PC terminology-Will TP entries have to comply to this terminalogy?

[PalSal]

I just read the on the Alzheimer’s Society website which suggested that we all contact journalists and media when there are references to Alzheimer’s and dementia in any of the following terms.

• Sufferer or victim – a diagnosis of dementia doesn’t define anyone and we should never label people with dementia. Use ‘people (or person) living with dementia’ instead.
• Senile, pre-senile or demented – these outdated words disempower people with dementia by making them seem passive, childlike, or worthy of pity.
• ‘Away with the fairies’ or ‘not all there’ – these slang expressions and others are derogatory and very insulting to people with dementia.
• Burden – this dehumanizes someone, and makes them out to be nothing more than a drain on time and resources rather than a person.
• Hopeless or tragic – it is important to be realistic about dementia while not being overly pessimistic or frightening. Use words like ‘challenging’, ‘life-changing’ or ‘stressful’ instead.

Certainly in our shares here on TP point many of us speak of our experience as hopeless and tragic. This weekend I shared that my husband spent much of Saturday sitting on the hope chest in the hallway staring at the walls. It is pitiful, and he is passive and childlike. Only changing his position when I encourage him to come with me or do something with me, instigating a change for him.

I know that "persons living with Alzheimer’s" are suffering. I have personally witnessed the suffering which my husband experienced when he was aware of the changes going on with his mental capacity. We have lived his decline for 16 years, and he has suffered. We, his family, keep going on doing the best that we can each and every day.


What irritates me more in the media where there are pictures and images showing happy smiling people, who do not seem to be sharing our experience. Where are the pictures of the pain and suffering? The oblivion. IT IS IMPORTANT TO BE REALISTIC, how is that overly pessimistic or too frightening. When there is clarity about what to expect from the disease, one can plan, accept and manage this "life changing" disease. I am much more concerned about these forced depictions of "happy persons living with Alzheimer’s" which I am constantly given. Contented Dementia is not a 100% life experience. I think uninformed public needs to also see the images of the struggle, confusion and loss experienced by "those living with Alzheimer’s" and their families.


I would love to hear others comments on this issues. Do any of you feel sad or upset when confronted with pictures that show happy carers and happy "persons living with Alzheimer’s”? Does it make you feel inadequate that you cannot live up to the image of the happy carer image? I do my best to make moments of joy and happiness in the life of my husband and in my own life, but it becomes harder and harder for him to respond to the world around him. And those are the facts of our lives whether they are PC or not. I hope to see you all will see these comments and respond.

I am powerless over the progress of Alzheimer's disease, if I am powerless then it is possible I am a victim of the disease. Just my opinion.

 

[karaokePete]

Personally I always try to be upbeat in relation to my wife and her experience of dementia. I don’t take this attitude to be PC. I take it because I have always tried to be optimistic in the face of any challenge as I find my optimism motivates me to take whatever action is required to make life as good as it can be - and that applies to all aspects of my life.

My wife was under the care of medical professionals for depression and anxiety for decades before I met her. Despite the professionals not producing a resolution for her I continue to try to help her with this as well as her experience of dementia. Why, because to do anything else would be picked up by her and the feelings that would generate would probably produce a bad reaction in her. My wife, like many people dealing with dementia, may struggle with cognitive skills but she can still pick up on feelings. Indeed, some recent reading I did suggested that right to their end the ability to read feelings and body language are enhanced in a person living with dementia. I sometimes wonder if this is one of the reasons that apathy, depression and anxiety are so common in people living with dementia.

I think that it’s important to be positive in all aspects of our lives with our loved ones. However, I also think that it’s important that we can have a rant on the forum when the stress builds, as long as we stick to the forum rules.

 

[nae sporran]

I think you have to be sensitive to those who have dementia and to their carers, on here and in the newspapers. In my early days on here I upset another poster by saying my partner feels dementia means she is doolaly. That frightens her, but it is not a term I would use lightly for fear of stigmatising those with the condition.
The term "living well with dementia" does not quite sit with my experience though, and living well occasionally despite dementia seems more realistic. It is a hard balancing act, and not an easy one when we are under stress and seeing the worst effects on our loved ones.

 

[karaokePete]

As an added comment, I have thought about the last 2/3 years and the times when I have encountered problems in relation to dementia. On occasions I have researched a solution and other times I have reached out for help, sometimes when in tears. I don’t recall ever thinking the position was hopeless or that my wife was a burden or too much trouble.

 

[PalSal]

I think you have to be sensitive to those who have dementia and to their carers, on here and in the newspapers. In my early days on here I upset another poster by saying my partner feels dementia means she is doolaly. That frightens her, but it is not a term I would use lightly for fear of stigmatising those with the condition.
The term "living well with dementia" does not quite sit with my experience though, and living well occasionally despite dementia seems more realistic. It is a hard balancing act, and not an easy one when we are under stress and seeing the worst effects on our loved ones.

@nae sporran Agreed

 

[carolynp]

I just read the on the Alzheimer’s Society website which suggested that we all contact journalists and media when there are references to Alzheimer’s and dementia in any of the following terms.

• Sufferer or victim – a diagnosis of dementia doesn’t define anyone and we should never label people with dementia. Use ‘people (or person) living with dementia’ instead.
• Senile, pre-senile or demented – these outdated words disempower people with dementia by making them seem passive, childlike, or worthy of pity.
• ‘Away with the fairies’ or ‘not all there’ – these slang expressions and others are derogatory and very insulting to people with dementia.
• Burden – this dehumanizes someone, and makes them out to be nothing more than a drain on time and resources rather than a person.
• Hopeless or tragic – it is important to be realistic about dementia while not being overly pessimistic or frightening. Use words like ‘challenging’, ‘life-changing’ or ‘stressful’ instead.

Certainly in our shares here on TP point many of us speak of our experience as hopeless and tragic. This weekend I shared that my husband spent much of Saturday sitting on the hope chest in the hallway staring at the walls. It is pitiful, and he is passive and childlike. Only changing his position when I encourage him to come with me or do something with me, instigating a change for him.

I know that "persons living with Alzheimer’s" are suffering. I have personally witnessed the suffering which my husband experienced when he was aware of the changes going on with his mental capacity. We have lived his decline for 16 years, and he has suffered. We, his family, keep going on doing the best that we can each and every day.


What irritates me more in the media where there are pictures and images showing happy smiling people, who do not seem to be sharing our experience. Where are the pictures of the pain and suffering? The oblivion. IT IS IMPORTANT TO BE REALISTIC, how is that overly pessimistic or too frightening. When there is clarity about what to expect from the disease, one can plan, accept and manage this "life changing" disease. I am much more concerned about these forced depictions of "happy persons living with Alzheimer’s" which I am constantly given. Contented Dementia is not a 100% life experience. I think uninformed public needs to also see the images of the struggle, confusion and loss experienced by "those living with Alzheimer’s" and their families.


I hope this post is allowed to remain. I seem to get removed lately as my opinions become questionably non PC. But I would love to hear others comments on this issues. Do any of you feel sad or upset when confronted with pictures that show happy carers and happy "persons living with Alzheimer’s”? Does it make you feel inadequate that you cannot live up to the image of the happy carer image? I do my best to make moments of joy and happiness in the life of my husband and in my own life, but it becomes harder and harder for him to respond to the world around him. And those are the facts of our lives whether they are PC or not. I hope to see you all will see these comments and respond.

I am powerless over the progress of Alzheimer's disease, if I am powerless then it is possible I am a victim of the disease. Just my opinion.

Hi @PalSal and thank you so much for what you say here. On a personal level, I have been wrestling with these issues within my family and among friends. It is very, very upsetting to be told my OH with FTD is doing wonderfully, is content. It is equally terrible, I find, to be told to “think positive”. (It is also ungrammatical!) Despite being outwardly unaware of his dementia, my OH, I truly believe, wrestles at the deepest, most existential level with what is happening to him - and it is agony.

One of my children was intellectually disabled and during his lifetime I was constantly supposed to be consoled by being told, even by strangers, that at least he was happy and never had a sad day in his life. It was nonsense. He was indeed a happy child but that didn’t mean he was unaware of his difference from others. Daily life was a struggle despite his cheeriness and bravery.

The sanitised images you describe serve only to assuage the guilt of those who have no involvement in this terrible disease and to obviate the need for decent funding. The language to which you refer is, in my opinion, brutally insensitive to people who are actually affected, in whatever way, by this condition. Both images and language also serve, sadly, to deny our experience or at least to discount it. When I see one of those images, or read one of those texts, I do not find my reality reinforced, I find it undermined. This applies also, and even more insidiously, to the untoward comments from family and friends.

Quite often on TP carers speak of fearing they are going mad. Part of this sense of disorientation must surely be the disconnect between public statements and images, on the one hand, such as those you describe, and the reality of daily life chez nous.

 

[PalSal]

Personally I always try to be upbeat in relation to my wife and her experience of dementia. I don’t take this attitude to be PC. I take it because I have always tried to be optimistic in the face of any challenge as I find my optimism motivates me to take whatever action is required to make life as good as it can be - and that applies to all aspects of my life.

My wife was under the care of medical professionals for depression and anxiety for decades before I met her. Despite the professionals not producing a resolution for her I continue to try to help her with this as well as her experience of dementia. Why, because to do anything else would be picked up by her and the feelings that would generate would probably produce a bad reaction in her. My wife, like many people dealing with dementia, may struggle with cognitive skills but she can still pick up on feelings. Indeed, some recent reading I did suggested that right to their end the ability to read feelings and body language are enhanced in a person living with dementia. I sometimes wonder if this is one of the reasons that apathy, depression and anxiety are so common in people living with dementia.

I think that it’s important to be positive in all aspects of our lives with our loved ones. However, I also think that it’s important that we can have a rant on the forum when the stress builds, as long as we stick to the forum rules.

@karaokePete I do try to be and stay positive. And I am active in raising lots of money for Alzheimers research over the last 16 years. And I feel I am a very positive person. But I like straight and clear direction...for me that means an honest description of the how the disease with go forward. Thanks for your input Pete.

 

[PalSal]

Hi @PalSal and thank you so much for what you say here. On a personal level, I have been wrestling with these issues within my family and among friends. It is very, very upsetting to be told my OH with FTD is doing wonderfully, is content. It is equally terrible, I find, to be told to “think positive”. (It is also ungrammatical!) Despite being outwardly unaware of his dementia, my OH, I truly believe, wrestles at the deepest, most existential level with what is happening to him - and it is agony.

One of my children was intellectually disabled and during his lifetime I was constantly supposed to be consoled by being told, even by strangers, that at least he was happy and never had a sad day in his life. It was nonsense. He was indeed a happy child but that didn’t mean he was unaware of his difference from others. Daily life was a struggle despite his cheeriness and bravery.

The sanitised images you describe serve only to assuage the guilt of those who have no involvement in this terrible disease and to obviate the need for decent funding. The language to which you refer is, in my opinion, brutally insensitive to people who are actually affected, in whatever way, by this condition. Both images and language also serve, sadly, to deny our experience or at least to discount it. When I see one of those images, or read one of those texts, I do not find my reality reinforced, I find it undermined. This applies also, and even more insidiously, to the untoward comments from family and friends.

Quite often on TP carers speak of fearing they are going mad. Part of this sense of disorientation must surely be the disconnect between public statements and images, on the one hand, such as those you describe, and the reality of daily life chez nous.

 

[PalSal]

@carolynp
Thank you soooooooooo much for your response. I love your terminology "sanitised images"
You have very accurately described what I am feeling. Thank you so much for your comments and solidarity.

 

[karaokePete]

@karaokePete I do try to be and stay positive. And I am active in raising lots of money for Alzheimers research over the last 16 years. And I feel I am a very positive person. But I like straight and clear direction...for me that means an honest description of the how the disease with go forward. Thanks for your input Pete.

By the way, I wasn’t being critical of anyone’s attitude. I too like straight and clear direction, however, I don’t find that comes with caring for a person experiencing dementia. Other posts since mine confirm the awareness aspect and I know that in my home the slightest wrong word has an impact on my wife and so isn’t good for either of us. That doesn’t mean that I’m saintly, I know the effect because of experiences had when stress has got the better of me and I’ve said the wrong thing.

I don’t give a lot of time to being PC. I was just stating how I deal with life and will deal thus with dementia as it comes, if I am able.

 

[Sirena]

The sanitised images you describe serve only to assuage the guilt of those who have no involvement in this terrible disease and to obviate the need for decent funding. The language to which you refer is, in my opinion, brutally insensitive to people who are actually affected, in whatever way, by this condition. Both images and language also serve, sadly, to deny our experience or at least to discount it. When I see one of those images, or read one of those texts, I do not find my reality reinforced, I find it undermined. This applies also, and even more insidiously, to the untoward comments from family and friends.

I completely agree with you, I think those not directly involved turn a blind eye to the suffering and needs of those with dementia and their carers, and as you say this then allows funding to remain inadequate. When people ask how my mother is, they don't really want to know - they want the sanitised version of dementia as being a bit dotty and forgetful, they don't want my reply to veer anywhere near the unpleasant truth.

 

[kindred]

I just read the on the Alzheimer’s Society website which suggested that we all contact journalists and media when there are references to Alzheimer’s and dementia in any of the following terms.

• Sufferer or victim – a diagnosis of dementia doesn’t define anyone and we should never label people with dementia. Use ‘people (or person) living with dementia’ instead.
• Senile, pre-senile or demented – these outdated words disempower people with dementia by making them seem passive, childlike, or worthy of pity.
• ‘Away with the fairies’ or ‘not all there’ – these slang expressions and others are derogatory and very insulting to people with dementia.
• Burden – this dehumanizes someone, and makes them out to be nothing more than a drain on time and resources rather than a person.
• Hopeless or tragic – it is important to be realistic about dementia while not being overly pessimistic or frightening. Use words like ‘challenging’, ‘life-changing’ or ‘stressful’ instead.

Certainly in our shares here on TP point many of us speak of our experience as hopeless and tragic. This weekend I shared that my husband spent much of Saturday sitting on the hope chest in the hallway staring at the walls. It is pitiful, and he is passive and childlike. Only changing his position when I encourage him to come with me or do something with me, instigating a change for him.

I know that "persons living with Alzheimer’s" are suffering. I have personally witnessed the suffering which my husband experienced when he was aware of the changes going on with his mental capacity. We have lived his decline for 16 years, and he has suffered. We, his family, keep going on doing the best that we can each and every day.


What irritates me more in the media where there are pictures and images showing happy smiling people, who do not seem to be sharing our experience. Where are the pictures of the pain and suffering? The oblivion. IT IS IMPORTANT TO BE REALISTIC, how is that overly pessimistic or too frightening. When there is clarity about what to expect from the disease, one can plan, accept and manage this "life changing" disease. I am much more concerned about these forced depictions of "happy persons living with Alzheimer’s" which I am constantly given. Contented Dementia is not a 100% life experience. I think uninformed public needs to also see the images of the struggle, confusion and loss experienced by "those living with Alzheimer’s" and their families.


I hope this post is allowed to remain. I seem to get removed lately as my opinions become questionably non PC. But I would love to hear others comments on this issues. Do any of you feel sad or upset when confronted with pictures that show happy carers and happy "persons living with Alzheimer’s”? Does it make you feel inadequate that you cannot live up to the image of the happy carer image? I do my best to make moments of joy and happiness in the life of my husband and in my own life, but it becomes harder and harder for him to respond to the world around him. And those are the facts of our lives whether they are PC or not. I hope to see you all will see these comments and respond.

I am powerless over the progress of Alzheimer's disease, if I am powerless then it is possible I am a victim of the disease. Just my opinion.

I think my fear is that if the truth about how awful it can be were to be the one of the images, then people living with dementia would be shunned, and their families, even more than they are now. This is no new situation. I was carer and shared carer for my mum who had MS and was completely paralysed from the time i was four. When I went to Uni, I had to go back every weekend to give my dad respite. One of my professors, when I said I had to go and could not go to an event he had organised, said I am sure your mother is a beacon to the community.
I was, as I did every weekend, going back into hell.
Kindred.

 

[Duggies-girl]

I am powerless over the progress of Alzheimer's disease, if I am powerless then it is possible I am a victim of the disease. Just my opinion.[/QUOTE] Yes I agree with that.

My dad describes himself as going barmy whenever he realises he forgets something and I just nod and agree with him and we laugh. He does have a sense of humour so that is a bonus at least.

Is dad a burden, well yes he is, not his fault, not my fault, just a fact. I suppose that is an unpleasant thing to say but I would be lying if I said otherwise. I do not appreciate having to spend all of my time looking after this elderly man who is completely unaware that he is being looked after but I will carry on as long as I can. I could do without it and would rather be enjoying my forced retirement in other ways.

Is dad contented, Yes I would say he is so I am doing something right. Am I contented, No I feel like a caged animal. My dad is a lovely, kind and pleasant gentleman and I love him very much but I still feel that this situation is not how life should be for either of us and I know that he would feel the same if he only knew.

I feel like this caring has been slowly forced upon me and I don't like it one bit but I am stuck with it.

Dementia has a lot to answer for as far as I am concerned and I greatly admire those that willingly and happily take on the task/joy of caring because for me it has been very difficult to come to terms with.

 

[Sirena]

I think my fear is that if the truth about how awful it can be were to be the one of the images, then people living with dementia would be shunned, and their families, even more than they are now.

I do understand what you're saying - but unless the reality is acknowledged, adequate funding for support will never be made available.

 

[kindred]

I do understand what you're saying - but unless the reality is acknowledged, adequate funding for support will never be made available.

I tried, Sirena. I had a very very forthright letter published in the times recently followed by a lot of others equally forthright on the plight of carers. I said it was like being caged up with someone who was mad and unpredictable. But after that, I couldn't see how to take it any further ... these things have to be taken further. I wish I knew how. Warmest, thank you, Kindred.

 

[LadyA]

This kind of "look always and only on the bright side" thing has been one of my bugbears for many years. Yes, there are those who can and do live well with dementia, and where and as long as that's possible, then yes, go for it! Make the very most of life. But to only allow that idealogy is, in my opinion, to demean and deny the real suffering that my husband and many others go through with this disease. And he wasn't the only one who suffered the affects of his illness. I suffered from his Alzheimer's Disease. My daughter suffered from his Alzheimer's disease. But we, at least, didn't suffer the 24 hour horrific terrors and paranoia that he did.

And maybe I'm a bit too cynical, but I sometimes think that this constant push of the "Living well with Dementia" theme is very convenient, from a financial point of view. Because if everyone can indeed live well with dementia, then there won't be a need for so much support, will there? Certainly not any increase in support. It conveniently distracts from the fact that, ultimately, it is an incurable, terminal illness, and makes it sound like a minor inconvenience, like a touch of arthritis or bunions.

 

[kindred]

This kind of "look always and only on the bright side" thing has been one of my bugbears for many years. Yes, there are those who can and do live well with dementia, and where and as long as that's possible, then yes, go for it! Make the very most of life. But to only allow that idealogy is, in my opinion, to demean and deny the real suffering that my husband and many others go through with this disease. And he wasn't the only one who suffered the affects of his illness. I suffered from his Alzheimer's Disease. My daughter suffered from his Alzheimer's disease. But we, at least, didn't suffer the 24 hour horrific terrors and paranoia that he did.

And maybe I'm a bit too cynical, but I sometimes think that this constant push of the "Living well with Dementia" theme is very convenient, from a financial point of view. Because if everyone can indeed live well with dementia, then there won't be a need for so much support, will there? Certainly not any increase in support. It conveniently distracts from the fact that, ultimately, it is an incurable, terminal illness, and makes it sound like a minor inconvenience, like a touch of arthritis or bunions.

I so agree, thank you very much. The suffering is real and relentless for both the beloved who is living with dementia and the carer. I survived as long as I did by having a clear and practical suicide plan for myself. My main concern was how to end my life while ensuring my husband was looked after on the day and afterwards. Knowing there was at least that way out got me through some terrible and frightening times. Yes, it certainly is down to finances, of course it is. Awful. Thank you so much. Warmest, Kindred

 

[Andrew_McP]

I'm sure such guidelines are always created with the very best of intentions. But trying to spin dementia as anything other than a human tragedy is... well, being selective with the truth. That doesn't mean we can't try to be compassionate in our interactions and positive in our approach to caring though. I imagine that's what the guidelines are trying to encourage among the wider public.

I have no problem with that, but I do have ongoing concerns that the public face of dementia has had too much plastic surgery. At the same time I have to remember that my mother's FTD type condition is towards the challenging end of the dementia spectrum, and that more positive experiences are possible, especially with early diagnosis.

"More positive" is plastic surgery itself though; I mean less negative, because I don't think there's anyone with dementia whose original self could look upon their new life without despairing.

At the end of the day dementia research and management isn't going to become the priority it needs to be unless we, as a society, face up to the ugly truths. There's no point in terrifying people, but I think we have to represent our own experience of dementia accurately on the forum, warts and all. I doubt moderation would seek to suppress that, mainly because the poor old mods would then have a full time job!

My mother is definitely a dementia sufferer, and I definitely suffer from her suffering. We are both a financial burden to the State now and neither of us were ever big earners, so it's not as if we've notionally 'banked' a big contribution to social care for others in the past. My hope is that I can care for her long enough that when I lose this fight, her resources will outlive her and the State (or at least local Council Tax payers) will not have to take over her care. Then I can get back to trying not to be a burden to the State myself.

That's a fairly cold way of looking at it, but despite my fairly socialist inclinations, I've always been aware that civilisation is run on a spreadsheet, not on a hug and a prayer. However these days I'll try a hug and a prayer as well, just on the off chance the placebo effect works.

Anyway, enough sitting here pontificating. Time to go walk off some of Mum's anxiety before it builds up again, watch some leaves fall off trees, and buy some milk and wet wipes on the way back. (At a push I could do without the milk, but not the wet wipes!)

 

[maryjoan]

I have read this thread with interest, and I can only state my views which may not be shared by others.....

Political Correctness is simply papering over the cracks so things can no longer be seen in their true state.

Person of Colour = what????
do you ever hear of Person of Whiteness ????????

" A Person Living with Dementia" ???? On here we frequently refer to PWD - person with dementia.

To find the truth of the whole situation, I would encourage the PC PEOPLE to sit for a couple of hours and trawl through this forum - and actually learn about dementia and what it does to our lives. I try not to come on here, I really do, and I fail, because I need your support - but every time I look at a different thread I see someone living a sad and sorry life, bowed down with stress and despair.

You can wrap it up any way you like, but it will not change the truth of the matter, and at the end of the day, the vast majority of people with dementia will never read these words, so does it matter, who will it offend? Maybe the carers.........

 

[Sirena]

I tried, Sirena. I had a very very forthright letter published in the times recently followed by a lot of others equally forthright on the plight of carers. I said it was like being caged up with someone who was mad and unpredictable. But after that, I couldn't see how to take it any further ... these things have to be taken further. I wish I knew how. Warmest, thank you, Kindred.

I remember you doing that Kindred, that was why I was surprised by your previous post - because I know you were trying to raise awareness of the real issues.