The creator of Moving your Soul asked me to reply to a question from one of their blog followers; ‘I would like to know about your symptoms at the beginning of your process before the diagnosis of dementia’. It started me thinking… and revisiting this time in my life, and the impact of not being able to find the right word.
Part of my response to Susana was to add a quote from an article I wrote soon after diagnosis;
‘My high functioning mind has slipped away, sometimes showing itself like a ghost, trying to tease me into believing it will be okay, but now outside of my reach. My thoughts fly around inside my head like helium balloons high inside an auditorium, also out of my reach.’
What happens when people with dementia can’t find the right words or when our thought processes become confused and muddled? To begin with we worry, and struggle with feelings of humiliation and a loss of dignity. We feel embarrassed and ashamed. We feel frustrated and annoyed. I still regularly wonder, ‘What the hell happened to my brain?‘
The challenge for us, whilst we still have insight, is the time it takes, or the growing frustration of not being able to find the right word. For me, I am also speaking ‘back to front’ a lot if I don’t take time, e.g. I will say ‘ go left’, when I mean ‘go right’. It is also the speed of which a thought disappears, before you have grasped it which makes it difficult to communicate, and hard to live with.
Playing charades helps, but only if your family and friends know you really well!
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Speaking “back to front” must be very challenging. I can only imagine the difficulty this poses.
Really love your blog’s title, by the way. Creating life with words: how apt!!
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Yes, it is, thinking back to front is weird too! and thanks for joining the conversation here as well, appreciated. Glad you like the blog title too, it has, as it turns out, been a very apt title indeed!
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Dear Kate
Have been following your blog for some time now and love the many insights you offer as you put it, as ‘a person living well with dementia’. Have used some of your thoughts and insights in my role teaching residential aged care staff about person-centred care for residents with dementia – 20 Things Not to Say or Do to a Person With Dementia always has a profound impact! Loved your metaphor of the helium balloons soaring out of reach in an auditorium as I think it really cuts through as a way of explaining to those of us not living with dementia what the frustrations of word finding difficulties must feel like.
cheers
Rose
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Thanks Rose… glad it helps. x
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Dear Kate,
your thoughts, insights and words mean so much to us – the Moving your Soul team- that we can´t help but to feel proud and so lucky to have you around.
And….you always give me a giggle or make me laugh!!!! You are so gifted!
Love
Susana García
http://www.movingyoursoul.com
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Dear Susana and the ‘movingyoursoul’ team, thank you for your friendship and support. Glad to also give you a giggle occasionally! With love and hope, Kate
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Kate – I call it “word retrieval” problems …. I can describe something but I can’t find the right word to match the description I’m dolilng out. I have word retrieval problems
I’ve got a quote I use sometimes to describe what happened to my brain ……
“if i had another brain it would be lonely”…….. 😉 😉
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Hilarious… mine knows what you mean!!
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….Dear Kate….and that is exactly how one feels, thanks for sharing it…..and yes, laughter does help……this disease does’nt like laughter and determination, it gets very frustrated when one behaves against it…..I admire your style …
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And I admire yours Tony… swimming against the tide is bloody hard work, and ‘it’ is not the only one who rails against it! 😉
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You wrote a wonderful and insightful response to that question. I hope others read it so they know how people with beginning symptoms can feel!
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Thank you… it is easy to simply make light of it whenever it happens, but the feelings inside are a whole different ball game!
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It’s always sad to watch someone struggle with a condition like dementia but your posts are so insightful as to what they truly go through. You are a shining light and I feel honored to read your pieces!
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My mamma, (97) has taken to banging on her bedroom door with her walking stick to get attention. When one of us rushes to see what she wants she giggles and says she can’t remember. I’m just glad she giggles.
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You have given me a giggle too! Thank you 😉
A couple of nights ago, my DH and I were doing the dishes together… and some ‘odd behaviour’ appeared out of nowhere. We laughed and laughed, even though my poor husband had no idea why I was behaving that way. The day after, I tried to explain it, but really there is no explanation, ‘it just is’, as we often say. We are glad we can still laugh about it too.
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