This is Dementia Awareness Season – the dates are slightly different in Scotland than the rest of the UK, but wherever you are there will be plenty of awareness raising going on.
But as my favourite niece might say: ‘Seriously?! Who isn’t aware of dementia!’ And she would be right. There is something in the papers, on the radio, in the news, on Twitter every single day about dementia, so you’d have to work pretty hard not to have any awareness of it. Certainly everyone I know, knows somebody who is affected by it. A friend; a friend of a friend or a relative.
I wonder, though, if it’s awareness we need, or if it’s enlightenment.
One of my pals texted me recently, urging me to listen to a phone-in about ‘coping with dementia’. I re-tuned the radio enthusiastically, expecting helpful advice, or the benefit of other experiences and certainly to be reminded that I’m not the only person going through this. What I actually heard was a master class in misery. A catalogue of wretchedness. A bombardment of bleakness. To be fair, I didn’t phone in and offer to tell our rather more cheery story, by way of balancing the books. But I rather think that if I had offered, I would have been turned down.
It seemed that no-one who rang in could get any help, that everyone was beleaguered and exhausted. That no support existed in wherever it was the callers were living. Everyone was either a victim or a martyr.
I think, but I can’t be absolutely sure, they were all phoning from England.
Up here in Glasgow our week routinely includes three visits from Alzheimer’s Scotland, totalling 11 hours of support. During this time I can go out, or stay in and be uninterrupted, or I can chat. Last week we also had a home visit by the podiatrist; another session with Dad’s domiciliary dental hygienist, and a haircut at home courtesy of one of Dad’s support workers who used to be a hairdresser.
All of this is in addition to the four visits we get each day from Cordia – the company which provides help at home, on behalf of the local authority.
Until we reviewed Dad’s medication and cut it down to just one tablet a day his dosset box was delivered to our door every Friday. Dad’s Aricept – along with any other medication he might need - is free.
Along the way we’ve had grab rails installed by the free Handyman Service, been given zimmer frames, various walking and standing aids and we now have a wheelchair, a hoist, and a commode. Not to mention the special air mattress and an air cushion for Dad’s chair. All at no cost to us.
There are probably other things in the house that we take for granted, but which came to us when Dad needed them, with little or no trouble.
There are Dementia Champion nurses in hospitals here in Glasgow and, because of Dad’s Alzheimer’s, he is exempt from paying Council Tax.
I am inundated with information about dementia cafes, musical events, talks and conferences. There’s a local allotment scheme for dementia patients that I would take Dad to if he was more mobile (and interested in gardening, which he’s not).
At the same time there are Carer support groups for me; outings if I want them, health walks, race nights and there’s even a newly appointed nurse for carers whose job is to monitor how we are both physically and mentally. I’m not sure what more help or support we could possibly have. Sometimes it almost feels too much.
I don’t know if this is because we live in Scotland. Or if it’s because I ask for help when we need it and don’t take no for an answer; or because we got in ahead of the crowd. Perhaps if we applied now we would be put on a waiting list and never quite get to the top of it.
It’s not that I don’t believe those people ringing in to that radio show; I certainly do and some of them sounded really desperate, but I wonder how there can be such a dramatic contrast between their experiences and ours?
I do also think that the producers of the phone-in must have been actively soliciting the most wretched calls. But it’s not the whole story and it’s not always helpful.
Of course dementia can be awful, but we don’t make it any easier for people by only concentrating on how hard it is. The fear factor can prevent people getting an early diagnosis, which often means they are delaying vital treatment. It can also add to the sense of helplessness and isolation, which can then become a self-fulfilling prophesy.
So rather than constantly banging on about how terrible it is, I would like to sometimes hear a more positive spin on dementia.
And instead of just being aware of it, here’s some real knowledge:
1 Dementia is not a natural part of ageing – it is an illness caused by diseases of the brain.
2 Once diagnosed there are treatments that can help.
3 It’s possible to live well with dementia – to be able to drive, use a computer, socialise – quite happily.
4 There is help out there.
Despite this, I have friends who are so paralysed by the thought that their parents might have dementia, or even that they may have it themselves, that they won’t do anything about it.
Blimey! What would Angelina Jolie say? If she knew that people were deliberately avoiding finding out about any illness and not accepting treatment or help?
One good thing about dementia – it’s unlikely ever to involve having a double mastectomy.
If that isn’t a positive spin I don’t know what is.
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