• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Devious?

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Friday is John's daycare day, referred to as his 'club'.

Last week I had a terrible time getting him there. He kept asking where he was going. I know he has difficulty understanding what's said to him, so I tried very way I could to get through to him. But he kept coming back with 'why won't you tell me where I'm going?'. In the end I just had to say, 'You'll just have to get in the car and wait and see'. He was in a foul mood, and apparently gave them trouble while he was there.

This week I've been feeling really rough -- infection, don't ask! I felt so bad yesterday I went to bed for a couple of hours in the afternoon. Didn't get much rest, he kept coming up to see if I was OK, but it seems to have had an effect!

This morning John asked what we were doing, and I told him he was going to his club. He pulled a face, and I said 'Don't give me a hard time this week, I can't take it.' He said 'All right, I'll go'.

So I've come to the conclusion last week's performance was a wind-up. And I would have said John hadn't a devious bone in his body!

Perhaps I should be ill more often!
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Hazel

a wind-up
IMHO more likely he is just testing the boundaries of his world at a time when he felt vulnerable. The mists of dementia seem to drift erratically and sometimes he may just need to ask for more information than normal from his beacon - YOU.

I never subscribe to the opinion that people who have dementia actively try to wind others up. I could be totally wrong of course.

I believe they are simply getting their bearings in a world gone strange - but since their faculties are compromised, they may have to do so in ways that may seem perverse to us.

Glad to hear the mists rolled away this week.....
 

mel

Registered User
Apr 30, 2006
1,656
62
Sheffield
Hi Hazel
it reminds me of a child really....testing the boundaries?
i felt at times mum was deliberately winding me up.......and at those times I just had to get tough!!
going to the doctors was always fun.....usually as we pulled up outside "well I'm not going there!!!" Oh dear.....one thing I became was very devoius myself!!!
Telling fibs, cajoliing,bribery!!!
Hope you're feeling better now
Love Wendy xx
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Nada said:
Could it be the other way round? That when he knew you were ill he put you first rather than his own feelings?

Just a thought.
Oh Nada, I'd love to think so. That would make it all worth while. One of the things we all miss most is the expression of love and affection. I'll hang on to that thought.

And yes, I remember Sylvia's post well, and try to keep that in mind too.

Thank you for turning it round for me.

Love,
 

Lucille

Registered User
Sep 10, 2005
542
Brucie said:
Hi Hazel


I believe they are simply getting their bearings in a world gone strange - but since their faculties are compromised, they may have to do so in ways that may seem perverse to us.
QUOTE]

I couldn't agree more with this quote from Bruce. My mum says things which I know are just not true and she makes up stories. I did think, hang on a minute, she's being a bit manipulative here - but I don't think so. She wasn't manipulative before and I think she's trying to get her bearings. Using whatever recall and anything else she can fix on. It's awful, though. Seeing a side of someone you've never seen before.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,405
Kent
Dear Hazel,
I`m glad you managed to `persuade` John to go to his club. He possibly did see the red light. I hope you are well enogh to make the most of the day.

Even though I now realize manipulation is not the name of the game, I do think, to confused minds, carers are seen as security blankets. Any thought of those blankets being lost or taken away, could make them feel threatened and even more vulnerable.

Who can blame them. I`m sure, in that state, I would feel the same.

With love
 

jenniferpa

Registered User
Jun 27, 2006
39,448
While I wouldn't use the word manipulation, do you not think that if from your point of view the entire world was going crazy, that you would become more inner focused, more egotistical, more protective of yourself? I think I would, and I think in that case I would feel a bit me against the world, and because of that, try to get the world to conform to my own wishes. I realise that sounds a bit overly rational, but I think it's a gut instinct in the same way that babies cry when then need something: they're uncomfortable even if they don't know why they're uncomfortable.
 

Margarita

Registered User
Feb 17, 2006
10,824
london
I know I find this dementia/AZ most confusing, you read that they lose that part of caring for anyone, but themselves .

Then amazingly when I say to mum I am so tried I can’t go on (as I have to divide my time caring for my brother even thought he does not live with me) she say to me well put me in a hotel for a while, she means respite, but like to think of it as a hotel,

Sounds a good idea :)
Perhaps I should be ill more often!
anything for a easy life in caring just pretend ( another white lie :)
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Brucie said:
IMHO more likely he is just testing the boundaries of his world at a time when he felt vulnerable.
Mel said:
i felt at times mum was deliberately winding me up.......and at those times I just had to get tough!!
Nada said:
Could it be the other way round? That when he knew you were ill he put you first rather than his own feelings?
Grannie G said:
I do think, to confused minds, carers are seen as security blankets. Any thought of those blankets being lost or taken away, could make them feel threatened and even more vulnerable.
jenniferpa said:
do you not think that if from your point of view the entire world was going crazy, that you would become more inner focused, more egotistical, more protective of yourself? I think I would, and I think in that case I would feel a bit me against the world, and because of that, try to get the world to conform to my own wishes.
Margarita said:
she say to me well put me in a hotel for a while, she means respite, but like to think of it as a hotel,
So many rationalisations, and I think they're all valid.

I do think that last week John was deliberately not understanding what I was saying, because he didn't want to go, because he feels insecure when I'm not there. So self-protection rather than manipulation.

I also believe that today he was putting me first, and that makes me feel good. I don't mind being his security blanket; I just hope he'll be mine for as long as possible.

Thank you all so much, you've helped me sort out my feelings.

Love,
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Skye said:
you've helped me sort out my feelings
... and that, in a nutshell, is what TP is all about. No matter who may be correct [and, let's face it, we could all be wrong here, as well], it is the community and the range of views presented by the great members of TP, that count.

When all else fails a body, self preservation steps in and from that point, anything goes.

For my part, I always give a hundred miles of leeway for Jan. If she were to be manipulating me then I would think that to be manipulation through desperation, and thus to be different from, say, just the wicked manipulation of someone who was not so unwell.

Results may seem the same, but it is the basics that count, to me at least.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Brucie said:
... For my part, I always give a hundred miles of leeway for Jan. If she were to be manipulating me then I would think that to be manipulation through desperation, and thus to be different from, say, just the wicked manipulation of someone who was not so unwell.

Results may seem the same, but it is the basics that count, to me at least.
Dear Bruce

I can't agree more. I would never accuse, or even suspect John of malicious manipulation. All I suspect is that he may occasionally use his known poor comprehension to avoid situations he doesn't want to be in. And yes, we'd probably all do that.

What surprised me was that a) he was capable of it, and b) it was so completely out of character.

I guess the boundaries have just been moved again.

Love,
 

alfjess

Registered User
Jul 10, 2006
1,213
south lanarkshire
Hi Skye

My Dad wasn't devious, but I did notice that when they were living alone in their own home, if Mum was ill, he seemed to draw on reserves and his AZ didn't seem so bad. I think his concern for Mum made him try harder, if that is somehow possible.
I don't know but he was more capable, it's hard to explain

Alfjess
 

Nebiroth

Registered User
Aug 20, 2006
3,511
I would say that it is possible for someone with dementia to be manipulative and devious. I know my Dad does this with my Mum, often to get his own way or to get her to do things he can't be bothered to do himself. I know this because he doesn;t do the same thing with me, when Mum is away to an appointment, and he suddenly becomes much less "helpless".

On the other hand, it's entirely possible for someone with dementia to be much more confused and dependent on one day than another.

It's very hard to distinguish between the two behaviors!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,405
Kent
I have to agree with you Nebiroth, though `manipulative` and `devious` might be a bit strong.

However bad a day my husband has had, our son has never seen the behaviours I have. Our son is the only other person who knows my husband as well as I do, and they are close. Yet even if my husband`s been screaming and shouting, or agressive and unreasonable, the ring of the doorbell puts a stop to it. All our son has seen is a quiet, depressed father.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Grannie G said:
Yet even if my husband`s been screaming and shouting, or agressive and unreasonable, the ring of the doorbell puts a stop to it. All our son has seen is a quiet, depressed father.
I have to say in John's defence, he doesn't do that. If he's in a bad mood, his sons get the benefit of it too.

And I'm so glad about that. It would be so much worse if I were to be made out as the 'wicked stepmother'!
 

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
I avidly read anything I can find about dementia and read a very interesting "first person" article the other day (writer was British) where the mother had AZ and the daughter was the writer.

She gave an example of the constant questioning on the same thing, and said that she had answered "If you keep on asking the same question you'll have to go out in the garden!" (or something similar). Her mother (with AZ) apologised, and DID NOT ASK THE QUESTION AGAIN. Here is another example of the strange way in which patients minds work / don't work. If the mother could remember NOT to ask the question, why couldn't she remember the answer(s!) given previously???!!!

The weird, wacky and woeful world of dementia! Nell
 

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