Suffering with dementia, the other side of 'living well'
- Thread starter Murper1
- Start date
Thank goodness someone has realised. They now need to convince the rest of the dementia world!
I think one of the problems is reactions of pwd vary according to the stage of the disease, as well as being very individual anyway. OH coped very well in the early stages, but as it progressed, no. He developed what I call a 'mulish' look, which said, I'm only doing this cos I have to/ you want me to. I don't actually like it and I don't really want to be here.
And there is no way he could be said to be living well with dementia for the last 2-3 years of his life. Other illnesses had their part in this, and I'm ignoring the hallucinations and delusions!
I think one of the problems is reactions of pwd vary according to the stage of the disease, as well as being very individual anyway. OH coped very well in the early stages, but as it progressed, no. He developed what I call a 'mulish' look, which said, I'm only doing this cos I have to/ you want me to. I don't actually like it and I don't really want to be here.
And there is no way he could be said to be living well with dementia for the last 2-3 years of his life. Other illnesses had their part in this, and I'm ignoring the hallucinations and delusions!
I have already taken issue with the Alzheimer Society here about this whole issue. The only image of dementia presented in media and advertising here, or in talks etc is the very positive Living Well With Dementia model. It's driving those, like my late husband, who really suffered from dementia, and their carers, into some sort of stigmatized underground. Only speak in whispers of the horrors of hallucinations, paranoia, violence, aggression and incontinence. Of violent refusal of personal care, of sleepless nights, of carers literally going for weeks without getting enough time alone to take a shower. I'm brooding on it Spamar! Sugar-coating something nasty may make it easier to swallow, but it doesn't change it into something nice.
Sent from my Moto G Play using Talking Point mobile app
Sent from my Moto G Play using Talking Point mobile app
Alzheimers Australia does a similar thing. At an expo, they presented quite a few short videos of PWD so called "Living Well" and the people they showed looked happy BUT they didn't seem to relate to the experiences of everyone else.
OH to others appears to be perfectly happy but they don't see his paranoia and his agitation nor do they see his fear. His mother had AD and he knows what she was like and it is horrifying to him that he could end up like she did. And that is a fear that is so deep seated that nothing can dispel it. Try living with sword of Damocles hanging over your head and see how it effects your life.
OH to others appears to be perfectly happy but they don't see his paranoia and his agitation nor do they see his fear. His mother had AD and he knows what she was like and it is horrifying to him that he could end up like she did. And that is a fear that is so deep seated that nothing can dispel it. Try living with sword of Damocles hanging over your head and see how it effects your life.
I have become convinced that the image of dementia as lovable old folk with dodgy memories can only be changed by actual experience. The truth is too unbelievable. Infrequent visiting doesn’t do it, the PWD is quite capable of going into hostess mode. Until you have been forced by the situation to provide what is delicately called ‘personal care’ to a much loved relative with dementia, who is determined to prevent you by whatever means; you will not believe. You walk a tightrope and falls are commonplace. Try and tell people how it really is and see their eyes glaze over. I don't do it anymore.
Few people, if any, live well with dementia.
Few people, if any, live well with dementia.
Livi
I wonder if the 'Living Well' tag gives an impression that dementia is OK and certainly very liveable with? Plus the smiley looking, huggy images that are used.
My Dad recently died of cancer, all info I saw had sections about 'Living with cancer etc". which was factual and helpful but not sugar coated.
If we make dementia sound and look OK do we minimize its seriousness?
Do we prop up the idea that everyone can just get on with it and that it's not too bad?
As my Mums carer I find that the 'Living Well' tag makes me feel like a failure. Here my Mum is with this awful, heartbreaking disease; there are fewer and fewer times when we can share a warm smile and shared moment as Mum loses memory, empathy and understanding. It doesn't feel like any sort of 'Living Well' to me.
I wonder if the 'Living Well' tag gives an impression that dementia is OK and certainly very liveable with? Plus the smiley looking, huggy images that are used.
My Dad recently died of cancer, all info I saw had sections about 'Living with cancer etc". which was factual and helpful but not sugar coated.
If we make dementia sound and look OK do we minimize its seriousness?
Do we prop up the idea that everyone can just get on with it and that it's not too bad?
As my Mums carer I find that the 'Living Well' tag makes me feel like a failure. Here my Mum is with this awful, heartbreaking disease; there are fewer and fewer times when we can share a warm smile and shared moment as Mum loses memory, empathy and understanding. It doesn't feel like any sort of 'Living Well' to me.
I agree with everything posters have said.
The idea of 'living well' with anything from late moderate to late advanced severe stage is anything but 'well'.
It would take it to rain sugar all day to give enough of a 'sugar-coating' and then it would just be a 'sugar statue' of the realistic horror of what dementia really is for many- a living horror movie.
The idea of 'living well' with anything from late moderate to late advanced severe stage is anything but 'well'.
It would take it to rain sugar all day to give enough of a 'sugar-coating' and then it would just be a 'sugar statue' of the realistic horror of what dementia really is for many- a living horror movie.
Last edited:
I'm devastated by this thread, and the article it comes from. Does it mean that all the activities I've been involved with to help make life better for PWD and their carers are a waste of time? Does it mean that some people with the disease are so badly affected that we might as well not bother to give them some pleasure, through Singing for the Brain, art or other events? Does it mean that helping and encouraging the general public who have no direct knowledge of dementia to be considerate, patient and helpful to PWD is pointless because they don't see how terrible things can be?
I'm not blind to the effects on families of these diseases, but I also had felt, up to now, that my efforts had some point. Now I'm not so sure.
No, absolutely not!
I don't think anyone is saying that all those positives aren't good and positive initiatives in the 'early to moderate stages'. For some people.
Some sufferers are unable 'to live well' due to paranoia / delusions etc. Some family members have to cope with these on a daily basis and they 'don't live well' either.
Yes we do need understanding so people understand why someone is looking around at their surroundings, unable to remember where they are or how to get home. We do need people to see how they can help people in the early stages feel better about themselves, when they are in the early stages and acutely aware of their failings.
What others of us are referring to is the other side of 'dementia' - the 'raw horror'.
Surely it's a question of balance? You'll find many examples on TP of people at various stages 'living well' and you'll also find examples of the full horror that many PWD have to endure.
There's nothing wrong, I think, in trying to be as positive as we can in any given situation and a lot to be gained if we can. One example: it's true that all kinds of horrific things can happen to PWD. That doesn't mean that everyone with dementia will experience them. But like everyone else who actually has the 'hands on' experience, I sometimes get very angry at the 'sugar coating' that goes on.
There's nothing wrong, I think, in trying to be as positive as we can in any given situation and a lot to be gained if we can. One example: it's true that all kinds of horrific things can happen to PWD. That doesn't mean that everyone with dementia will experience them. But like everyone else who actually has the 'hands on' experience, I sometimes get very angry at the 'sugar coating' that goes on.
No- that would be missing the point. The point, and my own issue with the usual media presentation and the whole concept of the "Living Well With Dementia" campaign is not that it's wrong or void in itself. There are people on this forum who are living well with dementia at the moment. People should continue to live as well and as independently as possible for as long as possible.
The problem is that the campaign is only presenting one small image of living with dementia. I feel that only presenting this positive side is quite dismissive of the suffering of people like my husband, who from long before he was diagnosed, did NOT live well with dementia, and completely dismissive of the toll caring full time for someone whose particular dementia journey comes with, for example, aggression and/or violence takes on carers.
Over here, the Living Well campaign seems to be taken up nicely by the Government's talk about how"care in the home" should be preferable to nursing home care where possible, and that elderly people should have the right to remain in their own home if they wish - accompanied by vague talk of "increased funds for Home Care packages". Been here before! What happens is that nursing home beds are cut - and then home care funding is cut too! And family carers are supposed to just keep going- because, after all, the ads show gently smiling elderly people, looking lovingly at their carer, who is smiling lovingly back. Why would they need help?!
Finnster, I'm not at all denigrating the activities- I wish there was more available around here. Singing for the brain, etc. are very beneficial. My husband refused to attend or take part in anything. Some people are just like that.
Sent from my Moto G Play using Talking Point mobile app
I've belonged to this forum for a long while, and have learnt a lot from its contributors. I don't comment myself simply because I don't have their knowledge and expertise, and do not personally care for a PWD. I did however feel strongly enough to respond to this. I'll go back to just reading and learning. But I do hope that the sentiments expressed so strongly here and in the article don't lead to the ending of Alzheimer's Society initiatives which I think have done nothing but good.
Last edited by a moderator:
Exchange of ideas and opinions is always helpful, Finnster. Who knows, maybe the Alzheimer's Society will be inspired to come up with some initiatives to help those who cannot live well with dementia? Because I think keeping this not so nice fact in the politicians faces is crucial.
Sent from my Moto G Play using Talking Point mobile app
Sent from my Moto G Play using Talking Point mobile app
The >>>Full editorial<<< is worth a read.
Conclusion
The current policy emphasis on “living well with dementia” is welcome and long overdue, but it denies suffering. Furthermore, it implies that no further thinking or resourcing is required because all we need to do is aspire or hope for people to “live well” with dementia. Insights from the sociology of suffering literature remind us that all illnesses inevitably involve suffering, and that we must work towards recognizing, understanding, and alleviating this.
Conclusion
The current policy emphasis on “living well with dementia” is welcome and long overdue, but it denies suffering. Furthermore, it implies that no further thinking or resourcing is required because all we need to do is aspire or hope for people to “live well” with dementia. Insights from the sociology of suffering literature remind us that all illnesses inevitably involve suffering, and that we must work towards recognizing, understanding, and alleviating this.
Hi Finnster,
And no, all those activities you have been involved haven't been a waste of time. It's important that PWD have the opportunity to be involved in various activities while they can and for as long as they can and while it is proving to be of some benefit.
But for some, they will forget about it as soon as they walk out the door, others go under protest because they don't want to be there in the first place and for some it's the only way their carers can get a break. It also is only a small part of the rest of their lives.
OH loves playing bridge and really looks forward to it but I could not for one moment say that he is living well. And when he can no longer play, what then? More agitation and paranoia and what else? Maybe some of his fear will have gone and that may well be the only blessing.
And no, all those activities you have been involved haven't been a waste of time. It's important that PWD have the opportunity to be involved in various activities while they can and for as long as they can and while it is proving to be of some benefit.
But for some, they will forget about it as soon as they walk out the door, others go under protest because they don't want to be there in the first place and for some it's the only way their carers can get a break. It also is only a small part of the rest of their lives.
OH loves playing bridge and really looks forward to it but I could not for one moment say that he is living well. And when he can no longer play, what then? More agitation and paranoia and what else? Maybe some of his fear will have gone and that may well be the only blessing.
All the efforts to improve the quality of life for pwds have a point and I really appreciate those efforts because I have seen the effects. But it's not a straight line.
My late father was in an EMI home because he needed that level of care. His quality of life was abysmal, he fought, he ranted and cursed it was like a nonstop torture for him. But the home never stopped trying right up to the end when he was bedridden and they built a bird table outside his bedroom window. I loved them for that.
But the point of the article is a good and strong point. The public model of dementia is like Dementia-Lite and it too conveniently enables a political evasion of the worst kind. And that evasion has a massive impact on the lives of everyone involved.
Dementia strips away personhood and is devastating and how we deal with it is, I believe, the measure of what kind of society we are. And we don't deal with it well if we avoid confronting the harsh reality that many people with dementia suffer in the most horrific ways.
Look at how 'care in the community' facilitated the dreadful cuts to mental health care and we're heading the same way with both dementia care and now in the UK with physical health care too. Read the wording of the latest Sustainability and Transformation Plans and how they transpose health care to home care.... Who exactly is going to provide this 'care' and how?
We have a rising political manoeuvre that's trying to pit generations against each other, slowly drip feeding the ideas into the news media of 'intergenerational fairness' for political ends.
We have a potentially catastrophic undermining of the idea that health care is a fundamental right, free at the point of delivery. We're sliding inexorably towards massive change and in terms of dementia care it's not looking good.
If we don't hold those in power to account not only will there be no improvement but the situation for people with dementia and their carers will decay. The article is right. How can we alleviate suffering if we don't acknowledge its presence?
We must never stop bothering no matter what......
