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Talking about dementia - blogging and how it helps

Talking about dementia - blogging and how it helps
This week's storyteller is Jill Sinclair.

In honour of Dementia Awareness Week Jill talks about caring for her dad who has dementia and how her blog helps her work through the new challenges she faces. She hopes that by publicly sharing her experiences she will encourage others dealing with dementia to learn more about it and increase awareness.

What is it they say about information being power? That knowledge is strength? I’m sure it’s true but the road to enlightenment – especially where old age is concerned - can be a bumpy one.

I’ve been involved with the care of both my parents and thought I knew pretty much all the important or useful stuff; but that turns out not to be true.

If I could have another shot at Mum’s end-of-life care, with more information, would I do any of it differently? Yes, almost certainly.

Has the experience of her decline prepared me for Dad’s? Not nearly enough and not in the right way.

Last autumn I decided to move back to my childhood home in Scotland to help look after my demented Dad. Among many other things I needed was a way of keeping in touch with my friends in the south. I’m not a great Twitterer (there aren’t enough characters!) and my Facebook page has long since atrophied through lack of use.

I also realised quite quickly that I wanted an outlet for my fury at the things which make life unnecessarily harder – the cack-handedness of a hospital consultant, the thoughtlessness of a neighbour, the stupidity of the BBC – all of which got dealt a generous helping of my irritation and frustration courtesy of my blog for the Glasgow Herald. But perhaps more than the missives and the ranting – as helpful as they most certainly are – it is the ability to find things out and then have the chance to pass on information to others that makes blogging worthwhile.

Sometimes information falls seamlessly into our laps, much can now be found with the flimsiest of research, but to unearth other vital nuggets it can feel as if you need a degree in fracking.

Charities and support groups tend to be rather single-minded. They are likely to have limited resources, small budgets and not enough staff, so they can only concentrate on the bits of the jigsaw that concern them. Which is why you can find out everything you need to know about X from the X support group, but ask them about Y and it’s unlikely they can help.

Having a blog is a bit like being a Minister without Portfolio. I can write about whatever I like – as long as it has some vague relevance to dementia, ageing or carers – which nowadays directly affects many millions of people. In the name of blogging I have been able to promote the idea of Dementia Champions in hospitals – they are there - as part of a Scottish Executive and only in Scotland for the time being -, but all the money is spent on employing and training them so there’s nothing left over to promote them, and it seems not even the hospital staff know they’re there! If anyone has benefited from a Dementia Champion as a result of reading about them in my blog, then I’m delighted.I’ve enjoyed finding out about diet, what to do with an unwanted Hostess Trolley, the power of music and how so many of us are routinely over-medicated.

I particularly liked the visit from two Fire Prevention Officers, arranged to feed my blog. The installation – free of charge – of the very latest, potentially life-saving heat detectors is something every home should have, and especially where there’s an elderly person involved.

We now have ‘Do Not Resuscitate’ paperwork in the house, thanks to Dad’s GP. The DNR protocol is shrouded in myth and misunderstanding and, by not having it, we could quite unwittingly condemn Dad to a wretched end.

Without my blog to provide the impetus, I’m not sure I would have followed up on any or all of these things.

I’ve got plenty still to do – there’s the quest to learn about Dementia Dogs and Pet therapy – which isn’t strictly speaking relevant to Dad but which may be useful to someone else and I’ll doubtless enjoy doing the research. I am also working on a check-list in preparation for getting old – not a ‘bucket list’; mine is rather more graphic and involves circumcision for the men!

None of this sleuthing would have been so easy to explain if I had just been keeping a journal - or ‘diary’ as we used to call them when I was a teenager. And, unlike the chronicles of my youth, these musings are intended to be read – not just by my friends but by as many people as might find them helpful.

And it is meant to be a dialogue, not only a one-way conversation.

Postings in the ‘comments’ box on the blog’s website are always welcome - it's important to feel that people are reading; that the information is useful. But the comments I like best also make me laugh out loud.

Debbie, who had read my blog about the science of sleep and how we can all be affected by Chronic Sleep Deprivation, wrote:

"My 84 year old mum has sleep difficulties and told me the other day that melamine should do the trick! Am expecting to go round soon & find out she's using her wakeful hours to install new kitchen surfaces."

Knowledge is strength and laughter is the best medicine. And websites and blogs can be a great place to get a healthy dose of both.

Read Jill Sinclair’s blog My Demented Dad for insights into her life as a carer and information on what's helped on her journey with her dad.

Dementia Awareness Week in England and Wales is the 19th-25th May.
Dementia Awareness Week in Scotland is the 3rd-9th June.

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