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.........

It's Dementia Awareness Week, and that is one reason I wanted to record my thoughts on here....

How aware were we of Dementia in the past?  Had you ever heard of it when you were a child? I hadn't, or even as a young adult, when did it become known to us.....?

People say 'There is a lot of it about these days'

They really do.

But I think back to school, and Shakespeare - well, not a lot I must admit, but what has come into my mind of recent months is The Seven Ages of Man poem and the end line. 

".......Sans teeth, sans eyes, sans taste, sans everything"

If the old Bard was not describing Dementia, I'm a Dutchman.

I remember  where my Mum lived, and I remember her telling me about the old lady who lived alone down the road, and that she was going 'doolally'  as the poor old dear kept going out and about in the middle of the night in her night clothes. Mum would call during the day to see the old lady was OK, but it never occurred to Mum that the lady was ill with a disease called 'Dementia' - she was 'just going senile' as people did.

Thankfully, there is now a diagnosis - no cure, but a diagnosis. Valuable research is being carried out into the causes, and looking for that elusive cure. But how many of us carers, who have staggered past the wondering, the doubts, and the puzzling, to the final diagnosis - was it a relief to know there was something wrong? We then move to the acceptance, and to the wondering of what might lie ahead.

In the old doolally days, people looked after their own, because it was what one did. If there was no one to do the looking after, there were always the Old Folks Homes, and further back  the Asylums and Workhouses.

Now we know more, we expect more.... but we question, we want to know what lies ahead - and should we?

Once we know what the future holds, in all its darkness, and dread - have we ruined the present?

Too hot to fry

Well, here is my second attempt at a blog, only because I am trying to find my way around the site etc.

I tell people I am computer literate, well I am, but only in  my own sphere of genealogy - which I still work at, by the way.

It's too hot today - I do not do' hot' I hate hot, please don't send me to somewhere where the temperature is over 20 degrees, because  I might dislike you as much as I dislike Dementia.

Capital 'D' for Dementia, because, to coin a phrase, it is the third person in our relationship. If I think of this awful disease as a 'person' I can channel my thoughts towards it - I will never beat it, but I can give it a jolly good thrashing on behalf of the 'poor ould fella' - who has just come back from snooker.

We live a very structured life these days, but those good people on the Alzheimer's Society Talking Point Forum assure me that this is fine, and that people who are walking hand in hand with Dementia are more comfortable with this.

What does Dementia look like ? A bit like Cruella De Ville from 101 Dalmatians - only not as pretty. Dark, spikey, un attached to anything but her own wishes.

See those spikey high heels, Jimmy Choo, probably? I will trip her one day.

I am trying to arrange some sessions for a wee bit of counselling - there has been so much going on recently that I think it would help me get it all in order. The counsellor actually comes to our village - Great! But can I pin down a time that will suit me - and him - or should I say him.

Can't be between 1 and 2 as he 'has' to have lunch then, so can't be Wednesday's either, oh, I can try and get there on Thursdays but 10.00am is a bit early as he might not be sorted for the day.

How did all this happen?

Who knows? I never did like Cruella in the films, but I did not think she would come and live with us in the shape of Dementia.

Have any of you ever looked at a brain scan and seen, and understood what was going on there? I have. Unfortunately, for me I did understand it. It washed over the poor ould fella, even though it was his brain. I saw the holes and the gaps - and despaired. We then walked out of the consulting room and that was that. Go away, get on with your lives, no tablets, no cure, no treatment. OH! How surprised was I.

I am a researcher of lives, I need to know why, and wherefore.  In my perfect world ( pardon?? What might that be) I would want to see a brain scan every 18 months to confirm what my suspicions are...... that Cruella is gaining ground, like a weed, only where is the 'Roundup' to get rid of her????

Well? Am I dementia friendly, or just not politically correct?

Am I Dementia Friendly - not in this house!



Well, the title says it all - I am most definitely NOT dementia friendly. In fact, I hate dementia! It has taken my man away from me, he is a shadow of who he was, it has ruined our lives.

What can I do about it? Can I kick dementia out? Well, no, this unwelcome guest is here to stay, and one of us will win this battle, and it will  not be me, it will not be my man, it will be the hated dementia. And I do hate it. I have never hated anyone or anything in my life before, apart from maths and science, and cookery, and needlework.... but all that is  another story.

Who am I, who is he? That is not really important, enough to say we were once married to other people, and that we came to each other late in life. We thought we were soul mates, we were soul mates, for a while. A slightly odd couple, he brought up far differently than I, in my parents two up two down workers terrace in the north west, and he in a rather pleasant detached house in the east midlands, where one had lunch and supper, not dinner and tea.
We were both creative in our own way - he a very talented  chorister, as singing ran in his family. It does in mine, in fact I had an uncle who sang for Sadler Wells, but it is a gene that by passed me as I cannot hold a note in a bucket. He was somewhat condescending  as to my lack of musicality - he never did realise that I do have a knowledge of classical music, and a love of 60's pop, I just cannot sing.

After we got together, it was great fun. Once a month I would drive up to him in the lovely village of Langham in Rutland, and once a month he would drive down here to Devon. We went on days out, pub lunches, and generally got to know each other. On one occasion he asked me if I minded if we went to visit his sister, Margaret, who was in a Care Home. So, we did. I was not sure what to expect, as Margaret was not very old, mid 60's, at that time. 

When we arrived, I was greeted by the usual friendly staff, and caring people, and awful lingering smell. Every care home seems to have it - it is part of old age, part of decay, and dementia.  I thought to myself that I did not mind visiting, as this was not a great part of our lives together. Margaret was in the latter stages of some kind of dementia. I met her gentle husband, Anthony, and was touched by the loving care he had of his wife. He would tenderly wipe away the excess saliva that gathered in her mouth and throat causing her difficulty. So lovingly, talking to her all the while. I tried not to stare. 

We chatted in front of Margaret, as she was not really with us. But I remembered that hearing stays if all else is lost - in the dying, but I did not know if it still applied with dementia - so I chatted to her too. But I was glad to leave, leave that dreadful lounge with its occupants staring out through the large picture windows, and the child like mobiles and decorations around the room, that to me, seemed intellectually insulting.

I pitied Margaret, I pitied even more, Anthony, her smiling, sad husband.

Little did I know what lay ahead - that our roles would change, Margaret would die, Anthony would grieve, but then he would in due course, find a new love, and be happy again, with his new, fresh, love. Whereas, I, would be the one meeting dementia every day, getting to know dementia, fighting dementia, on behalf of my love, who would grow distant and lost to me. 

From my feeling sorry for Anthony and his awful situation, while I had a new and vibrant love in my life, we have done a complete turnaround. He now pities me, with this awful interloper in my life, while he has the new love.......
But this is only the beginning of my story, and the story of my lost love.........