘partnership’.
As a new boy I chose discretion yesterday. Next time…there will be blood…and yellow cards.
“I want to speak”
We were taken through the early years of the five year mental health plan. The key priorities for action, and therefore for new funding.
(Think you know where this is going.)
Younger people, schools, college…of course.
Dementia…NOOOO. Of course NOT.
Hardly got a mention.
So that was my trigger.
Excuse me, but I feel very uncomfortable here. Dementia has not been mentioned in these documents but it is (wrongly) lumped in with mental health. Is it seen as not important? I came because I wanted to influence for improvement in dementia care and support services. Was I wrong to attend?
Nodding heads, when I mentioned dementia. Nodding heads that dementia is caused by physical disease not mental ill health.
And I was assured that I should indeed be there, to hold commissioners to account for spending funds targeted at dementia on dementia. Please continue to attend.
So I will…but next time I shall be putting up my hand to stop the acronyms and slow people down, and meet our needs. Because there is no point in working together if we don’t work together.
And if we don’t work together we will get nowhere.