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

[Sad Staffs]

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• Senile, pre-senile or demented – these outdated words disempower people with dementia by making them seem passive, childlike, or worthy of pity.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.

There is so much here worthy of comment... but I particularly wanted to mention how I switch off when I see leaflets, documents, programmes, whatever depicting happy smiling laughing people. Is life like that? Mine certainly isn’t. Today we have had a verbal grumpy aggressive day. Nothing suits him, especially me. Yesterday I looked at him and if it wasn’t for the fact that he can’t remember that he has to take his pants down every time he uses the loo, then I would have said it was a nice quiet day. Perhaps it is my fault that there are no happy smiling times anymore. I don’t know what I’m supposed to do. I don’t understand this life we now have. I don’t want this life anymore but I love him, I care for him, and I’m stuck with it.

 

[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.

Thank you, you are right. I've just recently heard some awful tales of shunning the families of dementia sufferers and taunting. I think it lowered my courage. I will get it back again. You are right. Thank you for remembering. I think I hoped it would lead to a kind of outrage that no one should have to live like this Without maximum support.
Something strange happened to me about the real issues. A district nurse came out when OH had a bedsore and he was such a kindly man that I broke down and told him something of what my life was like, including being attacked. He immediately got on to the safeguarding service saying that my life was probably in danger.

 

[kindred]

Thank you, you are right. I've just recently heard some awful tales of shunning the families of dementia sufferers and taunting. I think it lowered my courage. I will get it back again. You are right. Thank you for remembering. I think I hoped it would lead to a kind of outrage that no one should have to live like this Without maximum support.
Something strange happened to me about the real issues. A district nurse came out when OH had a bedsore and he was such a kindly man that I broke down and told him something of what my life was like, including being attacked. He immediately got on to the safeguarding service saying that my life was probably in danger.

Sorry, that got cut short. Anyway safeguarding woman very interested and practical, wanting to take steps to remove me from situation UNTIL she asked me what was wrong with OH. And the minute I said dementia I could hear all interest go and she made excuses to end the call. I was left feeling that as a wife of a PWD my life was not worth much. It was a hard lesson. Kindred.

 

[padmag]

This disease is so sugar coated by the media I feel sick. My experience so far has been one long battle, not with Richard, but with the 'services' Yes Richard's dementia is brutal on a basic level in that he has no control over his bowels and bladder, stumbles along (if he can manage to get up) and cannot hold a conversation. In all of this he is compliant and easy going so I am lucky in that respect. However, that isn't the case for everyone and can be a lot worse. Not only do us carers take on the heavy load, with risk to our own health, we can become poor, isolated, ignored, forgotten about by family and friends, and have no outsdide life to speak of.
I do put on a good front for Richard's sake, but inside is another matter, almost like living a lie which is very stressful. As long as Richard is happy in himself (which

 

[padmag]

This disease is so sugar coated by the media I feel sick. My experience so far has been one long battle, not with Richard, but with the 'services' Yes Richard's dementia is brutal on a basic level in that he has no control over his bowels and bladder, stumbles along (if he can manage to get up) and cannot hold a conversation. In all of this he is compliant and easy going so I am lucky in that respect. However, that isn't the case for everyone and can be a lot worse. Not only do us carers take on the heavy load, with risk to our own health, we can become poor, isolated, ignored, forgotten about by family and friends, and have no outsdide life to speak of.
I do put on a good front for Richard's sake, but inside is another matter, almost like living a lie which is very stressful. As long as Richard is happy in himself (which

 

[Kevinl]

This disease is so sugar coated by the media I feel sick.
I do put on a good front for Richard's sake, but inside is another matter, almost like living a lie which is very stressful. As long as Richard is happy in himself (which

Please, please don't take this the wrong way but you accuse the media of sugar coating it then go on to say you do the same thing too by putting on a good front and living a lie aren't you both doing the same thing even though you express it differently?
How can you portray a condition that affects people so differently as if they're all the same. Some on here speak about people who're obviously very ill but not challenging, other like me have been physically abused by someone who became a bit of a monster at one stage.
I see 30 people in an EMI nursing home every day and there's some I'd take home tomorrow they're so lovely, others will do anything from throwing a cup of tea over you to biting you if you get too close to them.
Mild and moderate are stages that will affect most if not all people with AZ but the more severe symptoms don't by any means affect everyone so who is "typical" and should be used as the poster person for AZ?
There are a lot of people who post on here after diagnosis, how would they want to be portrayed, not everyone with AZ becomes as bad as our partners have, is it fair to show the worst as being the normal or typical?
K

 

[Unhappy15]

I so agree with PalSal and everyone else about the portrayal of this awful illness.
My own reality was that my husband suffers with dementia and I am its victim and it has been like this for the last six years. There are many of us on this forum who know what it is like to live in fear of the person closest to you in you own home with no help from any outside agency.
Whilst we were at that stage I was so desperate that I wanted to kill my husband and then myself, I just could not stand the relentless awfulness of the life I was leading.
When he was sectioned and went into care that side of it at least finished, but what am I left with?
A life on my own where I am still trapped because I love him and cannot go for a day without seeing him. Our life savings are being rapidly depleted because three years care has cost over £150,000 and there is no knowing how much longer this will go on for.
This illness has been a burden, it has affected my health and life. As you can see from the time of this reply it is 3.30am my sleep patterns have never returned to normal, its long wakeful nights for me.
Like so many of you I am sick to death of all the P.C rubbish that is rammed down our throats and please don't start me on living well with dementia, he does not live well with it and nor do I.The man I knew who bounced through life sits in a chair, does not communicate, has to be fed, is doubly incontinent, is he living well with dementia? I think not.
When people ask how he is I say he is in Joeland because he lives in a place that I cannot enter or know what goes on in his mind, after nearly 40 years I am the outsider in his life.
Dementia has destroyed him and to a great degree me.
Until this illness is shown in all its facets and the despair it brings nothing will be done to help the dementia sufferer and the the carer, but of course that will never happen because the financial burden that would ensue.
That is why my dear friends dementia in the media is portrayed so sugar coated because if people really knew what it can be like and the devastation it causes the fear factor would set in and the demand for proper funding would be unsustainable.
Kathy

 

[maryjoan]

I so agree with PalSal and everyone else about the portrayal of this awful illness.
My own reality was that my husband suffers with dementia and I am its victim and it has been like this for the last six years. There are many of us on this forum who know what it is like to live in fear of the person closest to you in you own home with no help from any outside agency.
Whilst we were at that stage I was so desperate that I wanted to kill my husband and then myself, I just could not stand the relentless awfulness of the life I was leading.
When he was sectioned and went into care that side of it at least finished, but what am I left with?
A life on my own where I am still trapped because I love him and cannot go for a day without seeing him. Our life savings are being rapidly depleted because three years care has cost over £150,000 and there is no knowing how much longer this will go on for.
This illness has been a burden, it has affected my health and life. As you can see from the time of this reply it is 3.30am my sleep patterns have never returned to normal, its long wakeful nights for me.
Like so many of you I am sick to death of all the P.C rubbish that is rammed down our throats and please don't start me on living well with dementia, he does not live well with it and nor do I.The man I knew who bounced through life sits in a chair, does not communicate, has to be fed, is doubly incontinent, is he living well with dementia? I think not.
When people ask how he is I say he is in Joeland because he lives in a place that I cannot enter or know what goes on in his mind, after nearly 40 years I am the outsider in his life.
Dementia has destroyed him and to a great degree me.
Until this illness is shown in all its facets and the despair it brings nothing will be done to help the dementia sufferer and the the carer, but of course that will never happen because the financial burden that would ensue.
That is why my dear friends dementia in the media is portrayed so sugar coated because if people really knew what it can be like and the devastation it causes the fear factor would set in and the demand for proper funding would be unsustainable.
Kathy

How right you are - especially in that last paragraph. Let's sugar coat the pill so there is no fear. Dementia is the Black Death of our time.

Another word I am not sure about is 'Carer' or even worse 'Care Giver' - because it implies something sweet and cosy to me. " I Care emotionally - so I am a Carer" when it is nothing of the sort.

We all suffer from emotional blackmail in this. We CARE, we LOVE a person who no longer exists. Because of that we are bamboozled into dragging our very lives to the depths of unimaginable horror. Cleaning a new born babies bottom is acceptable, because that little child has yet to grow into its potential and its new life. Cleaning the bottom of a 6 foot 2 inch, 72 year old former lover - is a completely different thing......... being a carer is not a choice for us, and there is no sweetly smiling cosy feeling about dementia.

Dementia is, in it's mid stages, holding a conversation with a loved one, about something you have done, or something on the news, and to see that loved ones face, a complete blank, and the realisation that you have been talking to yourself, and will continue to do so.....

 

[Bunpoots]

I agree that dementia in all its forms is a brutal disease and I know I've been lucky with dad as he has remained generally cheerful. But this brutality is a truth which the powers that be dare not acknowledge. I admit I was totally ignorant about what dementia was really like until it hit the generation above me with a vengeance!! Previous generations, in spite of living to a ripe old age (mid 80s to 90s) were largely unaffected (we did have a few eccentrics).

Anyone with an ounce of compassion would be horrified by the reality of what some families with dementia go through but the powers that be are reluctant to ask us to put our hands in our pockets.

I think it's a fine line to be trodden between telling it as it is and not turning families affected into "untouchables". I always feel slightly uncomfortable admitting that we have been affected so heavily by dementia - but that feeling has more to do with the awareness that I may be next than any comments made by dad (or others) about "going potty"

 

[padmag]

Please, please don't take this the wrong way but you accuse the media of sugar coating it then go on to say you do the same thing too by putting on a good front and living a lie aren't you both doing the same thing even though you express it differently?
How can you portray a condition that affects people so differently as if they're all the same. Some on here speak about people who're obviously very ill but not challenging, other like me have been physically abused by someone who became a bit of a monster at one stage.
I see 30 people in an EMI nursing home every day and there's some I'd take home tomorrow they're so lovely, others will do anything from throwing a cup of tea over you to biting you if you get too close to them.
Mild and moderate are stages that will affect most if not all people with AZ but the more severe symptoms don't by any means affect everyone so who is "typical" and should be used as the poster person for AZ?
There are a lot of people who post on here after diagnosis, how would they want to be portrayed, not everyone with AZ becomes as bad as our partners have, is it fair to show the worst as being the normal or typical?
K

Hello Kevinl, I do not sugar coat Richard's condition, never have, I am open and honest (without too many graphic descriptions) to whoever wants/needs to know. I am aware of Richard's feelings so I don't go around shouting about the horrors in his presence, that is simply it. My point is the media need to balance the view they are portraying to the public. This is becoming an epidemic and will need to be financially addressed eventually, no matter how long the government think they can side line it, it will happen, as we will have a far greater aged nation in the future.
I read lots on TP after Richard's diagnosis, which helped me greatly to understand, and gave me confidence to go forward knowing what could possibly happen. Not to sweat the small stuff (which is very annoying for some carers) took a lot of the stress away. I think the good and bad need to be revealed, just being honest which TP is. I've rarely found this honesty elsewhere.
You're right no one PWD is the same, but this is my experience, which runs very closely to many others here. Even is the PWD is compliant like Richard, we both do not live well with dementia.
The AZ poster should not always portray happiness (both sufferer and carer), a more realistic view of the harsher side should be shown. - they do this for other diseases why is this different?

 

[Wifenotcarer]

Up to a point we were 'Living Well with Dementia'. OH had his moments but I could talk him round and distract with cups of tea and cookies. A big hug worked wonders in reassuring him and for me there was some reward in the feeling that I was doing my best for him and the occasional heartfelt thank you from OH.

'Those days are past now' - He views me as his Gaoler, keeping him prisoner here when all he wants is to go home to his Mum and Dad. It is a weekly battle to get him ready in time for his Wednesday Day (well 5 hours actually) Care, though thankfully, he is still cheerful & polite to the volunteer who collects him but he comes home exhausted and grumpy, accuses me of having been up to all sorts while he was away (I wish). He objects to me going out to work in the garden, constantly interrupts to summon me back into the house and so on, and on and on. This past 10 days have been hell, with the decorator in painting two rooms and the Hearing Aids AWOL again - he put them in a safe place.

Since Incontinence has become a daily addition to the mix, our daughters have, understandably, become reluctant to take charge for a whole day or afternoon. They find that if I am absent for more than 5 minutes that he will not settle, goes looking for me, seems to believe I will never come back. NOW we are certainly not Living Well with Dementia and according to all the guidelines for Carers, I am failing on all counts.

 

[B72]

But surely it’s not a question of the funders deciding which terminology to use, or producing posters etc. Charities who support people and their carer’s do that. Many charities have changed their names because they want to avoid pejorative terminology. Action Cerebral Polsy for example.

And the reality of many other awful situations is not shown in the media. I give one example - cancer. A very close friend of mine recently died of cancer. You never see the reality of people in the very terminal stages in the media. It’s a shock. What about the way people often avoid recently bereaved people? Many people don’t know what to say or how to handle it. So they cross the road.

The balance is to portray a reality which could mean the public avoid PWD
and their carers even more than they do. I’m very wary of telling family and friends about my OHs condition, I’m afraid we’ll become more socially isolated.

The State does not fund and support us any many others as they should. It’s usually people who have experienced something who try to raise extra finds and awareness. Many of us contribute what we can to the Alzheimer’s Society.

Yes, we carers are not in a good place. But I wouldn’t want to see graphic images of some of the worst things in the media.

 

[padmag]

But surely it’s not a question of the funders deciding which terminology to use, or producing posters etc. Charities who support people and their carer’s do that. Many charities have changed their names because they want to avoid pejorative terminology. Action Cerebral Polsy for example.

And the reality of many other awful situations is not shown in the media. I give one example - cancer. A very close friend of mine recently died of cancer. You never see the reality of people in the very terminal stages in the media. It’s a shock. What about the way people often avoid recently bereaved people? Many people don’t know what to say or how to handle it. So they cross the road.

The balance is to portray a reality which could mean the public avoid PWD
and their carers even more than they do. I’m very wary of telling family and friends about my OHs condition, I’m afraid we’ll become more socially isolated.

The State does not fund and support us any many others as they should. It’s usually people who have experienced something who try to raise extra finds and awareness. Many of us contribute what we can to the Alzheimer’s Society.

Yes, we carers are not in a good place. But I wouldn’t want to see graphic images of some of the worst things in the media.

 

[padmag]

The public avoid a PWD (especially when it shows and it does) anyway, so i wouldn't be worried on that score, it will happen down the line when the PWD progresses.
We don't need to see graphic images in the media, there are other informative ways of portaying the world of a PWD and their carer, as long as it is as honest as it can be.

 

[Unhappy15]

But surely it’s not a question of the funders deciding which terminology to use, or producing posters etc. Charities who support people and their carer’s do that. Many charities have changed their names because they want to avoid pejorative terminology. Action Cerebral Polsy for example.

And the reality of many other awful situations is not shown in the media. I give one example - cancer. A very close friend of mine recently died of cancer. You never see the reality of people in the very terminal stages in the media. It’s a shock. What about the way people often avoid recently bereaved people? Many people don’t know what to say or how to handle it. So they cross the road.

The balance is to portray a reality which could mean the public avoid PWD
and their carers even more than they do. I’m very wary of telling family and friends about my OHs condition, I’m afraid we’ll become more socially isolated.

The State does not fund and support us any many others as they should. It’s usually people who have experienced something who try to raise extra finds and awareness. Many of us contribute what we can to the Alzheimer’s Society.

Yes, we carers are not in a good place. But I wouldn’t want to see graphic images of some of the worst things in the media.

 

[Unhappy15]

I was not asking for graphic images to be posted in the media but lets have some honesty about dementia.
This should start with the initial diagnosis, I had no experience of the illness, I had never seen it before my husband developed it. I was just left to get on with it without any knowledge of what to expect.
Social services and local Carer groups were of no help at all, the G.P. did not want to know he just told me to call an ambulance when my husband was being psychotic and violent.
Surely the Memory Clinic should give advice and help otherwise where do you go? In my case I was told my husband had mixed dementia and virtually on you bike pal and sort it out for yourself.
So as far as I am concerned don't sugar coat things with smiley faces and silly slogans, you don't have to portray the horror a lot of us go through, but at least be honest about what we may experience and most of all what support there is for us. Still a one word answers that - NONE.

 

[try again]

So true unhappy15. If this was cancer you would not have to spend a year convincing a doctor to organise some tests, they would be on top of it.

 

[Duggies-girl]

I suppose my dad would be the perfect candidate for a dementia poster. He is happy and probably is living well with dementia because he thinks every thing is fine and he presents as a very polite, cheerful, slightly bumbling elderly gentleman. He lives well because I am behind him all the time, putting things right, and checking he is ok.

I am not living well with his dementia though, I frequently want to run away, scream or shout and dad is still in an relatively easy stage but it is only going to get worse. I have seen people in the later stages and it has frightened the life out of me.

Dad is not likely to reach that stage because of his cancer and that is also scary but I find the cancer easier to deal with than the dementia at the moment.

 

[kindred]

I was not asking for graphic images to be posted in the media but lets have some honesty about dementia.
This should start with the initial diagnosis, I had no experience of the illness, I had never seen it before my husband developed it. I was just left to get on with it without any knowledge of what to expect.
Social services and local Carer groups were of no help at all, the G.P. did not want to know he just told me to call an ambulance when my husband was being psychotic and violent.
Surely the Memory Clinic should give advice and help otherwise where do you go? In my case I was told my husband had mixed dementia and virtually on you bike pal and sort it out for yourself.
So as far as I am concerned don't sugar coat things with smiley faces and silly slogans, you don't have to portray the horror a lot of us go through, but at least be honest about what we may experience and most of all what support there is for us. Still a one word answers that - NONE.

I am struggling with a dilemma. As you know, I want this terrible situation realistically portrayed and have tried when I wrote to the Times, believe me I was in your face forthright. The other side is the awful effect on our mental health of living in the dark side. Again, as you probably know, I am a psychotherapist although I work with the young who are a different kettle of fish.
In other words, confronting the hell of the existence is what we need to do to get action, but this will have a difficult effect on our own mental health. This is partly why the think positively philosophy is prevalent. I know, I know, it is difficult to think positively about this situation but what I am saying is that it is difficult for us always to live in the hellish reality in our minds ... Help me out here guys, tell me you understand some of this. I feel equipped to put this point of view only because my experience was so dreadful. Kindred.

 

[kindred]

is it me or has this thread been moved? Gxx