Thursday, February 7, 2019

What do Shakespeare and Spike Milligan have in common?


A slightly flattering image of the Bard, methinks!

a quote from "All the World's a Stage...."



Since dementia came to live with us, I have thought often of these lines, learnt but not understood, whilst at school. But the old chap was quite right, especially when you consider the last two lines - he could well be describing this blight that is upon the 21st century, when so many other ailments can be cured in the developed world.

The anomalies that dementia brings are enough to confound the cleverest of us.  This thing called 'Hosting' - it sounds so friendly and social. But what it really means is the the PWD ( Person With Dementia) can, for some short time, appear to be normal and without problem. It is really confounding for the carer.

Someone calls by the house for a cuppa, or even supper, and the PWD acts perfectly normally. The visitor goes away, thinking that the household is functioning perfectly well and there is not much to be fussed about with this 'dementia' - it's just a few lost memories.....

Meanwhile...the PWD has gone into complete meltdown, unable to sustain the 'hosting' mode, is exhausted, unintelligible, incomprehensible. The carer, if there is one, is frustrated and upset, and wonders why the PWD can't 'behave' themselves all the time.....

Or 'hosting' mode when seeing the consultant, doctor, social worker - equal annoyance to the carer, who sometimes thinks it is them that has it all wrong, and could even be imagining that there is something amiss with their loved one.

Anasgosnia - I think  that is correct, sounds more like a Russian socialite from the days of the Czar - but in reality is this really awful side of dementia. It means that the PWD actually, genuinely, really, thinks there is absolutely nothing wrong with them. This means, in their head, they have no need to go to the Day Centre where all the old people sing and dance and so on, because they 'are not like that.' It means they will not go for respite care because they ' are not like those old people.' It means that PWD simply cannot understand why he has lost his driving license - that he has had for 55 years, because ' I haven't got dementia at all.'

It  means more ducking and diving for the unfortunate carer who has to smooth over all these brick bats, trying not to upset PWD, but no matter how many hours are spent trying to explain, the carer knows, that by the time PWD has walked into the next room he has forgotten all about it.....

All the world is a stage, and we all have our parts to play, but this is one tragedy I would rather not take part in.

Spike Milligan - what about him...? The words of a song....



"I'm walking backwards for Christmas,

Across the Irish Sea,

I'm walking backwards for Christmas,

It's the only thing for me...."


and one wonders, is every person with dementia walking backwards towards something long gone?

Monday, February 4, 2019

Adventures of an Unpaid Carer






Are We?

Gosh! Who knows? 

I started a blog during dementia awareness week,  and was encouraged to keep it going, but at the time, I did not have the energy. Somehow, with the New Year, bit by bit, my energy is coming back........ so here I am again!

I hope the reader does not mind this large type, but it is easier for me ( I am very old, you see, now I have had a big birthday) and I guess, easier for someone reading it - presuming that someone does read it!

Bang! Bang! Bang! 



Did you hear that?

It was me, banging my head against the proverbial brick wall.  And I guess I am not the only one. Over the last months, I have been trying to get through this brick wall, using TV and the media. I was on BBC Breakfast Time back in September and on the BBC website  with reference to Carer's issues. I have also given interviews to various magazines etc. the last one was only on Friday.

I am not telling you this because I think I am doing anything special - I am not, no more than any other carer, who is sticking their head over the top of the wall.

My particular bete noire is the anomaly that has existing through various Governments for donkeys years. 

And what is that?
I know, it might seem jolly well boring, but - just think about it for a bit...

Attendance Allowance - my OH get's this allowance because he is sufficiently disabled to need it ( sadly). It is a Tax Free allowance that is not means tested. He is still able to claim the Attendance Allowance even though he gets a State Pension.

Carers Allowance - if one cares for someone for over 35 hours a week, they can apply for Carer's Allowance, as long as any earned income does not exceed Govt specifications. Fair enough.Just like the Attendance Allowance, Carers Allowance is Tax Free and not means tested. BUT, and it is a big 'but' if the carer is claiming their State Pension, they cannot claim Carer's Allowance.

Did you read that?

Do not think you are mistaken - that is what I typed.

Older carers, like myself, are saving successive Governments MILLIONS of POUNDS each year because they cannot claim this allowance.

and that is my personal  bete noire



and for today that is enough - but, I ask you, dear reader, whoever and wherever you are, if you think that this is discrimination against older carers, or if you are an older carer, why not write to your local County Councillor? You might get more from them than the local MP.... 

If enough of us carers stood up to be counted, and I know that is hugely difficult, given how exhausted and unhappy we are, perhaps,  someone will listen.

and that takes me back to the beginning......


and have a cup of tea