The Dreaded Disease - David's Story

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The Dreaded Disease - David's Story is a three-part series on BBC Radio Wales that tells us about dementia from the point of view of Welsh broadcaster Beti George.

Her partner of almost 40 years - writer, broadcaster and rugby commentator David Parry-Jones - was diagnosed with Alzheimer's in 2009. Here Beti shares a flavour of their life together.

His name was on the envelope - and of course he opened it. If I get to the post first and see an official looking letter addressed to David Parry-Jones, I open it to avoid the kind of confrontation that happened this morning.

"This letter says that the money belongs to me," he says. And with hackles rising he adds: "So where is it?"

"It's in your account in the bank", I say, "to use as and when you need help."

He doesn't understand "bank account" any more. He'd banked at our local little HSBC bank for decades. When his driving licence was taken away, I carried on with the routine and took him there every Thursday.

The staff knew him well and had followed his decline with great concern and sympathy. But the branch closed. He would have been completely lost in a bigger largely automated branch. So now I get money "from the wall" - which he finds totally ridiculous - he never used an ATM service.

I could say to him, I suppose, that as his carer I should be pocketing the £53, But that would really get him going - "It's mine not yours!" He doesn't understand I'm one of the unpaid carers who save the state £8 billion a year.

Beti George and David Parry-Jones (photo: Warren Orchard)

He'd dressed himself this morning, but then his anxiety about the money led him into a paddy and he decided to take off his shirt. "Please leave it on," I said. But he was angry and I said OK and yes - stormed off to the study. Five minutes later he was calling softly - "Apology. Accepted?"

"Of course," I said - and gave him a hug. "Do you love me a little?" he says. "I must do, or else I wouldn't be here - because you can be difficult." "Yes I know. It's the heat - up here," he says, tapping his head.

(I wish I were a scientist working on research into dementia - trying to follow every twist and turn of those wires in the brain. Living with someone with dementia gives one an intense insight into the behavioural aspects of the disease which cannot be described easily and in detail to a researcher asking pre-formulated questions.)

David's hair was in a mess - and I laughed and told him to go and take a look in the mirror. He came back in a good mood having combed his hair.

It's the Saturday morning after Lady Thatcher's death, and The Guardian has a spoof story on Lady Thatcher written by Posy Simmons - King Ironsides. He's amused by the caricature pictures of the Iron Lady. I tell him to read it so that he could decide whether she was worthy of his adoration. We laugh again.

It strikes me why more hasn't been done about how the brain of this powerful woman had been destroyed by dementia - and that it's a disease that desperately needs to be tackled before it overcomes us, leaving state and society unable to cope financially and emotionally.

The Dreaded Disease - David's Story is on BBC Radio Wales on Sunday at 1.30pm, then on Monday and Tuesday at 6.30pm.

On Wednesday morning Beti will join Jason Mohammad to discuss some of the issues explored during the series with listeners.

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  • Comment number 3. Posted by dweudygwir

    on 10 Jul 2013 14:50

    an excellent programme......i have a father with dementia who has had his scan and assessments
    has to wait till september for his nurse in the whole health authority with files piling up on her desk as peoples lives as they were slip away.....its in humain and must be against peoples human rights to be treated like this.....every day is different, and the diffculties can rub off on your mother is so busy helping my father, she forgets what shes doing sometimes. then i end up supporting her him and my family. phew! There is no point trying to understand what why how whens of dementia....your lives are not over just the lives you
    are used to living are over and from then on in things will be different. there are positive things you can do :

    My father attends activities run by the alzheimers society of pontypridd rhondda cynon taf and merthyr. the dementia choir is a fantastic session, to meet other people, carers, families, and enjoy singing which stimulates the brain...this really works .....its not a cure but it and greet forget me not cafes...again meet others have refreshments sometimes an arranged singer or speaker...sometimes just company with people that know how your feeling that know where to source the help thats out there...we would be lost without the support of the local alzheimers society....
    My personal experience is that dont feel ashamed, or ever have to apologise to people , as the gentleman said in the programme, why should you. I dont mean advertise in the local press, but if those around you are aware in your local community, those that know you and you trust, tell them whats happening and youll find that people do care, and youll have an extra security network that theres keeping an eye out should your relative or should you get lost or need help.
    My father is fairly independant, and thats important , and if you need to leave notes on something then do have to have time appart, me time at some point, and if youre offered help to ensure you can have me time take it......its only natural that you worry if know youre having memory might remember everything about the past but cant remember where you put something earlier on or how to use something.... you have to adapt to the way thats easiest for you to live and if other people dont like it . tough!!!
    If you have children or grandchildren that are being sheltered from the whats happening inorder to protect them, or make a joke of it when you get their name wrong. dont be under the illusion they are too young to understand or notice whats happening they are even if they dont say....
    You probably find it hard to explain something to them that you dont understand remember every school has access to a counsellor and very often they are very trendy friendly young people that are well trained and willing to listen.....there is no stigma....its actually quite a cool thing apparently to ask to see the school councillor....just dont forget that children see and hear everything no matter how much you protect them......... to close dont suffer in silence i would be lost without the knowledge that the alzheimers society is a big help to my dad...give them a ring.....

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  • Comment number 2. Posted by Amma

    on 6 Jul 2013 18:54

    Lordbrecon - you will be ok.

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  • Comment number 1. Posted by lordbrecon

    on 6 Jul 2013 14:13

    I have memory problems and I am having a ct head scan next Thursday. These are scary times for me but I know that whatever the outcome I will need to accept it.

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