What My dementia means to me.
If you read one thing today make sure it’s this. First, here’s a little context.
Over the last year a new Good Life With Dementia course was created and delivered BY local people with dementia FOR local people more recently diagnosed with dementia in the East Riding of Yorkshire. It was a great success and we felt we had to share one part of a fantastic post diagnostic resource pack that the group produced together. It is a piece written by course tutor, Bob, East Riding resident and also member of York Minds and Voices – a group in the DEEP network. Put your feet up and enjoy this moving, humble and humorous piece from Bob and listen to the message in there. Over to you, Bob.
WHAT DOES MY DEMENTIA MEAN TO ME? – BOB LONG 2021
Hmm! That’s a big ask!
My first thought (after, of course, considering that, in spite of my ‘inner wishes’, I have to acknowledge a diagnosis of dementia!) was that, progressively, I have become less able to be as ‘comfortable’ in respect of making proactive positive decisions. Hence I am more inclined to ‘withdraw’ in circumstances where once I would have offered a response around personal feelings, advice, opinion, thoughts, reflections, perhaps counselling.
I suggest that may be an ‘outcome’ of a long and very happy Primary School career! My teaching ‘mantra’ was, simply, ‘when you speak I will listen, I respect what you say’. (This is a line from our school song ‘This Is Our School’ which was sung regularly. *My words set to music by a very talented member of staff.
Anyway, I have now had enough experience of personal ‘inappropriate’ behaviour to recognise that I need to be a careful listener before I respond to other people’s thoughts, ideas, passions, decisions etc. before ‘expounding’ my views! I guess that, generally, (Sue may not agree!) this is why I ‘walk behind’, not necessarily in fear of my own integrity (and personal wellbeing) but, (this is a hopeful ‘belief’!) that I don’t embarrass the company around me! I suppose, to some extent, that’s a ‘cop-out’ and, on reflection, enhances the ‘analysis’ and definition of my dementia.
Who is kidding who?!
And the positive? Mmm! Not many in terms of returning to the ‘old’ Bob! However, certainly since I’ve ‘come out’ (!?) I am more easy on myself and the ‘understanding’ displayed by my family and friends has ‘soften’ and grown!
Certainly there are ‘bad, sad’ bits and, in respect of the times I ‘default’, I am always later aware of its effects on and responses from my loved ones (so sorry Suzie; your patience is incredible!) when the ‘clouds’ roll over and I lose my ‘me’! That ‘me’ is now much too often! From the simple ‘where did you put it?’ to the ‘that’s got to be done again!’
Anyway, that’s my ‘today’ reflection. It’s been ‘cathartic’ in terms of ‘emptying my head’ and, having read it to Sue (and her not sending me off to try again!) I am happy to have shared it with you.
I’m still Bob. Just be patient, tell me you love me and, politely, remind me that I’ve forgotten to put my trousers on.
Thank you. Bob.
