It makes me boil!

[Michael E]

Other tourists did turn to look at her and even had amusing smiles on them and when the waiter brought the coffee, she spilled it etc.

Sue hi,

Really dreadful - can understand a bit how you feel but with the added racist 'smirks' it must have been horrid - although I was laughing about the supermarket incident in truth I did not know how to handle it... Check out girls couldn't give a monkeys but the other 'shoppers' ...

One of he really difficult things about AD is that it does not 'show'. In fact frequently (but not always) a new acquaintance will think there is nothing wrong - With the other major illnesses there is a sign - no hair for Cancer - shakes for Parkinson's types - wheel chairs or crutches for others. For AD there is the 'soft shoe slow shuffle' and the slightly dead 'hung over' features but you have to know it to know it.

I made the decision a long time ago (3 years feels quite long but its hardly past the start mark of course) that I would just tell everybody up front as soon as they made contact. People can then either accept it all or walk... Quite a lot can accept it for occasional visits... I also post the AD TP link on my emails and all the Internet forums I visit... I just think the illness needs talking about - recognising for what it is. I also don't think it should be dressed up as something 'acceptable' - its not. But it is also what it is so the world better get used to it - cos it ain't going away and it could be you next...

Michael

 

[Michael E]

Or post a picture?

Michael,

Michael,
Perhaps if you showed them your fishing tackle, they would back off????
Reply With Quote

Women!

 

[Norman]

Micheal
I think that is awful,made me so mad.
The best reply I read on here somewhere,say to the staring ones---"You have heard of Alzheimer's,now you have seen it".
I don't know what that is in French!!
Best Wishes
Norman

 

[mel]

This is certainly not a criticism of my dad....but he almost looked upon mum's disease as something to be ashamed of ....he didn't talk about it and always used to tell people(me included) mum was "under the weather"....if only he'd talked about it more......Is it his generation that feels like that do you think? I suppose he would have been about 79 when things started getting bad....My brother and I have no qualms about talking about it....in fact it's quite surprising how many families are affected by it in one way or another....
Wendy



PS How long will it be before we see the photo of Michael's tackle?

 

[Nell]

Makes you want to have a sign handy in various languages that say, " My wife has AD, ignore her !!"

Here in Australia the families of children with autism often carry a card (provided by the Autistic Association) which says that their child is autistic and with this condition comes behaviour that is outside the normal range for children of his/her age. Please ignore the behaviour as it is part of the condition of autism. (Only it is much better worded than that!)

Parents whose autistic children are misbehaving can just hand it to onlookers who are being critical. This is helpful because autistic children don't look as if they have a disability so parents are often accused of being "bad parents".

Makes me wonder if carers of people with AD need something similar . . . ?

 

[Michael E]

Nell hi,

I think the card or sign is a good idea except I really do wonder what percentage of the population actually know or understand what Alzheimer's is... It is only anecdotal but most of our immediate family - kids - brother in law and wife all said -'Oh yes. I know all about it'
It quickly became apparent that there was only a very superficial knowledge and understanding of how the symptoms present. Took me a long time to get them to read some literature or visit an AD advice centre. They still are not fully understanding I think........

One of the problems of AD is that the general public really does not know very much about how it impacts on the life of the sufferer. I think it is like cancer 20 years ago and needs greater exposure. The problem of course is that unlike cancer which can have 'happy endings' in some cases with this there is only an ending, that is not too dignified..

love

Michael

 

[Tender Face]

I think it is like cancer 20 years ago and needs greater exposure. The problem of course is that unlike cancer which can have 'happy endings' in some cases with this there is only an ending, that is not too dignified..

Michael, you have started to articulate what I have been mulling over for some time..... mostly in answer to my internal demons asking why has mum's situation has 'got to me' when I have seen so much of cancer (and even today live with my husband battling it, just at the moment winning the war, thank God!).....

Lots to get on the soapbox about here (money for research, drug treatments etc) if I'm not careful .... but I think one fundamental difference is 'prognosis'.

Even when cancer proves to be terminal, patient and carers generally have a 'timescale'... and some idea of exactly how the disease will progress and what, if anything can be done about it - even if only in terms of palliative care -hardly a positive, maybe. And yes, with many cancers, there IS hope ..... new treatments, new 'cures' - we don't have that in dementia world (yet!)

I've heard so many times people describe a journey with dementia as a 'rollercoaster' - anyone else ever ridden the 'Space Invader'? That to me, is exactly what ride I feel I am on now - not just a rollercoaster, but (almost) completely in the dark... THAT'S what makes it so scary.

May not be a good analogy, but if living with cancer is like the 'Pepsi Max' at least you can see what's coming - in the 'Space Invader' you know you're in for a bumpy ride, but never knowing quite what's going to happen next and whether it is going to end suddenly or how long the hellish ride might last.... just that it will end, somehow.....

Sorry, the cancer vs. dementia debate must be fraught with all sorts of angst for many. It's certainly raging a battle for me.....

Love to all, Karen, x

 

[Norman]

Karen
I think this quote is a good description of AD.

Even when cancer proves to be terminal, patient and carers generally have a 'timescale'... and some idea of exactly how the disease will progress and what, if anything can be done about it - even if only in terms of palliative care -hardly a positive, maybe. And yes, with many cancers, there IS hope ..... new treatments, new 'cures' - we don't have that in dementia world (yet!)

AD is evil we do not know from minute to minute, hour to hour, day to day ,what is next .
How much longer will it go on?
When will it end?
How will it end
We think after years of caring that we know about and understand AD,but we don't.
AD is like a monster which will grant a release when it has tortured the sufferer and the carer long enough.
There is no hope ,there are no new cures for AD,the only hope that we have is being taken away by NICE.
Norman