Article in Daily Mail by Sarah Vine

[Unhappy15]

Good Morning everyone,
Just had to let you all know that there is an excellent article in today's Mail Online. Its by Sarah Vine and it is :-
'Mugged for suffering the cruellest of diseases, Sarah Vine on the needless injustices facing people affected by dementia.'
Certainly worth a read.
I hope we all have a peaceful day.
Kathy

 

[PalSal]

Good Morning everyone,
Just had to let you all know that there is an excellent article in today's Mail Online. Its by Sarah Vine and it is :-
'Mugged for suffering the cruellest of diseases, Sarah Vine on the needless injustices facing people affected by dementia.'
Certainly worth a read.
I hope we all have a peaceful day.
Kathy

@KATHY, now the dilemma do you report this journalist, Sarah Vine for using words like suffering on her article. We have been directed by the new pamphlet not to depict Alzheimers with words like suffering and burdens etc. We were having a big discussion about the Societys pamphlet under media. But it was locked and frozen, No more comments.
How can Alzheimers be discussed without talking about suffering.

 

[Louise7]

Here's the link: https://www.dailymail.co.uk/debate/...tml?ns_mchannel=rss&ito=1490&ns_campaign=1490

I think it's a 'mish mash' of an article and uninformed, mixing care home costs with costs for NHS treatment. Plus she advocates that everyone should remain cared for in their own homes 'in familiar surroundings, not in the hands of strangers in institutions'. Doesn't seem to have any personal experience of dementia or caring for someone with dementia.

 

[kindred]

Here's the link: https://www.dailymail.co.uk/debate/...tml?ns_mchannel=rss&ito=1490&ns_campaign=1490

I think it's a 'mish mash' of an article and uninformed, mixing care home costs with costs for NHS treatment. Plus she advocates that everyone should remain cared for in their own homes 'in familiar surroundings, not in the hands of strangers in institutions'. Doesn't seem to have any personal experience of dementia or caring for someone with dementia.

Absolutely, the strain on us is, as usual ignored. Kindred.

 

[AliceA]

It is very discriminatory, if it was not there would be far more support to provide more help at the right time. It would also help smooth out the fee system.
I feel Carers for all ages should have a proper registered training system.
Dementia is not fully understood in many medical situations let alone care.

The lesson I have taken is that, one cannot trust politicians.
I was there at the start of the NHS. It was sold as from the cradle to the grave, so people paid their taxes and put up with post war austerity to provide a better future for future generations. This is not party political, the word means organising the state for the benefit of its people.
People struck by dementia of all kind and the people who care for them are not being considered

On a lighter note, many took advantage of the free dental service and some had all their teeth out to save problems in future. One was greeted by identical very white grins everywhere.

 

[love.dad.but..]

Hmm...this is the same reporter who wrote in her column last year that under no circumstances would she ever place an elderly parent in a care home even those with dementia and how selfish those of us who do..are. I emailed my disappointment at her comments but as you may guess received no acknowledgement.

 

[Hair Twiddler]

Yes, @love.dad.but.. agree totally with you, it wasn't at all in sync with her words in this earlier article.
It also got me thinking (along lighter lines) when I skimmed through the rest of her article and laughed out loud at SV's exact words from the DM article(shown in red in following FICTITIOUS NON-POLITICAL personal observation)
Here follows a snapshot of a drama I am writing....

Venue. Hotel room somewhere in Birmingham.

Blonde smiling man enters right hand side.

Man: Hello!

S (wife): Hey Babes!

Man/"Babes": Didn't see you at conference today. Been busy writing?

S (wife): I value my sanity too much to get caught up in something that frankly serves almost no useful purpose other than to provide a platform for chancers, lunatics and egomaniacs.

Still working on Babes reply...
(honestly that's what SV did say in the article)

 

[Beate]

I don't read that silly paper anymore.

 

[Bunpoots]

I don't read that silly paper anymore.

It's not a newspaper. It's a gossip rag. I once bought it for some money off supermarket coupons....and I couldn't find any news in it

 

[AliceA]

@KATHY, now the dilemma do you report this journalist, Sarah Vine for using words like suffering on her article. We have been directed by the new pamphlet not to depict Alzheimers with words like suffering and burdens etc. We were having a big discussion about the Societys pamphlet under media. But it was locked and frozen, No more comments.
How can Alzheimers be discussed without talking about suffering.

I know how people suffer when things like driving are taken away, they suffer because they have to cope with things that were once easy.

It's not a newspaper. It's a gossip rag. I once bought it for some money off supermarket coupons....and I couldn't find any news in it

It twists the truth for headlines unfortunately doing so much harm. Headlines do not help any of us.

 

[PalSal]

I know how people suffer when things like driving are taken away, they suffer because they have to cope with things that were once easy
It twists the truth for headlines unfortunately doing so much harm. Headlines do not help any of us.

@AliceA
I believe patients and families do suffer I think it is unconscionable to try and say otherwise. I feel terribly caught in this directive AS, I see the point of the image of Early On Set patients and that they require respect (well ever one does) and the image and portrayal of the disease is very influencial. But my facts and experience shows that everyone suffers and there are huge burdens. I am personally delighted she uses words like suffering.
Unfortunately, people have to find ways to survive.....denial seems to be a course of action for survival.
This might interest you
https://blog.alzheimers.org.uk/dementia-insight/positive-language-media-guide/

 

[kindred]

@AliceA
I believe patients and families do suffer I think it is unconscionable to try and say otherwise. I feel terribly caught in this directive AS, I see the point of the image of Early On Set patients and that they require respect (well ever one does) and the image and portrayal of the disease is very influencial. But my facts and experience shows that everyone suffers and there are huge burdens. I am personally delighted she uses words like suffering.
Unfortunately, people have to find ways to survive.....denial seems to be a course of action for survival.
This might interest you
https://blog.alzheimers.org.uk/dementia-insight/positive-language-media-guide/

Yes, I agree. I guess you could say people who are experiencing dementia ... but that is not really accurate is it. I certainly suffered, my beloved husband who has dementia certainly suffered, oh yes, and in my time with him in his nursing home I have seen so much suffering, attended to lovingly by the staff.
I agree about denial.
I think one of the issues here, too, is that early stage dementia is often mild and the people are seen about in their communities, can go to singing, day centres etc. As the disease progresses, people stay home, exhausted and desperate, and there is the progression to nursing homes as families can no longer cope. This is traumatic and certainly full of suffering. These middle and later stages are rarely seen in the community.

I also know that too much talk about suffering causes readers to turn the page ...
warmest, good to talk about this isn't it. Kindred.

 

[Sad Staffs]

Well I’m suffering. I’m suffering because I’m watching my husband, who isn’t the same person anymore, struggle. He is suffering because it upsets him that he can’t do what he used to. Is that suffering? What else do you call it. He knows there is something wrong, admits he has dementia, but I’m sure he doesn’t really believe it. I don’t know what goes on in his mind when he sits so quietly so much of the day, just staring.

I’m sick of politics and politicians pontificating about things they have no real knowledge of. Saying what they will or won’t do, coming up with policies and practices, but not funding them effectively. All they do is rob Peter to pay Paul, and Paul just gets poorer.

You have to have been there, done that, to understand what dementia means. Until a very very short while ago, I had absolutely no idea... now both my husband and I are suffering.

Sorry, I guess today isn’t a good day...

 

[kindred]

Well I’m suffering. I’m suffering because I’m watching my husband, who isn’t the same person anymore, struggle. He is suffering because it upsets him that he can’t do what he used to. Is that suffering? What else do you call it. He knows there is something wrong, admits he has dementia, but I’m sure he doesn’t really believe it. I don’t know what goes on in his mind when he sits so quietly so much of the day, just staring.

I’m sick of politics and politicians pontificating about things they have no real knowledge of. Saying what they will or won’t do, coming up with policies and practices, but not funding them effectively. All they do is rob Peter to pay Paul, and Paul just gets poorer.

You have to have been there, done that, to understand what dementia means. Until a very very short while ago, I had absolutely no idea... now both my husband and I are suffering.

Sorry, I guess today isn’t a good day...

Thank you darling and I expect the following will be edited out.
Not long ago, in the middle of the night, I was trying to help my husband stand up as he had thrown himself out of bed for the fifth time. He was covered in poo and frightened to bits, all he could say was help me, help me. I have a bad hip and sometimes can scarcely stand myself, I did not know where to start, but of course we have to, so for the fifth time I help him up, knowing this will happen again in half an hour. I clean him and the bed and then me, by which time he was out of bed again.
How can anyone, anyone say this is not suffering? Why will they not acknowledge and honour our experience?
With you all the way, SS. with love, Geraldine aka kindred. xxx

 

[Sad Staffs]

@kindred
Love you and your posts Geraldine.
How can they edit the truth? Perhaps the truth is too hard to bear, and people just want niceties. Well life isn’t like that for some.
Take care Geraldine, and thank you, love B xx

 

[Starbright]

Yes, I agree. I guess you could say people who are experiencing dementia ... but that is not really accurate is it. I certainly suffered, my beloved husband who has dementia certainly suffered, oh yes, and in my time with him in his nursing home I have seen so much suffering, attended to lovingly by the staff.
I agree about denial.
I think one of the issues here, too, is that early stage dementia is often mild and the people are seen about in their communities, can go to singing, day centres etc. As the disease progresses, people stay home, exhausted and desperate, and there is the progression to nursing homes as families can no longer cope. This is traumatic and certainly full of suffering. These middle and later stages are rarely seen in the community.

I also know that too much talk about suffering causes readers to turn the page ...
warmest, good to talk about this isn't it. Kindred.[/QUOTE

 

[Starbright]

You have absolutely hit the nail on the head @kindred ...(((Hugs))) A x

 

[love.dad.but..]

Thank you darling and I expect the following will be edited out.
Not long ago, in the middle of the night, I was trying to help my husband stand up as he had thrown himself out of bed for the fifth time. He was covered in poo and frightened to bits, all he could say was help me, help me. I have a bad hip and sometimes can scarcely stand myself, I did not know where to start, but of course we have to, so for the fifth time I help him up, knowing this will happen again in half an hour. I clean him and the bed and then me, by which time he was out of bed again.
How can anyone, anyone say this is not suffering? Why will they not acknowledge and honour our experience?
With you all the way, SS. with love, Geraldine aka kindred. xxx

I too felt that Dad from his challenging moderate stage onwards and to end of life was tormented and therefore suffered both physically and emotionally as did I in both helping him and witnessing some things as a daughter I never imagined I would. I think describing how we as carers feel and how from what we see first hand our pwd may feel is so individual and unique to each person and their circumstance everyone should be free to describe it as they feel relevant to them whilst I understand that this may perhaps upset some in early stages. Dad did not 'live well' with dementia.

 

[kindred]

I too felt that Dad from his challenging moderate stage onwards and to end of life was tormented and therefore suffered both physically and emotionally as did I in both helping him and witnessing some things as a daughter I never imagined I would. I think describing how we as carers feel and how from what we see first hand our pwd may feel is so individual and unique to each person and their circumstance everyone should be free to describe it as they feel relevant to them whilst I understand that this may perhaps upset some in early stages. Dad did not 'live well' with dementia.

Thank you, I so so agree. We are just being denied every step of the way otherwise. I doubt whether Stephen Hawking was censored because he was hardly physically a poster boy for MND. But then of course there is this overwhelming fear of madness ...Thank you so very much. Warmest, Kindred.

 

[Kikki21]

I think if we all wrote about our experiences with dementia in a national newspaper ( a proper one) then most people would be horrified.
Unless you have been through it or are going through it then nothing can really prepare you.

Most people do not know what happens in any stage of dementia, most people still think it is just a loss of memory when it is so much more.

I think of all the people who believed that the NHS would help them right to the end, how they must feel or their family when they are told that they need to sell their homes to pay for their care. That there is the real scandal with this illness. And at least the article does address that.
So yes they paid taxes & NI all their lives only for the final years to be filled with uncertainty & fear. It’s another reason why people are no longer able to buy houses or get onto a housing ladder as less houses are being inherited. Unless you have a huge house & sell up & go into care then the chances are that you have a modest amount of a house & that there will be nothing much left to inherit. Currently capped at just over £23k.

There is talk that the figure should be rising to £100k which is more realistic for some people but until that happens.......