storytelling & making things up

[Channy]

I know that this is part of the disease but this evening she wrote herself a note to remind herself to be somehwere tomorrow (which would be good in any normal situation). The problem is the location is in another country. I tried to explain to her that we are in a different place but she did not wantr to take it on board.

Has anybody had any experience of this and what stage of the disease is this?

 

[Big Effort]

Hi Channy,
I have had a pretty stressful day in Dementia Land myself, so my reply may be off the mark.

If my husband had read your post (which he hasn't), he would tell me NOT to correct my mother, that there is no point, and setting her straight is one way to create upset, further obsessing and an argument.

I pass this golden advice on to you. If you point something out to the person and they won't accept what you say..... even if you are in the right...... just drop it. A case of least said, soonest forgotten.

What stage? I don't really hold much truck with this stage business. I think professionals use this as it helps them to look knowledgeable. As if they know where we are in this disease. Mum is just entering 'severe' stage, stage 6 they call it, I think, though not stage 6 in France (see what I mean, even specialists can't agree on this), and she is no longer able to work things like this out. At least your Mum is thinking, attempting to plan, even if she gets locations, times and place wrong.

I can imagine how upset you feel. It always bowls us over when they start displaying behavior that is clearly wrong. I was tugged right out of my comfort zone and had to look dementia in the face. Obviously I had hoped to see Mum, but dementia had momentarily taken her place.

Today was an off day for me because Dementia was centre stage today, flaunting antics at every turn, and each behaviour a new one. Not a great day for me. The blessing is Mum remains largely unaware of this - she deems all normal, and still says she is in perfect health with no memory problems.

Hope your Mum has forgotten her appointment abroad tomorrow. Easier that way for both of you. Take care, BE

 

[Just thinking]

I agree with the above, to just go with the flow and agree where you can.

You say Mum left herself a note for the next day. Frankly, if it was me, I'd just dispose of the note once Mum had gone to bed. Chances are by next morning, she'll have forgotten all about it anyway. If by some chance she does remember it, deflect the situation by saying something along the lines of, well you have your breakfast and I'll look for the note. Again, by the time she's finished eating, she'll more than likely have moved on with some other thought.

As carers, I think we have to realise that Dementia sufferers are not necessarily in the same 'time zone' as we are and that no amount of trying to convince them that 'today is today' will change that in their mind. By agreeing with 'where they are in time' life becomes a lot easier for you and them.

 

[Just thinking]

Ps

I don't think the 'stages' are that clear cut. I think it's different for everybody and the rates at which it progresses also varies. I imagine professionals possibly label them according to clinical signs but that's just a guess as I really don't know.

 

[jeany123]

My husband used to make things up that could not possibly be true, then tell lies to try and explain it a long time before he was diagnosed with dementia, so even at the very early stages it can happen,


Jeany x

 

[Izzy]

That's actually just made me remember something about Bill. He was diagnosed in 2001 so thankfully for him it has been a slow progress through the stages. If we're talking stages I would say he is mostly at stage 6.

Now I think about it there was a time that if anyone mentioned any country in the world Bill would confidently say he'd been there. It was odd because there were traces of reality in it. He had done his national service in Korea and he always said his visit was when he was in the army. Sometimes what he said was right but mostly I knew he'd never been to some of the places. He's past that now and doesn't even remember being in the army.

 

[Hair Twiddler]

If my husband had read your post (which he hasn't), he would tell me NOT to correct my mother, that there is no point, and setting her straight is one way to create upset, further obsessing and an argument.

80% of the time I would agree with BE's husband and follow this tactic with my mum. (My husband also advocates this response) However more and more mum's stories and fancies are becoming poisonous.

Mum is officially at mild stage dementia but IMO this particular trait is heading "off the scale". A nurse stole mum's ring, people being rude, me? I'm always shouting at mum, I've stollen her car and several pieces of furniture have been "chopped up" by me, so agreeing in these instances isn't an option.
I try to explain - oh dear this causes even more agitation along the lines of "No you did not!" "Yes I did".

So what's the answer? I'm afraid I don't have it. Distraction and redirection sometimes works - but if mum is on a "hot" one forget it. I often come up with an excuse to leave the room nothing resolved - I'm sure both of us stare at the door then between us fuming and crying in equal measure.

Really hope someone comes along with an answer to this. The only bit of practical advice I can give is try to anticipate "big issues" and record the reality of the event in some detail in a diary for your mum to see and re-read whenever she (or you) may need to - it may throw up more incredulity but it might help.
Twiddler x

 

[Grannie G]

I know that this is part of the disease but this evening she wrote herself a note to remind herself to be somehwere tomorrow (which would be good in any normal situation). The problem is the location is in another country.

My husband always wanted to return to Manchester, believing it to be India. He was born in India , but had lived in Manchester longer than he had lived in India so confused the two. There was absolutely nothing I could do to persuade him he wouldn`t find his family in Manchester. It is when `going home` could be anywhere.

 

[SWMBO1950]

I really dont think they make it up or at least not on purpose. In the mind of a dementia sufferer 'it is real'. Best to just go along with it, change the subject or in the case of notes quietly get rid of them.

 

[Witzend]

Now I think about it there was a time that if anyone mentioned any country in the world Bill would confidently say he'd been there.

My mother was the same - absolutely anywhere mentioned on TV and she'd been there. It's true she'd travelled quite a bit with my father after they retired, but Afghanistan, Ethiopia, Kazakhstan...? This was when she was still in relatively early stages - I soon stopped saying, 'Er, I don't think so.'

Instead I'd say, 'Oh, yes, was it nice?'

Invariably she'd reply, 'I can't remember.'

 

[Canadian Joanne]

Instead I'd say, 'Oh, yes, was it nice?'

What a perfect answer!

 

[Channy]

Thanks guys for your comments. After I had read the note I had disposed of it for fear of her leaving the house, during the day whilst I was at work, trying to find this place.

I think from now I will do what witzend does - that did make me giggle! x

P.S At the time of writing this message I am listening to my gran tell my boyfriend some untruths (again). I just giggle inside now - there really is no point getting upset about it. It's just strange how quickly she has deteriorated.

 

[oldsoulchild]

id say agree with her and save both of you the stress. in her mind its all very real. when my mam was 'on one' and couldnt be distracted, it was coats on and in the car, off to asda cafe for a brew and a bit of shopping....
worked almost every time

 

[steviep]

If there are stages then there are only two in Mum's case.

She's gone from stage 1 mild to stage 2 severe in just a few short months.

As for tale-telling etc, if she could write a book it would be a best seller!