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...."

The sixth age shifts
Into the lean and slippered pantaloon,
With spectacles on nose and pouch on side;
His youthful hose, well saved, a world too wide
For his shrunk shank; and his big manly voice,
Turning again toward childish treble, pipes
And whistles in his sound. Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything.

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?

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

Dementia Awareness Week

Well, folks, here we are at the end of  Dementia Awareness Week, and as I type the words, I know we are all aware of dementia - but so many of those affected by it are completely unaware!! Weird eh?

There are those like my poor ould fella, who is still more or less with us all, then there are those much further along this rocky road who are just there, in a body that has forgotten what it is about. Neither of these groups are dementia aware, and that is a blessing.

I feel for those who have this disease, and KNOW  that they have it. They can look on google and find out what is happening - that is the cruel part.

Anyway, 2 year ago I would never have thought to be writing a blog like this, never have thought that dementia would be such a huge part of my life.  

What is it really like?

For him it's not too bad, he is happy enough, he has absolutely no responsibilities for anything any more. He goes to play snooker and bowls, and shopping for the never ending peach and passion fruit yoghurts at Aldi. Sometimes there is a real break through and he comes home with a bunch of flowers for me - something reminds him that he used to do this every week....

He is in a 'bubble' of his own world.

This guy who never wanted a TV - now looks forwards with anticipation to Wallace and Gromit's "Wrong Trousers" yesterday - mind you it is hilarious!

What about me? What about me....

He looked after me, he was the  'man of the house' and I loved being cared for in that way. Now I do everything. It is the remembering that is the worst - and that is nothing whatsoever to do with any old dementia.

I have to remember to order all his multitudinous medicines, remember to order all the supplies needed for his stoma care, remember to order our Tesco delivery, and everything we might need. Ordering everything with different time scales to make sure everything is here as and when needed.

I  am lonely - that is the worse part, I am lonely and I am disappointed. We are both getting older now, and probably don't have masses of years ahead, and after everything that has happened in my life, I did not expect this curved ball.

But neither did he.

My brain is still ticking over, and keeping active with my work, his brain is like a clock winding down.

Right, that is the last of these blogs till next year's Dementia Awareness Week - let's see what that will bring.

There is joy, great joy in life, sometimes we have to look for it. I see it in my children and my  lovely grandchildren, and feel blessed indeed. I see it in the flowers, the colour of life, the green of a tree, the birds, and, of course, the hedgehogs that visit my garden every night.

And that is what keeps us going,  keeps everyone in this treacherous situation going.

Love, colour, joy  and smiles. That's it, smiles

Catch you next year....  

Here We Are, almost at the end of Dementia Awareness Week.... and these blogs

Tomorrow sees the end of Dementia Awareness Week, and the end of these blogs. If I have made any of the readers a little more 'into' the life that becomes that of the PWD ( Person With Dementia) and their carer - then it has been worthwhile - but more of that tomorrow, as I still have today's blog to write...

I have a Carer's card - this alerts anyone to the fact that Malcolm is here at home, should I get knocked down by any of the infrequent buses to our village, or any other catastrophic disaster. 

I accompany Malcolm to all his medical appointments, because he not longer knows what they are about.. does that make me a carer?

I can use the 'Carers' card to get into National Trust places, if I am with Malcolm.

I have a Carer's Assessment in place courtesy of Devon Carers and Social Services.

I have been asked to join the Devon Carers Board, to offer my help in their worthy work ...

My GP has suggested that there will be no quick operation on my arthritic knee, because there is no one at home to help me in recovery and I have Malcolm to look after.

DOES ALL THIS MEAN I AM A CARER? Answers on a postcard, please!!

Why do I ask?

Well, Saturday is Malcolm's day for making the early morning coffee ( in exchange for me making him breakfast in bed!) This morning I mentioned how painful my knee had been during the night, and recounted what the Doctor had said...

His reply??

" I don't know why he said that, because you are not my carer!"

Oh! So I am not, because, it seems he does not need a carer after all. So what has all this been about? Why has our world crashed about us? Why did he need life saving surgery, and as a result, his poor old brain took a bit of a beating? Why does he get Attendance Allowance? Why does he not have a driving license? Why are we having people here every day to help with his stoma care? Why are we so involved with Social Services?

What a pickle!

In his head, he does not need a carer. In his head none of the above make any sense to him. In his head, he can drive. In his head, in his head, in his head. As my Mum would say " He has a head full of 'Johnny Robins' "- never quite sure what that meant at the time - but I think I do now.

For the last two months he has been mithering me about a 'Repair Clinic' at the Village Hall - it is today, I have kept telling him it is today. It is on our reminders that it is today, yesterday he asked me if it was today.

We planned on taking the bird table for some TLC and a couple of smaller things.

The Repair Clinic has just started, and he has asked me to have a game of scrabble....... oh? 

I tell him it is the much waited for Repair Clinic today - but he had completely forgotten because all that was in his mind was scrabble... do I want yet another game of scrabble? Not really, but it is good for his poor old brain, so I understand.

Me? No, I am not a carer, not at all. 😏

A Dark Side

I have pondered through this Dementia Awareness Week, quite a lot. I have thought about the past when people just went 'doolally' or 'senile' and the old asylums that I come across in my work....

People are 'sectioned' nowadays.

What is that?

Until you enter this weird world, you have no interest in these things, they concern other people not you. Mad Criminals are sectioned and locked away, not little old Grannies and Grandads, aren't they?

I have come across a website that I have used a lot in the last few months. It is the Alzheimer's Society Talking Point Forum. It has been, and still is,  a lifeline to me. There are people posting on there who are so much more knowledgeable than I will ever be.

There are also people posting on there, reaching out as for a lifeline, who are dealing with things far worse than many of us, and deeply out of their depth, and what is more so, profoundly unhappy.

I have always thought that running a country is like running a family home, only on a bigger scale - OK, so I don't have a dis functional railway running through the kitchen, but most people have a car or two to keep running.

In our home, as most, we know how to treat a headache or a cut knee or take a temperature. We have an over view of what is going on. If one of our family is ill, we treat them,  but we know when we are out of our depth, and we then go to the doctors.

Running a country should be the same. It is no use patting us on the back and saying 'There, there, you will not miss your State Pension if you can't draw it for another 7 years'

Those in charge of social services should be required to read and discuss some of the posts I see daily on the Alzheimer's Talking Point Forum, and then maybe they will then realise what a soul destroying task caring for someone with dementia is - and I mean soul destroying in the sense that this awful disease has two victims every time. The patient and the carer.

No member of the public should have to acquire the expertise to needed to search around for a suitable care home for their relative, and worry endlessly when said relative becomes violent - yes, this happens with some dementia sufferers. If your PWD is sectioned that brings a whole new lower level to this ballgame.

One can walk down the street and appear to be 'normal' but inside you are breaking, because you truly live in a different world when your loved one is sectioned.

There is a word...... heartbreaking...... think about this word, and what it means.

In the 21st century there are two plagues - just like the Black Death of times gone by. Cancer and Dementia - the evil twins.

It is absolutely paramount that Governments pour funding into research and support for those affected...

I could be cynical and say that perhaps it is viewed by the men in grey suits as a natural population control....

Let's hope for a more cheerful post tomorrow !!!!

People say I am strong

I have always been told I am strong - whether it was aged 11 and taking my siblings home from school, and looking after them till Mum or Dad came home from work, or coping with the disabled children I fostered, or just life itself.

But even the strongest of people just want to stop being strong after a while, be it a week, year, or lifetime.

Am I strong? No. I am not.

I have friends who are much stronger than I, who get on with life and its ups and downs, without grumbling like I do, about the unfairness of it all.

What I do try to remember goes back a long, long way. Dad used to tell me about the poverty he saw in India during the war. The teachers at school used to tell us about the poor starving 'black babies' in Africa, and how lucky we were to be brought up in the smog and filth of the industrial northwest, in a house with no bathroom,with no grass, no trees. With grimy neighbours returning from the coal face, and washing strung across the back street.

We were lucky.

And now when I feel the world is against us, and that I do not have time left in my life to make all the wrong things come right for us again, ( not that they ever will) I remind myself of the black babies in Africa, and the beggar children in India, and think that my life is not bad, not bad at all.

My OH or PWD, as I have seen them called on various forums, is sat watching television, as is his way. He never wanted a TV not for years, we did not have one. Clients at work ( remember - I am a genealogist) would say 'Did you see Who Do You Think You Are? last night' and I would airily reply 'No' and watch their astonished faces, before adding 'We do not have a Television.'  In this modern day - no telly!

But we do have one now, thanks to my lovely son who brought a spare one from Scotland. Thank goodness for Tim Wonacott and  Anita Whats her name, and Charles Hanson and all the others who besiege the airwaves with antiques - he watches them endlessly while I try to work. And don't forget Alexander Pointless Armstrong, and who ever it is that does 'Tipping Point.'

Ask him later, what it was about and he does not know.

But, you know, Dementia, is not just about losing your memory...... your memory is bigger than you think, really, it is.  I forget things, you forget things because we have not room in our minds for everything we have ever done or ever learnt. We cast aside the un necessary.

But what happens when you cast aside the necessary as well?

That is the dark side of Dementia, the ugly side, the side we do not see on TV or in the adverts. 'Let's do a Memory Book' or 'Let's sing an old fashioned song' or paint, do jigsaws, or whatever, whatever, whatever.

But what happens when you forget what order your clothes go on? Or what your spoon is for? or how to wash your face? Let's go darker, go deeper, what about when you forget what the toilet is for? Or when a dark rug on the floor, looks to you  like a big hole that you cannot walk over.......

Was it Arnie who said " Be afraid, be very afraid" ???

But there is a new begonia in the garden - not quite up to dear old Monty Don's standard, but it is very pretty, and I will enjoy watching it grow and will also encourage my hoggies to go and eat the slugs, so that it will not spoil!!!

Watching TV last night....

There is a cracking mini series on BBC1 at the moment on a Tuesday night called 'The Split'... we both watched it, or at least I did, and he looked at the screen, and then got bored.

The inability to follow plots and stories seems to have hit him, although he doesn't appear to have noticed. He no longer reads books, and rarely reads even the Reader's Digest which he used to enjoy.

I comment on the News which he insists on watching, only to realise he has not followed any of it......

Slightly amusing in a funny sort of way last night.. a lady came to the door selling raffle tickets, and he answered the door. It was for our local hospital, Musgrove Park, in Taunton. He turned the lady away before I could stop him, quite firmly telling her he did not want any tickets. After he sat down, I asked him why he didn't want any tickets when he had spent so long as a patient in that hospital, and only last year they actually saved his life!

His reply?

" Did they? Oh! I don't remember"

Too late the raffle ticket lady was long gone elsewhere in the village to sell her tickets to more willing buyers......

I knew today was going to be an awkward day when I couldn't get out of my dressing gown - a problem I do seem to have now and again. No matter which glasses I am wearing they always seem to be the wrong ones for the job I am trying to do.( long story about glasses, so just believe me)
My  dressing gown has ties on the inside to hold it in place before you fasten the belt - know what I mean- somehow when trying to untie them, I got into a terrible mess and the whole thing got knotted together! I was determined to get myself free, so a pair of scissors came into the play and eventually I could get on with my day, our day.. and we are going out to look at the bluebells at Blackbury Camp - I think they might well be over by now, but we rely on DD and 2 year old Jack to take us as we now no longer have a car.

Dementia does not only take your memory, it takes your car after a while because you are not reliable enough to drive, and my sight is no longer good enough, even though I have a license - which is useful as ID if nothing else - maybe one day I will get a passport instead, but then I can't go anywhere...

You see, dementia does not only effect the affected - my OH is blissfully completely unaware that his dementia has any effect on him at all - dementia effects the wives, partners, family and friends, quite often far more - to begin with.........