A less sugar coated view of dementia

jugglingmum

Registered User
Jan 5, 2014
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Chester
I didn't have time to read all the comments on the Barbara Winsor thread, but I do find the 'living well' with dementia tag line hard to swallow - this story gives a more warts and all view - and was given a high billing on the BBC news page this morning

Although not all PWD exhibit the violence mentioned, many of the other snippets of life mentioned are classic of behaviours which are hard to deal with when on the coal face. Seems to be linked to a book.

http://www.bbc.co.uk/news/stories-44109878
 

Grannie G

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Apr 3, 2006
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Kent
I think those of us who have struggled with aggression, fear and challenges find the concept of living well with dementia very hard to swallow. It`s as if people who haven`t had our experiences are offering platitudes to help make dementia less fearful.

I accept there are people who may live well with dementia but this phrase is in danger of making people like me and possibly you @jugglingmum feel inadequate and we have handled things badly.

Quite frankly all these `sayings` make me bristle. They imply one size suits all when it really doesn`t.
 

love.dad.but..

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Jan 16, 2014
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Kent
I also don't like the generalisation that people use in saying you can live well with dementia as though a person can choose to live well. Good for those who do but dad didn't and many others don't.

Barbara Windsor's OH has raised awareness which can only be a good thing but it struck me that he..in using the word I heard no longer wants to 'hide' the illness ... reinforces the stigma some pwd or families still feel
 

Hazara8

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Apr 6, 2015
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I didn't have time to read all the comments on the Barbara Winsor thread, but I do find the 'living well' with dementia tag line hard to swallow - this story gives a more warts and all view - and was given a high billing on the BBC news page this morning

Although not all PWD exhibit the violence mentioned, many of the other snippets of life mentioned are classic of behaviours which are hard to deal with when on the coal face. Seems to be linked to a book.

http://www.bbc.co.uk/news/stories-44109878
Yes. There is a general perception with regard to 'living well' in relation to dementia, which can be rather selective. Many do carry on for some time, managing and managing quite well, with assistance and the progression varies. But for the majority of carers, especially sole carers, the quite dramatic events which one reads about here (BBC news page) are sadly not uncommon and some are frankly extraordinarily traumatic for all concerned. The many new posts that arrive on TP are testimony to the fact that dementia comes, for perhaps everyone, as a genuine eye-opener if not a shock to the system and the presentations which are varied and mostly inevitable, even moreso. The one-time classic view of 'grannie's lost her marbles' which was borne out of ignorance and a modicum of affectionate humour, has thank heaven had its day. But there remains a need to 'educate' folk to the very real and tangible behaviours which stem from a brain afflicted with dementia and I think that you point to that need in a timely manner.
 

LadyA

Registered User
Oct 19, 2009
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Ireland
@Grannie G I'm afraid I'm a bit more cynical than you! I think it's more than just offering platitudes to allay their own fears. I think it's a way of getting around to more and more cuts to supports and services for those with dementia. After all, if everyone can and should "live well with dementia" , then good luck to them - they don't need support and/or care services then, do they?
 

Philbo

Registered User
Feb 28, 2017
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Kent
The thing I find more irritating is the commonly used mantra of "seek an early diagnosis, so you can get the help you deserve" - as used in the adverts when my wife was first diagnosed!:mad:

Yeah right!
 

Ann Mac

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Oct 17, 2013
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It's good to see that less sugar coated version, JM - thanks for sharing that x

I haven't actually come across anyone who has had, or is having, experience of dementia who feels that the 'living well' tag is appropriate, or even accurate. It's time it was dropped completely, because although it may have been coined with the best of intentions, its actually done more harm than good. It misleads those who have no experience, so does nothing to raise awareness of the reality of the illness. For those that are starting on the journey of caring, it implies (as love.dad.but.. says) that you can 'choose' to live well with the illness, that there are ways of acheiving this - and we all know that isn't true in a huge number of instances. For those that are in the thick of caring, its quite frankly offensive.

@Grannie G I'm afraid I'm a bit more cynical than you! I think it's more than just offering platitudes to allay their own fears. I think it's a way of getting around to more and more cuts to supports and services for those with dementia. After all, if everyone can and should "live well with dementia" , then good luck to them - they don't need support and/or care services then, do they?

I'm cynical too, LadyA - because I believe the same.
 

nae sporran

Registered User
Oct 29, 2014
9,213
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Bristol
I think the first couple of years after diagnosis we lived well enough, three years ago we got out on many day trips and had a decent life despite dementia. More recently, we have been surviving. So, I'm not too keen on the phrase either and I suppose the first couple of sentences sum up the kind of deterioration which takes the choices out of our hands.
 

Bunpoots

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Apr 1, 2016
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Nottinghamshire
In 2008 I read a report on the front page of our local paper saying that a local man had murdered his wife. I remember exactly where I was and who I was with when I read this. Why? Because the man involved was married to a childhood friend of my aunts, who showed me the report and said "is that.. .?"

The man's daughter is a friend of mine from school. She has still not come to terms with it.

Her dad had dementia. It took away the lovely gentle father she knew, as well as her mother, on that day.

How is that living well with dementia?
 

70smand

Registered User
Dec 4, 2011
269
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Essex
Only last night I was discussing this with my mum. She told me she didn’t let on how difficult living with my dad was for years because she didn’t want me to think bad of my dad, or cloud her grandchildren’s view of him. She said that he had always been such a good husband and dad that she would stick by him and look after him no matter what and she didn’t want to burden me as I had my own family to look after. In the end it came to a point where I really thought that if I didn’t get some help for them other than me one of them would end up killing the other.
Even now dad is further down the line with his Alzheimer’s in a care home and all the love has come flooding back between them mum doesn’t like to tell people how bad he really was because she doesn’t want him remembered that way.
 

LadyA

Registered User
Oct 19, 2009
13,730
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Ireland
And yet, it's all we hear about here. That, and the "right" that elderly people have to live out their lives in their own homes if they want to. And that's all well and good, but Home Care Supports have been decimated here, and unless you can afford the costs of, when I checked four years ago, €24 per hour, then how are elderly people on small pensions to be cared for? I'm pretty sure that the next push here is going to be legislation to allow for euthanasia. There are already articles starting to appear on the inhumanity and cruelty of this person's being allowed to linger on in pain, and then very positive and encouraging articles about those like that scientist last week, who went to Switzerland for assisted suicide (but noting how sad it was, that he had to make that journey, away from his home.). I think the public will be very, very slowly softened up to the idea, but as much as I hate that people do often linger on, personally, I think there are way too many pitfalls. Too much danger of vulnerable people feeling under subtle pressure to end their lives because of economic reasons. Because their care is costing too much, their families can't afford it, they are using up their children's inheritance, they are costing the State too much.
 

Georgina63

Registered User
Aug 11, 2014
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I agree with so much of what's been said above.
Apologies for the gallows humour but perhaps there was a typo in the original tag line and it should read 'Living HELL with dementia?'.
Although there have been periods or moments of contentment for my folks, that is certainly far from the truth for a lot of the time, let alone the impact of their dementia on immediate family.
I've recently been looking over some of the stats that compare dementia research with that of cancer and there are over four cancer researchers for every one dementia researcher .
 

Georgina63

Registered User
Aug 11, 2014
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0
I didn't have time to read all the comments on the Barbara Winsor thread, but I do find the 'living well' with dementia tag line hard to swallow - this story gives a more warts and all view - and was given a high billing on the BBC news page this morning

Although not all PWD exhibit the violence mentioned, many of the other snippets of life mentioned are classic of behaviours which are hard to deal with when on the coal face. Seems to be linked to a book.

http://www.bbc.co.uk/news/stories-44109878

There was a link to an interesting radio interview with Robyn Hollingworth (her book is My Mad Dad, the diary of an unravelling mind) if you listen from about 45 minutes in https://www.bbc.co.uk/programmes/b09zt3v9. Gx
 

Andrew_McP

Registered User
Mar 2, 2016
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South Northwest
'Living HELL with dementia?'
Nice twist, I approve. :)

I especially approved of it yesterday after four hours cleaning Mum, the bathroom, and most of the carpets. It was a bad day at the office. On the bright side, it's good drying weather... which is just as well, because my attempts to resurrect the conservatory aren't going well. Mum objects to any noise and the last time I poked my screwdriver through some paintwork a slug crawled out.

Now, I'm no structural expect, but I don't think slugs are as good as wood for holding up conservatory roofs. Snails would be much better.
 

Loopiloo

Registered User
May 10, 2010
6,117
0
Scotland
The thing I find more irritating is the commonly used mantra of "seek an early diagnosis, so you can get the help you deserve" - as used in the adverts when my wife was first diagnosed!

Yeah right!
How I hate that one. So many people said that to me (husband refused to see GP) - nurses, doctors, other health professionals - and I really did believe "You will get help at the memory clinic". Huh! :mad:

We twice attended the memory clinic, first for the initial consultation then after some considerable time following the brain scan, for the result. Vascular dementia. We were told " go away and learn everything about dementia and prepare yourselves." Learn everything...? how, where, from whom... o_O Help! :confused:

I read everything I could about dementia - books, online - while struggling alone mainly trial and error, knowing no one with dementia. This was 4 years before I stumbled upon Talking Point.

As I have said since I joined Talking point 8 years ago, and read and read and eventually wrote, I felt I had come out of a deep darkness into the light. It was an education on every level.

I agree with so much written here. Thanks @jugglingmum and @canary for the links. I still have to click on the link from @Georgina63.

Loo xx
 
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Georgina63

Registered User
Aug 11, 2014
973
0
Nice twist, I approve. :)

I especially approved of it yesterday after four hours cleaning Mum, the bathroom, and most of the carpets. It was a bad day at the office. On the bright side, it's good drying weather... which is just as well, because my attempts to resurrect the conservatory aren't going well. Mum objects to any noise and the last time I poked my screwdriver through some paintwork a slug crawled out.

Now, I'm no structural expect, but I don't think slugs are as good as wood for holding up conservatory roofs. Snails would be much better.
Sorry about the bad day at the office. I remember a tsunami situation with the bathroom and carpets at my parents' house.
I agree that snails probably have more relevant experience than slugs.....