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They don't tell you these things...

Kitten71

Registered User
Jul 22, 2013
157
East Yorkshire
Spot on drummergirl. You sound so young too. My mum has Lewy Body but fortunately thinks I'm her mam. I know she can't help it but the dead relatives etc., get on my nerves. On another thread I found a link to these videos. They are soooo good & some about Lewy Body which tell you that the Lewy Body, when trying to move, actually makes the person do the opposite eg., trying to get them up off a toilet.
http://www.youtube.com/watch?v=WRC3WLSQSq8
Thank you so much for posting that link. Whilst I watched it with tears streaming down my face, it was so enlightening to understand how my dad is feeling and why he does what he does.
 

clareglen

Registered User
Jul 9, 2013
318
Cumbria
Thank you so much for posting that link. Whilst I watched it with tears streaming down my face, it was so enlightening to understand how my dad is feeling and why he does what he does.
I love this woman Teepa Snow. I've got addicted to the videos. It has helped me be better with mum, although today I moved her from hospital to a care home. She was ranting in the hospital 'they've spiked the water' 'don't go near them they'll get you too'. I'm going 'OK, right' trying to go with the flow as per videos. Then she says 'you're just pretending' :D I'm obv **** at this :rolleyes:

Here's another good reassuring one on the difference between forgetfulness & dementia http://www.youtube.com/watch?v=mJk02XI_sRA
And another one on lewy body behaviour is at (start at 16:37 in) http://www.youtube.com/watch?v=t--mkzfHuIE I've had this with my mum. It's so good to realise that it's not just her against me but normal for this type of dementia. Teepa's role play is so good & helpful.
 

submarine

Registered User
Apr 5, 2013
25
London
Thank you Drummergirl for writing this. I do hope it gets picked up by the media so that as many people as possible read it. So eloquent and so true.
 

Insomniac

Registered User
Apr 29, 2014
39
So sad but so true. People who haven't experienced this have NO IDEA what they are talking about. I wouldn't wish dementia and it's fall out on my worst enemy.

You're doing great drummergirl.


Sent from my iPhone using Talking Point
 

Oxy

Registered User
Jul 19, 2014
955
Isabella, you are so right, this illness takes more than one life! Only problem is that when it's over the 'left overs' will be just that- society's poor unwanted. Whilst caring one lives the life of an old, sick person which ultimately will affect our health adversely and lead to DEM....., vascular at any rate. On benefits and probably unemployed- gov so stupid not to ensure carers get adequate allowance to stop life savings being used up and adequate opportunities for social contact. I will try to get a DNR for myself. I don't want anyone to restart my heart once it's decided to cease beating. Only gives a prognosis of dementia with shoddy care!! They want folk to strive for education but I don't need that now so wish I'd just lived it up instead and on that bright note, I will stop.
 
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Sue J

Registered User
Dec 9, 2009
8,035
I love this woman Teepa Snow. I've got addicted to the videos. It has helped me be better with mum, although today I moved her from hospital to a care home. She was ranting in the hospital 'they've spiked the water' 'don't go near them they'll get you too'. I'm going 'OK, right' trying to go with the flow as per videos. Then she says 'you're just pretending' :D I'm obv **** at this :rolleyes:

Here's another good reassuring one on the difference between forgetfulness & dementia http://www.youtube.com/watch?v=mJk02XI_sRA
And another one on lewy body behaviour is at (start at 16:37 in) http://www.youtube.com/watch?v=t--mkzfHuIE I've had this with my mum. It's so good to realise that it's not just her against me but normal for this type of dementia. Teepa's role play is so good & helpful.
I agree Teepa Snow's understanding of dementia and ways to help are brilliant. We need many more of her in this country.
 

drummergirl

Registered User
Jul 4, 2012
13
Would you consider posting this on Facebook Dementia Awareness group? It is invaluable for people to learn what Dementia really is all about.
Hiya, I'd be more than happy to post it on there - could you send me a link to the group? Thank you x
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
I think you should send it to The Guardian, since that's the paper perhaps most likely to reach SWs and their management, and very likely medics, too. And they would not be so likely as the tabloids to want to turn it into a warts and all 'human interest' piece, with photos and anything you tell them twisted, or at least heavily edited.
 

Mal2

Registered User
Oct 14, 2014
2,968
Enfield
You mentioned carer's allowance.

You have my complete sympathies. Sorry I cannot help in person. BUT this should be published anonymously and sent to our good party leaders who haven't a clue what they spout about, living in their protected capsules. All that is missing is a reference to paltry carers allowance.
All the none too bright canvassers that come to our doors about election should also be given this to read. They are clueless morons just reiterating what their rulers have ordered!!!!
Last year I gave one flavour some words of wisdom and she couldn't get away fast enough as she Only knew how to pass this information on to her party. And that was only about carers allowance!


We don't have much to laugh about, but, your comment on the canvasser, and carer's allowance, did cause me to have a little chuckle to myself.

I have seen the politicians on tv this year, saying all the words they think we want to hear, money for looking for a cure by 2025 (too late for anyone of us) but, until last year ( I don't know about anyone else ) I had never heard anyone discussing dementia.

I was advised by the nurse manager at memory clinic, to apply for attendance allowance for my husband because of his dementia. I did, and she was furious when he was turned down. I gave her all my correspondence and she re-wrote everything for me to re-apply. She said it was ridiculous refusing dementia patients, but, it was all in the way you word the application. It was successful the second time.

I then received a letter stating as my husband had attendance allowance I could apply for carer's allowance Ha Ha!!!!!!!!!!!!!!!!!!!!! I applied only to be told, as I received state pension of 41.00 a week, I could not have the 38.00 carer's allowance. If it had been the other way around, they would have given me the 3.00 difference. I told them they had better keep it, they obviously are in much more need of the 38.00, than I am. What a laugh!! We as carer's, save them hundreds of pounds per week, by not sending our loved ones into care homes. Whether we have a pension or not, we are still caring for them.

My husband was diagnosed 10 years ago, I still care for him on my own. He had a sore bottom and front a couple of months ago with urine burn and I had the council district nurse come in once a week to check how it was, but, with the correct meds they gave me I got it cleared up.

I must say they are the only people that have shown any interest in him. Although everything is ok now, they come once a month just to see how he is, telling me if it wasn't for carer's like myself, they would be overwhelmed with work. Which was very nice to hear, and they are so nice.

I take one day at a time, and tell myself miracles do happen, if not a cure, maybe better medication. My wish for everyone.

I have to go now and get the hoist out, before my husband slides off his chair.

Thank you for the chuckle.
 

stanleypj

Registered User
Dec 8, 2011
10,710
North West
I agree so much with everyone else, Drummergirl. Your post should be read far and wide as it really gets to the heart of the difficulties so many carers face every day, and night.

I can see why the media sometimes over emphasise the 'memory' issue - this is so often where it all starts. But what you have done is to highlight all the other stuff that is so much harder to deal with.

I agree about the Guardian too - by far the most likely paper to publish it. If they do, this would be great and would raise the profile of TP, where people do tell you what it's like and do share their experiences.
 

briana

Registered User
May 23, 2011
60
south wales
said it all

oh drummergirl,,,,, think you said so much that we as carers do/think every day,,,,, had tears in my eyes as I realized this is my day,,, and im sure most people don't even realize this IS what our day is like but we just get up and do,,,,,,,, without even realizing,,xxbb
 

gringo

Registered User
Feb 1, 2012
1,189
UK.
They don’t tell you about any of these things.
No 'they' don't but people on here do.
I’ve only been on TP for something over 2 years, but I’ve lost count of the number of posts I’ve read like this. I’ve posted a few myself, in prose and verse. Ok, so this one is very articulate and more circumstantial than most. But, like all the others, it will soon ‘pass and be forgotten like the rest’. As the Arab proverb goes ‘the dogs bark but the caravan rolls on.’
I don’t think that I’ve ever seen a response to any of these posts from a politician, and I don’t believe we’ll see one any day soon.
We feel a little better after unloading, I suppose. But that’s it.
David Cameron tells us how affected he was by seeing Margaret Thatcher’s decline. Brought tears to my eyes! You would have thought that that would have got headlines. But no.
The sad fact is, until a close family member is affected, and you have to provide ‘hands on care' 24/7, you will have absolutely no idea what it is really like, and how your life will be turned upside down. I fear that I was as ignorant and uncaring as the rest until my wife became a casualty and I was pitchforked into this nightmare world. Until I stumbled on TP. I had no idea what was going on at all, and trying to provide care on my own brought me to my knees.
In the time I have been here I can’t think of any change that there has been for the better. Only TP makes any sense at all. Only on here can you get the information you desperately need, from people who know what they're talking about.
Dementia friends? Dementia champions? In all the years I've been caring for my wife, I’ve never met one of these people down where the caring is done.
 

jaymor

Volunteer Moderator
Jul 14, 2006
13,232
England
No 'they' don't but people on here do.
I’ve only been on TP for something over 2 years, but I’ve lost count of the number of posts I’ve read like this. I’ve posted a few myself, in prose and verse. Ok, so this one is very articulate and more circumstantial than most. But, like all the others, it will soon ‘pass and be forgotten like the rest’. As the Arab proverb goes ‘the dogs bark but the caravan rolls on.’
I don’t think that I’ve ever seen a response to any of these posts from a politician, and I don’t believe we’ll see one any day soon.
We feel a little better after unloading, I suppose. But that’s it.
David Cameron tells us how affected he was by seeing Margaret Thatcher’s decline. Brought tears to my eyes! You would have thought that that would have got headlines. But no.
The sad fact is, until a close family member is affected, and you have to provide ‘hands on care' 24/7, you will have absolutely no idea what it is really like, and how your life will be turned upside down. I fear that I was as ignorant and uncaring as the rest until my wife became a casualty and I was pitchforked into this nightmare world. Until I stumbled on TP. I had no idea what was going on at all, and trying to provide care on my own brought me to my knees.
In the time I have been here I can’t think of any change that there has been for the better. Only TP makes any sense at all. Only on here can you get the information you desperately need, from people who know what they're talking about.
Dementia friends? Dementia champions? In all the years I've been caring for my wife, I’ve never met one of these people down where the caring is done.
Hi Gringo,

I am a dementia friend and have been one for some time. I spent 7 years down on the coal face of the mine called Alzheimers and a further two years of watching over my husband being cared for in a nursing home. I still make my presence felt every day, they know I am not going away. I try my very best to help others but it will be a long time before dementia friends and champions will make a difference, if they ever will any time soon. Volunteers are great but we will never find a cure or get the right care relying on volunteers.

The government now saying they are all going to become dementia friends is laughable. How can they help when they have no idea what living with dementia is and how many if it did enter their lives would be hands on? Non of them is the answer because they would plead important jobs and could afford unlimited carers to do the job. It is all lip service.

You are so right, TP is where we get help, support and friendship,we are an extremely large self help group doing the very best we can to hold each other up and keep smiling.

One day someone will wake up and ask why have we not done anything about dementia?

Most of the carers on my husband's floor have or have had a member of their family suffering from dementia and that is why they are excellent caring carers.

Well I am off to bed now with a good book and hot chocolate, sermon over.

Jay
 

gringo

Registered User
Feb 1, 2012
1,189
UK.
Jay,
I am a dementia friend and have been one for some time.....
So now I know of just one dementia friend!

….The government now saying they are all going to become dementia friends…..
I still only know of just one dementia friend!
Well I am off to bed now with a good book and hot chocolate, sermon over.
Jay
I was about to say, I think I'll join you! Stopped to think for a change!
You would be one of the very few people who could preach a sermon I would be prepared to listen to.
 

jaymor

Volunteer Moderator
Jul 14, 2006
13,232
England
Jay,


So now I know of just one dementia friend!



I still only know of just one dementia friend!

I was about to say, I think I'll join you! Stopped to think for a change!
You would be one of the very few people who could preach a sermon I would be prepared to listen to.
Gringo you are a charmer,

Jay x
 

henfenywfach

Registered User
May 23, 2013
332
rct
Hi...as a carer for my dad who has dementia with lewybodys...youre absolutely spot on...they do say dlb can change from minute to minute and no kidding they got that right!..its impossible to plan really..and staff at social services said well its so changeable theres no service that can run like that!..really?..how come us carers are managing to do it for our loved ones?... im more annoyed at not what they dont say but what they do say that shows the powers that be are saying sorry we dont know what we can do..no training no money no understanding!..if professionals cant cope with it..why is it ok for us to have to?...ive been on every course I can watched every video read all factsheets..the daily reality is humungously harder..and more emotional..I think we deserve a big pat on the pat for how we cope..im saying well done to you..its not a lot of comfort but I think you deserve it!

Sent from my GT-I9505 using Talking Point mobile app
 

Isabella

Registered User
Jan 4, 2014
103
Someone mentioned to me today how good it is that dementia is in the news so much these days. Yes, the word is mentioned in the news more now. But what this person doesn't and couldn't understand is that the dementia they hear about is a sanitised version that doesn't come close to reality - you don't hear a lot of incontinence stories in the news when they talk about the symptoms, for instance.

I am all for raising awareness, but they're not telling it like it is, and that's why it isn't getting the support it needs. Because people think it's a bit of memory trouble, and don't realise it is total devastation of everything the person ever knew and did - including things so basic - like going to the toilet or knowing how to open the front door - it is difficult to believe that someone could actually forget them unless you witnessed that devastation first hand.
 

win

Registered User
Oct 14, 2012
90
Hiya, I'd be more than happy to post it on there - could you send me a link to the group? Thank you x
Thank you Drummergirl I don't thinkIcanactually post you a link but you
go to Face book and then search for Dementia Awareness group. apply to join the group which they will do and then you can post. Only people who have joined the group can see your post. It does come up on your wall but only you can see it. Are you already familiar with Face Book? Hope you succeed if not let me know please and I will try to copy and post it for you with your permission.
 

win

Registered User
Oct 14, 2012
90
Someone mentioned to me today how good it is that dementia is in the news so much these days. Yes, the word is mentioned in the news more now. But what this person doesn't and couldn't understand is that the dementia they hear about is a sanitised version that doesn't come close to reality - you don't hear a lot of incontinence stories in the news when they talk about the symptoms, for instance.

I am all for raising awareness, but they're not telling it like it is, and that's why it isn't getting the support it needs. Because people think it's a bit of memory trouble, and don't realise it is total devastation of everything the person ever knew and did - including things so basic - like going to the toilet or knowing how to open the front door - it is difficult to believe that someone could actually forget them unless you witnessed that devastation first hand.
So very true, become a Dementia Friend and help to bring awareness.
 

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