Are we all missing something?

zeeeb

Registered User
I haven't read the responses, but my opinion of it is.

that people are set in their ways, when asked how are you, we say good thanks, even when we are not. especially to strangers or people who aren't really close.

that we are set in our ways in that we really don't like to admit defeat or ask for help (except from those who are the very closest few).

and that when seeing people who don't know us inside out, alzheimers sufferers tend to put all their energy and focus into that 10 minute conversation or that 20 minute dr appointment so that we appear to be functioning, and that is all the energy that they can muster, they'll likely need to go have a nap for a couple of hours after all that energy on that short period where they have appeared to be "not so bad".
 

Charlyparly

Registered User
Nov 26, 2006
217
0
Lancashire
Can’t tell you how often I’ve found folk battling it out and going hell for leather with a loved one because they won’t do a simple task or are generally being obstinate and creating.

One lady was tearing her hair out because her husband was flatly refusing to change his socks one morning when I got there and I could hear them rowing from outside the front door. I made the suggestion she just leave the bathroom and I’d see if I could get him to change. “Shall we get your socks changed and then you’re done and dusted and can come out with me?” He changed them straight away without argument and God bless her, his poor wife burst into tears of frustration and said “Why will he do that for you and not me? You’re a total stranger and yet you can get more out of him than I can?” :(
My answer was the same as it usually is – in that it’s because I’m a stranger.

There’s a tendency to not give a monkey’s cuss about what we do in front of our loved ones when irritated but we all snap out things and do that “chirpy cheery smile and hello!” when someone we don’t’ know that well shows up mid-shouting match. I think that reaction and tendency to put on a front for outsiders is much deeper within us than we’d imagine.:D

With regards to professionals not always taking these things into account, this is a real source of frustration from my side of the fence as a care manager. I’ve known social workers and GP’s come to the home to assess someone with considerable difficulties that make them unsafe and unable to manage at home. They might spend ten minutes chatting with the person, not ask staff for any info, read our care plans, notes or speak to me or family members – and then start making arrangements for their return home with a minimal care support package in place because they don’t feel 24hr care is warranted. :eek:
 

small

Registered User
Jul 6, 2010
110
0
harrow
Reading all the above about the professionals, alhough I think there are good and bad as in any walk of life, there's always the question of time & resources. The infrastructure and money aren't there to pay for the amount of care thats needed to help the carers out. So its easier and less time consuming to gloss over the situation and say no extra care, help etc is needed.

I find myself being pushed from pillar to post by the professionals trying to get another "arm" of the medical or social services to give the help I need because they can't help me though they can see I'm sinking.

Sometimes. like this morning for instance, I truly feel like walking out and leaving them to it!!!

Jackie
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
I'm very grateful for so many interesting responses.

My original point was that we may be missing something. I think we are. The most likely explanation for this phenomenon, on which there seems to be general agreement, calls for us to believe that people with dementia, often quite advanced, have the ability to consciously decide how they will react to different classes of people and then to proceed to behave relatively normally, albeit for a short time.

If this is the case (and we're not talking about the 'I'm fine' response dealt with in the original post) then is this not telling us something about the disease that we do not seem to see in many if any other situations? This is, that the behaviour of a person with dementia, is in certain circumstances, under their own control.

To me, that's incredibly interesting. Even exciting.
 

Witzend

Registered User
Aug 29, 2007
4,283
0
SW London
I’ve known social workers and GP’s come to the home to assess someone with considerable difficulties that make them unsafe and unable to manage at home. They might spend ten minutes chatting with the person, not ask staff for any info, read our care plans, notes or speak to me or family members – and then start making arrangements for their return home with a minimal care support package in place because they don’t feel 24hr care is warranted. :eek:

Is that because (like most people who've never had to cope with it) they simply haven't a clue about dementia? They don't realize that someone who says they're fine, can manage all their shopping/cooking/cleaning etc. maybe hasn't been capable of doing any of these for a long time? And very likely won't even wash without a lot of prompting?
Or is it just for the sake of expediency/cost cutting?
 

LadyA

Registered User
Oct 19, 2009
13,730
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Ireland
Is that because (like most people who've never had to cope with it) they simply haven't a clue about dementia? They don't realize that someone who says they're fine, can manage all their shopping/cooking/cleaning etc. maybe hasn't been capable of doing any of these for a long time? And very likely won't even wash without a lot of prompting?
Or is it just for the sake of expediency/cost cutting?

Oh, that doesn't just happen with dementia sufferers. When my dad was dying with leukaemia, at one stage he was in hospital suffering pneumonia. The hospital was crowded, and he was in a side-ward, on an antibiotic drip. A "bed manager" waltzes in, consults her clip-board, smiles broadly and says "Now, Mr. C., you can go home!" and was about to waltz back out having discharged him - but thankfully my mother was there, and was after her like a rottweiler! :D
 

SueShell

Registered User
Sep 13, 2012
395
0
Orpington
I keep reading on here about people with dementia who drive their family carers up the wall yet, when faced with professionals, are able to switch immediately and present as people who don't really have any serious problems.

Now my wife would probably answer 'fine' if asked by a professional how she was, but it would very quickly become clear that this was just a stock response. As I understand it, these people are much more convincing and professionals often seem to be fooled into thinking that family members are grossly exaggerating the difficulties. At least that's what is reported on the threads and there are always other people who quickly come along with similar reports from their own experience.

This is clearly incredibly frustrating for carers who are trying to get support.

But are we missing something here? If people with dementia are capable of this change in presentation, what else might they be capable of? Could they possibly be persuaded to try and 'switch' more often, to the benefit of their carers, and themselves?

I can anticipate the response: It's just a random result of their brains being damaged. But that doesn't really begin to explain the phenomenon does it?

Correct StanleyPJ! When the PN and PD came home to see my Mum, Mum said she was absolutely fine physically apart from being tired all the time. Within 15 minutes of their departure she was back into her nightgown in bed telling me she feels so ill and was dying. I said to Mum if you feel so ill why did you tell the Doctor you felt fine because it makes me look like a liar? She said she felt OK then but feels ill now. Sorry, I don't buy that. She may have Altz but she can still play me off. She's leading up to her dying swan act at the moment, just becaus I'll be having my first respite break in 18 months. Yes, I do shed tears for her and of course I'm very sympathetic, but I've hardered up quite a bit the last few weeks, purely for my own health's sake being her only carer. She keeps saying she wants to go in a home but when SS arranged for her to go to a week's respite care home she went ballistic and refused to go so I had to cancel it. When I said to her what's the difference she wouldn't answer my question. As my Mum has always been very manipulative pre Alz she obviously still keeps these traits now she has Alz. Sue
 

winda

Registered User
Oct 17, 2011
2,037
0
Nottinghamshire
My husband used to be the same. After complaining to me about something he would tell others that he was fine. Once, I told a nurse at the hospital that my husband's back was hurting after he had told me many times. As usual when the nurse went to speak to him about it, he said that his back was fine. As she turned to go, she heard him say to me that his back was hurting. She then was able to give him some painkillers.

I have spoken to his consultant about this and he said that it was a matter of showing a 'public face'. Also from my experience with my MIL who had dementia over 20 years ago, I think that many of their responses are simply the ones they have always used. I don't think much, if any, thought goes into it.

It is very interesting.
 

jtc

Registered User
Mar 11, 2008
11
0
wales
My husband used to be the same. After complaining to me about something he would tell others that he was fine. Once, I told a nurse at the hospital that my husband's back was hurting after he had told me many times. As usual when the nurse went to speak to him about it, he said that his back was fine. As she turned to go, she heard him say to me that his back was hurting. She then was able to give him some painkillers.

I have spoken to his consultant about this and he said that it was a matter of showing a 'public face'. Also from my experience with my MIL who had dementia over 20 years ago, I think that many of their responses are simply the ones they have always used. I don't think much, if any, thought goes into it.

It is very interesting.
I visit a lot of people who live with dementia.. I find they say; they tend to act stupid because its easier that way...some people living with dementia say they are not given time to answer questions...the world is too quick...people do not have the time to wait for an answer....
This is especially true with the ''professionals''
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
Another thought: this may explain my husband's twist on this: he is divesting himself of me and so only giving me his public face, more and more. It is as if the public face is the only face. He does not often speak with me or be with me.

Maybe he only has his public face now, even with me.

May be it his way of controlling his illness even with me. Maybe trying to protect me. I think he has thought about this. Though much may also be instinctive.
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
Butter, thanks for sharing such a keen, if upsetting, perception. Nice that you are prepared to consider that he can, at least in some ways, think and then act upon his thought.

But I can see how sad your analysis will make you feel.
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
O.K. - I'll have another try......

I said in the original post that I'm interested in the phenomenon of people with dementia who are apparently able to convince professionals that their problems are much less serious than their carers know and say they are. I tried to make it clear that I was distinguishing this from the almost automatic 'I'm fine' type of response to the question 'How are you?' which will not convince a professional if only because it is usually very brief whereas some people, it would seem, are able to maintain this 'public front' long enough to 'fool' the professional. (It's also been noted that the 'public front' is also sometimes evident when the person concerned is not a professional, but someone else that the person with dementia has been introduced to.)

I have read about the phenomenon on Talking Point. I do not have direct experience of it, though I do have (see my blog) 24/7/12/365 experience of caring for my wife who has dementia.

I am asking the question: How is this possible? I am familiar with the concept of the brain's 'hardwiring', the idea that certain skills and abilities are 'built in' and survive much longer than others. But I'm not willing to accept that a respect for authority can be hard-wired, which is what some people seem to be suggesting (and this wouldn't in any case cover the 'normal' conversations with people not in a position of authority).

My tentative conclusion is that this phenomenon must involve some decision or effort by the person with dementia to act in one way or in another way depending on how they have judged the relationship with the person they are talking to. So, as someone suggested, "This is a family member, so I can 'relax' '' might be the decision.

I'm wondering if this 'ability' which people seem to have identified could have wider implications.

If I'm wrong in my explanation, I'm interested in alternative explanations.

I haven't yet read any that have convinced me. Mostly, it's a version of the familiar circular argument as in:

'Why does the person with dementia do this?'

'Because they have dementia.'
 
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Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
Survival

I think it is basic: it is about survival. We are bred and conditioned and programmed and educated and selected (naturally) to survive.

I am not a scientist but a good biologist could explain it. We see/understand people as threats to our safety if they are unfamiliar or in positions of authority. Good manners and a public face are weapons with which we can deal with the threats. Our nearest and dearest, if we can trust them, are less of a threat so the skill of managing them is less important to our survival. We can let that skill die, more safely.

As we fight to survive our options narrow. We get more desperate. We focus on what we think (feel/sense) is essential.

My husband (thank you for your kindness in your reply) feels safer in the company of strangers. He thinks they do not know that he is fighting for life. And, indeed, he is right, much of the time.
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
Many thanks for your reply which offers a a plausible explanation of why this might be happening.

I still don't really understand how it can be happening without the person exercising a kind of - I don't want to use the word 'conscious' - sophisticated ability which is, to me at least, impressive and maybe worthy of more examination.
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
The will is very powerful - I understand it as part of the survival instinct. I think some people (scientists) understand all thought/emotion as the result of a chemical reaction.

When my mother died this year, I observed her 'deciding' to die. She had a very strong will to live - until she decided to die. And then her will was very efficient too. I think 'will' is a good word. I wonder what it is - and what it's roots are - in other languages.

PS I know all thought/emotion can be observed now as a reaction in the brain - which is why brain surgery is done with a conscious patient who can follow instructions
 

nicoise

Registered User
Jun 29, 2010
1,806
0
Perhaps there is a biological reaction, based on that survival instinct - perhaps triggered by adrenaline - which forces the brain into action?

In the way that an injured person can not feel the pain of a physical injury in order to get themselves away from a dangerous situation, through adrenaline overriding the pain receptors; or a person in shock can deal with a threatening or upsetting situation and not feel the shock and emotion until the situation is passed.

From Psychology Today - Threat Management:

Adrenaline created by an abrupt blast of stress sends a flood of oxygen-rich red blood cells through your body, boosts your immune system, and signals your brain to start releasing painkilling dopamine and endorphins.

Perhaps for people with dementia, it is not so much the physical fight for survival, but the mental fight to keep some control.
 
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winda

Registered User
Oct 17, 2011
2,037
0
Nottinghamshire
Perhaps there is a biological reaction, based on that survival instinct - perhaps triggered by adrenaline - which forces the brain into action?

In the way that an injured person can not feel the pain of a physical injury in order to get themselves away from a dangerous situation, through adrenaline overriding the pain receptors; or a person in shock can deal with a threatening or upsetting situation and not feel the shock and emotion until the situation is passed.

From Psychology Today - Threat Management:



Perhaps for people with dementia, it is not so much the physical fight for survival, but the mental fight to keep some control.

This could definitely explain what happened when the professionals arrived at our home to have my husband taken into hospital earlier in the year when he was behaving very aggressively.
After weeks of hardly being able to walk due to his back hurting, he decided to go for a walk to get away from everyone. The SW followed him for a while but couldn't keep up. When my husband didn't return after about 30 mins I phoned his son to discover that he had just arrived there.
The adrenaline argument would follow here as would the need to keep some control.
 

Padraig

Registered User
Dec 10, 2009
1,037
0
Hereford
In answer to the question: yes: we will always be missing something in the jigsaw of life and more especially when it comes to AD.
One's early conditioning determines one's outlook on life. Some will be familiar with the saying: "Give me the child till he's seven and I'll show you the man". In genera,l people are educated along the same lines,take the same exams and are guided by parents and adults to conform with-in socially accepted boundaries. Learning continues thorough out life and much of what we miss we only learn through life experience.
One cannot learn what it feels like both mentally and physically to be seventy or eighty years old, until you attain that age. One cannot know what real loneliness is at any age until they experience it. How can we know the fears of the lonely elderly in today's society without personal experience?
How much more fearful and frustrating it must be for those with AD to communicate in today's world? Listen, learn and share in their world of a time passed.
The most painful experiences can be the most wonderful blessings.
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
Picking up what nicoise and winda said - I wonder if there is any line between physical and mental survival instincts? Aren't they all linked?
 

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