Kevin Whateley - What an ambassador!!!

Welsh Colleen

Registered User
Mar 23, 2009
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Wales
My first post

This is my first post. I too had to steel myself but found it easer to watch than I thought it would be.
It was informative and helpful, without causing too much heartache, although there was some.
My Mum has been in and out of CHs since last June, when my Father found he could no longer cope with caring for her at home. He had carers going in daily, along with family support but as he was terminally ill (sadly we lost him Sept), it was just too much for him.
Mum has lots of nursing needs as well as having vascular dememtia. I thought we had finally found a good NH in October near to where I live.
I am at present having some concerns with her care as they are doing a great job on her nursing side but her dementia needs are being neglected.
Two things that reached me from the programme was the music, Mum loves a CD player I took in at Christmas, and sadly the other was how I am feeling, that I am grieving now for Mum but she is still there.
Thanks to the programe makers and to Kevin and John for sahring their pain with us.
 

Tender Face

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Mar 14, 2006
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NW England
It would be interesting to know how many friends and relatives, children and grandchildren of those with dementia will have watched last night.

Interesting point, Sylvia. I purposely protected/diverted my teenage son from watching the programme (trying to support him through his own grief issues at the minute) ... and Barb's point is so valid .... but how do we get the message across without actually frightening younger people?

We can tell them not to smoke in case they get cancer, we can tell them not to drink in case they get liver disease etc etc - but until we can offer some message of hope for them regarding dementia - how on earth can anyone reach a 'young' audience without simply scaremongering and offering them the potential 'doom and gloom' that might await them in spite of all the healthy living we might try to promote in them? Lots of diseases are about minimising risk from an early age ..... but with Alz and other variants we don't know what it is we are supposed to minimise or maximise - or even if we do - would it make any earthly difference?

I struggle to think of an appropriate way to 'inform' children or young people and young adults without giving some 'silver lining' of hope? If we can get to even a silver lining - that might be progress?

Karen, x
 

JPG1

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Jul 16, 2008
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Random Is My Word For Dementia

All I can offer to your debate, Karen, is the word "random" which is a word that most younger people understand.

In the same way that many 'unexplained' diseases are not targetted - they merely find their way by random selection.

Not meant to sound like selection of the fittest, or even selection of the "unfittest", but merely selection at random. Like the pinball machine of old; like the bagatelle of old; like Bingo, and perhaps like the .... ... ... you tell me!!

That's the most comforting word that I could begin to come up with at the moment.

Random Dementia.

Dementia finds its path at random, and by random selection. Unless and until some 'expert' comes up with a better word to describe it.
 

sumosumo

Registered User
Aug 20, 2008
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Isle of Man
Sumosumo: to do a quote like this one, press the quote button at the bottom of the post you want to quote which will also bring up a reply box, and then delete anything you don't want (make sure though you keep the square brackets and the "quote" words with in them. You can also just copy as you did above, open a normal reply box, choose the icon above the reply box that looks like a square cartoon quote bubble (4th from the right) and then paste. The latter way, though, you don't get an indication of which poster you are quoting.

My first quote work:) Thanks JennifaPa for the lesson.
 

Tender Face

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Mar 14, 2006
5,379
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NW England
All I can offer to your debate, Karen, is the word "random" which is a word that most younger people understand.

Random is the antithesis of help and understanding for young people. Children and young people need uniqueness and individuality and a sense of self and having some control about their own lives and destiny - which is what scares me about getting a message across to an audience too young who could be harmed more than motivated at their level of understanding that dementia may one day claim them.

I didn't mean to 'spark' a debate - just acknowledging some very valid observations about a programme.

What I believe Kevin has done (as others like him) is to take social responsibility ... and I believe that is what THIS generation has to do ..... highlight what we know and move that forward (in whatever way we can) to protect the next generations without putting the onus on them to take responsibility for things they should not have to worry about, let alone understand .......

Karen
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
This is my first post. I too had to steel myself but found it easer to watch than I thought it would be.
It was informative and helpful, without causing too much heartache, although there was some.
My Mum has been in and out of CHs since last June, when my Father found he could no longer cope with caring for her at home. He had carers going in daily, along with family support but as he was terminally ill (sadly we lost him Sept), it was just too much for him.
Mum has lots of nursing needs as well as having vascular dememtia. I thought we had finally found a good NH in October near to where I live.
I am at present having some concerns with her care as they are doing a great job on her nursing side but her dementia needs are being neglected.
Two things that reached me from the programme was the music, Mum loves a CD player I took in at Christmas, and sadly the other was how I am feeling, that I am grieving now for Mum but she is still there.
Thanks to the programe makers and to Kevin and John for sahring their pain with us.

Hi Welsh Colleen

Welcome to Talking Point, glad you found talking point thank - you for sharing. Sorry to read about your mother passing away in September
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
An excellent and well-balanced programme showing, in the main, how life 'in care' should be (just watched on the ITV-Play site - thanks for the link).

The bit about SPECAL in action was interesting; as someone else said, it's what you learn to do the hard way, but need to learn about sooner.
I recall some discussion of the theory on this forum last year, when it met with mixed opinions (I believe in response to the publication of a book? I may be wrong there).
The music/singing therapy was both practical and uplifting to the spirits of the singers.

Gill/Amber5 - please don't worry too much about what will be said to your mum next Friday. I think for the purposes of the programme they will have picked a case where the couple concerned had already said they wanted to be told the diagnosis outright, as was done. If you are concerned, there is still time for you to phone the CPN before the appointment & express what you think would be the best approach. Some people can only cope with hearing "memory problem", some want to know the detailed diagnosis.

Maggie:

I'm afraid I very much doubt it - it's not a vote catching subject. As someone else said, programmes on dementia largely end up preaching to those already converted to the cause by their own experiences. If there was any way of confirming how many MPs who watched, I'd bet good money that number wouldn't exceed the number of my fingers!

I admit it, I am becoming a cynical & embittered old woman on this subject (whatever colour rosette they wear).

.

Lynn was it not the green paper that pass made it to the white paper for the National Dementia Strategies to happen?
 

JPG1

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Jul 16, 2008
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Reply to Karen,

We are debating. With or without a spark. Spontaneous combustion!

I use the word “random” as the only word I personally have ever found to define how ‘dementia’ finds its ‘targets’, its ‘sufferers’, its ‘victims’.

You asked, Karen, how to get the message across without frightening young people, so that they can understand that no matter whether they eat their greens, or make their own efforts to ‘live healthily’ and so on ... as did my own dementia –targets ... then there is no reasoning behind who will and who will not develop dementia.

All I can find to suggest is the comfort from knowing that there are no defined reasons yet. No defined reasons that we know about, or the experts have told us about yet.

Which is why I use the word random, to describe the way that dementia finds its target.

The best way to ‘help ‘young people can only be to tell the gentle truth. As we know it now.

There is no way that you can give a young person control over whether or not they acquire dementia at some point in their future. Any more they can gain control over whether they acquire .... any unqualified condition.

If there is, then share the secret.

Their tomorrow is also our tomorrow, even though we may be just a tad older than them! So if there is a way of giving them control over their own medical-condition controlled lives and destiny, then us older ones must have missed the trick long ago.

All we can be asked to do is to impart to the younger generation the benefit (as we see it now) of our acquired knowledge. And at the moment, there is no way of knowing or predicting who will/may be affected by any dementia at any point between now and .... then.

Thanks for the spark, Karen!
 
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Lucille

Registered User
Sep 10, 2005
542
0
Hello Karen et al

Thanks for starting this thread. I watched this programme with my mum ... well tried to. She talked over most of it, saying, "I feel sorry for people that are senile." !!!:confused: I've given up trying to explain to her about her "type" of dementia.

I agree with what others have said about the politico not answering the question, how annoying ... but they are well trained, huh? Kevin must have great patience not pursuing the issue or did they edit out the MP being lamped?! :D:D

I thought the programme was excellent. Like Bruce I'd like to see something about VaD as this is what my mum suffers from and on the face of it can appear "normal" and able. But I feel that any publicity for dementia is positive, if it serves to educate in terms of what is waiting around the corner for some of us (in fact all of us, if we are talking about financial implications, for the working population as a whole).
 

janjan

Registered User
Jan 27, 2006
229
0
63
Birmingham
I watched this program tonight.
Kevin did i think, a good insight into most aspects of how Dementia effects both sufferer and carer, in a direct attitude. And also on what should be sorted out now for the future.