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They don't tell you these things...

clareglen

Registered User
Jul 9, 2013
318
Cumbria
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?...
My mum has Parkinson's Disease Dementia with Lewy Body & yes they do change from minute to minute. This week I've managed to get her into a lovely care home but one home, after assessing her in hospital, turned her down flat as she was too much/too bad for them. I thought welcome to my world.
 

Chrismitch

Registered User
Jun 23, 2011
127
I can't get this post out of my head and I'm sure im not the only one. I'm sure we could do something momentous here. Something similar has been done before to save something being scrapped. As long as everyone can muster enough energy. If each one of us could simultaneously send in our own story, like drummer girl's story, on say 15 November or 1 December, to the guardian, daily mail, bbc, Cameron, clegg, milliband, health secretary, woman's hour, loose women, etc - really bombard everyone who has a voice. And we could all log on to a specific government website (to be decided) at the same time it will block the site. We could send letters and/or emails and faxes. One of the newspapers may be persuaded to start a daily column on 'No one told me that x y z'
It might be a way of getting 'The big D' discussed and addressed. Does anyone think it is worth a try - a concerted simultaneous effort?
 

Perdita

Registered User
Jun 22, 2009
219
Suffolk, Uk
I can't get this post out of my head and I'm sure im not the only one. I'm sure we could do something momentous here. Something similar has been done before to save something being scrapped. As long as everyone can muster enough energy. If each one of us could simultaneously send in our own story, like drummer girl's story, on say 15 November or 1 December, to the guardian, daily mail, bbc, Cameron, clegg, milliband, health secretary, woman's hour, loose women, etc - really bombard everyone who has a voice. And we could all log on to a specific government website (to be decided) at the same time it will block the site. We could send letters and/or emails and faxes. One of the newspapers may be persuaded to start a daily column on 'No one told me that x y z'
It might be a way of getting 'The big D' discussed and addressed. Does anyone think it is worth a try - a concerted simultaneous effort?
That's a good idea, I'll keep an eye on this thread.

Fantastic post drummer girl :)
 

clareglen

Registered User
Jul 9, 2013
318
Cumbria
If each one of us could simultaneously send in our own story, like drummer girl's story, on say 15 November or 1 December, to the guardian, daily mail, bbc, Cameron, clegg, milliband, health secretary, woman's hour, loose women, etc - really bombard everyone who has a voice. And we could all log on to a specific government website (to be decided) at the same time it will block the site. We could send letters and/or emails and faxes. One of the newspapers may be persuaded to start a daily column on 'No one told me that x y z'
It might be a way of getting 'The big D' discussed and addressed. Does anyone think it is worth a try - a concerted simultaneous effort?
Love it! I'm up for it. We could do it if we've got plenty of notice and the links to the places to send it.
 

Mal2

Registered User
Oct 14, 2014
2,968
Enfield
I can't get this post out of my head and I'm sure im not the only one. I'm sure we could do something momentous here. Something similar has been done before to save something being scrapped. As long as everyone can muster enough energy. If each one of us could simultaneously send in our own story, like drummer girl's story, on say 15 November or 1 December, to the guardian, daily mail, bbc, Cameron, clegg, milliband, health secretary, woman's hour, loose women, etc - really bombard everyone who has a voice. And we could all log on to a specific government website (to be decided) at the same time it will block the site. We could send letters and/or emails and faxes. One of the newspapers may be persuaded to start a daily column on 'No one told me that x y z'
It might be a way of getting 'The big D' discussed and addressed. Does anyone think it is worth a try - a concerted simultaneous effort?
Well I'm willing.

The politicians do not want to know, they just pass the buck, in my experience.

My husband became incontinent just over 2 years ago. I was delighted when my council supplied the yellow bags, which were collected each week and taken to the
incinerator. Wonderful.

Last year they decided to stop this service, and I was told to put the soiled incontinent pads in the normal black bag rubbish. (They still collect dressing and needles in the yellow bags). Now the guy works 1 day week collecting those and the other 4 days they found him something else to do. Apparently the Dept of Health does not feel this is a health hazard. I am not certain that other Councils have taken this stance, another way of saving our Tax payers money, which we the tax payer thought THAT WAS WHAT SOME OF OUR MONEY WENT TOWARDS.

The thought of tons and tons of soiled pads being put on landfill tips I find disgusting.
So with my back up,I thought, GO TO THE TOP. So I wrote advising our 'beloved' Prime Minister of what was happening.

I started with the sentence, "I am sure this letter will probably not be read by you, but, I am so angry at this situation, I feel you should know of mine and many others situation with the following problem. I proceeded with all the information.

I did get a reply, BUT, you guessed it, not from our illustrious leader, from one of his underlings. Informing me the PM was most sorry to hear of my husbands illness, but, he does not deal with matters like mine, that is left to the Council, and perhaps I should get in touch with them on the matter. Idiot, what did they think I had been doing, just showing my letter had not been looked at properly.

Ahhh!! Maybe help is here!! The council elections, and there they are, the canvassers, and YES a leaflet, IF YOU HAVE A PROBLEM PHONE ME AND I WILL LOOK INTO IT FOR YOU. Hooray, a Knight in shining armour?????? Now don't get too excited.

I must admit, the MP did try his best. I later received an e-mail from him, saying the Council was not very co-operative, but, they had sent him an e-mail regarding this matter. They told him that the soiled items were in fact sent to the incinerator.

Now I am only a simple citizen, but, as I replied to the MP. "Are the Council telling us that they open every black bag to see which ones have the soiled items in them, or are we now being told that all black bag waste is sent to the incinerator, I THINK NOT". Needless to say, I haven't heard again from MP. Still ELECTION DRIVE soon, shall I catch all the canvassers when they call???????

This is just one of the annoying things, that some idiot in the Council decides will save money, why do we never get consulted on how they spend OUR MONEY.

Whatever these politicians are saying, it definitely is not with any input from us THE CARERS. This is all for the getting of votes next year.
 
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halojones

Registered User
May 7, 2014
438
politicians

This has been on my mind for a while, how we are not heard, how difficult our lives are being made , with all the beaurocrasy, unhelpful councils etc,etc when all we are all doing is trying to care for our sick relatives!..David Cameron has been in the news lately saying how sad he was for Margaret Thatcher having Alz,how he is worried he may get it as well...! The thing is MT was living in the Ritz Hotel, she had the best private medical care, carers, the only services she needed was Room Service.no waiting 6 months for a OT visit, no NHS Hosp for MT,no underpaid agency carers.!....This is HIS experience of dementia.,which he wants to debate in parliament.:eek:.! This is not our experiences, we are at the front line,the grass roots of it all, with all the cut backs ! There are 800,00 sufferers and their carers..We are all voters, so we should be allowed to say how it really is for US, !In Mitcham, South London they have just opened a HUB, with everything that is needed in one place, it sounds wonderful..:).I think the least we all should be allowed to ask for is a HUB in every town..We are being taken advantage off and treated extremely badly by our government.. How do we put our views accross? There is a campaign called Right to Know, by the Alz S, but all they are asking is for extra support workers.? That is not enough.! Is this all we are going to get?..But I am onboard, Chris and Mal2 and all other Carers...November would be best, we will get lost in christmas in Dec..As I am typing this ,the politicians are canvassing on TV, when they come to my door,I will be showing them these posts!Doing an online petition is a good place to get our voices heard... Change.org...!
 
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drummergirl

Registered User
Jul 4, 2012
13
Hi everyone

I've been busy contacting everyone I can think of who has any sort of connection to this disease to see if they'd be able to help us to get heard.

I'll keep you updated and let you know if I get anywhere.

I also agree that if we all contact the press and the politicians on a certain date with our stories, then they might take some notice. They might not, of course, but it's worth a shot.

It's about time people were made aware of what it's really like to live with this disease.

I hope you are all doing ok, and thank you again for all your kind words.

drummergirl x
 

halojones

Registered User
May 7, 2014
438
politicians

I have just received a canvassing letter/survey from a local candidate, there was no mention about the elderly or Alz problems, so obviously the candidate does not know we exist.. ..I have filled it in and pointed out the TP forum..The office for this party is nearby, so I will go in to discuss our problems and that we all need a HUB in our areas..It would make so much difference for everyone..A great way to get heard is by an online petition, Change.org...I don't know enough about politics to start this, but it would be a voice for us all if someone with the knowledge and experience could start it...I know Norms has a change.org petition going, but its not for a HUB.....This is our opportunity to be heard ,as it seems we are either invisible or all living in the Ritz Hotel...
 

Oxy

Registered User
Jul 19, 2014
955
Yes Drummergirl, that would be great-I am all in favour for us all to contact politicians.
 
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Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
My local MP is quite responsive, although whether she could/would actually do anything is open to discussion ;) She has at least, though, always replied to me when I've written on other matters...

If people are looking for a 'day of action', how about 28th November, which is nationally recognised as Carers Rights Day? I believe this is co-ordinate via Carers UK?

I am not an expert on any of this, just thought I'd add my two penn'orth!! :D xx
 

bez19766

Registered User
Oct 20, 2014
3
Merthyr Tydfil
This is how it is so sad

My mother has had Lewy Body Dementia for the past three years. I recently read an article in a national newspaper giving advice about how to care for a loved one with dementia. The gist of it was that you have to ‘see past’ the disease, as the person you love is ‘still in there somewhere’.

It said you have to be patient, keep calm, and try to inhabit the ‘dementia world’, wherever that is. It may as well have recommended buying a unicorn and riding it there.

I’m not going to pretend I have answers, because I haven’t. I’ve stumbled through the last three years with absolutely no idea if I’m doing the right thing or not.

What that article failed to offer, like most of the others I’ve read over the past three years, is useful, realistic advice about the hundreds of bizarre everyday challenges that dementia brings with it. They don’t tell you about the reality of what it’s like to live with this appalling disease.

They don’t tell you how to deal with your previously kind, gentle mother swearing at you and hitting you in the head as you desperately coax her into the shower to try and get rid of the ever-present smell of urine.

They don’t tell you what sort of nappies to buy when she becomes incontinent; let alone how you’re supposed to persuade her to wear one, or how to stop her taking it off and stashing it in a pillow case.

They don’t tell you how to persuade her to take her medication when she’s screaming that she’s going to call the police because you’re clearly a member of the Gestapo who’s trying to poison her.

They don’t tell you what to do when she thinks that the small boy you pass on your walk is her grandson and so wants to talk to him. Neither do they tell you how to placate the angry parents who think they’ve encountered the world’s frailest child snatcher.

They don’t tell you about the helpful passer-by who insists on intervening because they’ve mistaken her having a meltdown in the street (and you desperately trying to get her home) for a geriatric kidnapping.

They don’t tell you about the anger and resentment that arises when your siblings choose to become invisible and stop visiting, leaving you to deal with the whole sorry nightmare because they’ve got kids and you haven’t, and therefore you clearly have nothing better to do.

They don’t tell you about the hours of paperwork, endless bureaucracy and pointless meetings with Social Services you have to trudge through when all you desperately want is some advice and support, but it takes six months for them to assess whether or not you’re entitled to even get on the waiting list for advice and support.

They don’t tell you about the hours you’ll have to spend on the phone trying to claim disability benefits for her because the person on the other end insists that they have to speak to her personally in case, as her daughter, you’re trying to steal from her. They’re sorry but they really do have to check with her that this isn’t the case, regardless of the fact that she can’t remember her own name, let alone how to use a phone, because that’s how the system works.

They don’t tell you about the GP’s visible annoyance when you bring her to get checked for a urinary infection for the fourth time in six months, even though they were the one who advised you to bring her for regular checks. Of course she’s displaying peculiar behaviour, she has dementia, and they have lots of other patients to see today. Cheers doc.

They don’t tell you about the friends she’s had for years who gradually stop coming to visit because they ‘hate seeing her like that’. I’m pretty sure she hates being ‘like that’ too, but she could really do with a friend. They’ll all be at her funeral though, because that’s what friends are for, isn’t it?

They don’t tell you how to deal with the crushing realisation that she’s never even going to be able to phone you again, let alone see you get married or be a grandmother to your kids.

They don’t tell you how to channel the anger you feel when you realise that your fellow 30-somethings’ lives now revolve around marriage, mortgages and kids and yours revolves around a terminally ill, confused old lady who doesn’t even know who you are. They’ve chosen their responsibilities; you’d give anything not to have yours.

They don’t tell you how to deal with discriminatory landlords who don’t want her living in their property because dementia has rendered her, in their eyes, a ‘threat to the community’ (but that’s a whole other story).

They don’t tell you how to not laugh when she insists that you give ‘the kids’ a bath, because ‘the kids’ only exist in her head but you still run the bath and carry out an impressively elaborate child-bathing mime because it makes her happy, and she doesn’t have an awful lot to be happy about these days.

They don’t tell you what to say when your 67 year old mother cries because she thinks she’s 12 and panics because she can’t find her (long dead) mother and she’s packed all her belongings and begs you to just take her home.

They don’t tell you about any of these things.
Hi Drummergirl
This is my first post on here as I only joined today I am so sorry to hear about the problems you have had but this seems to be so widespread. My partners both parents have dementia and we have experienced all the things you have written about and I think its appalling, and these type of problems should never happen and most of it is down to people not doing their job properly. We have had major issues with social services who are a total waste of time the care system is a absolute shambles we need to stand up and be counted and not let them treat our loved ones like animals.

David
 

drummergirl

Registered User
Jul 4, 2012
13
Hi all

Just letting you know the Alzheimer's Society have just tweeted a link to this thread from their official Twitter account. It's a good start!

Hope you're all doing ok,

drummergirl x
 

lillybo

Registered User
Nov 10, 2011
28
Love to all carers

I am free at last, my husband is an assessment unit. No one knows the journey of a carer unless you been there. The last 7 years have been very challenging
I would not wish it on anyone
 

Tiz

Registered User
Feb 6, 2009
34
SW England
My mother has had Lewy Body Dementia for the past three years. I recently read an article in a national newspaper giving advice about how to care for a loved one with dementia. The gist of it was that you have to ‘see past’ the disease, as the person you love is ‘still in there somewhere’.

It said you have to be patient, keep calm, and try to inhabit the ‘dementia world’, wherever that is. It may as well have recommended buying a unicorn and riding it there.

I’m not going to pretend I have answers, because I haven’t. I’ve stumbled through the last three years with absolutely no idea if I’m doing the right thing or not.

What that article failed to offer, like most of the others I’ve read over the past three years, is useful, realistic advice about the hundreds of bizarre everyday challenges that dementia brings with it. They don’t tell you about the reality of what it’s like to live with this appalling disease.

They don’t tell you how to deal with your previously kind, gentle mother swearing at you and hitting you in the head as you desperately coax her into the shower to try and get rid of the ever-present smell of urine.

They don’t tell you what sort of nappies to buy when she becomes incontinent; let alone how you’re supposed to persuade her to wear one, or how to stop her taking it off and stashing it in a pillow case.

They don’t tell you how to persuade her to take her medication when she’s screaming that she’s going to call the police because you’re clearly a member of the Gestapo who’s trying to poison her.

They don’t tell you what to do when she thinks that the small boy you pass on your walk is her grandson and so wants to talk to him. Neither do they tell you how to placate the angry parents who think they’ve encountered the world’s frailest child snatcher.

They don’t tell you about the helpful passer-by who insists on intervening because they’ve mistaken her having a meltdown in the street (and you desperately trying to get her home) for a geriatric kidnapping.

They don’t tell you about the anger and resentment that arises when your siblings choose to become invisible and stop visiting, leaving you to deal with the whole sorry nightmare because they’ve got kids and you haven’t, and therefore you clearly have nothing better to do.

They don’t tell you about the hours of paperwork, endless bureaucracy and pointless meetings with Social Services you have to trudge through when all you desperately want is some advice and support, but it takes six months for them to assess whether or not you’re entitled to even get on the waiting list for advice and support.

They don’t tell you about the hours you’ll have to spend on the phone trying to claim disability benefits for her because the person on the other end insists that they have to speak to her personally in case, as her daughter, you’re trying to steal from her. They’re sorry but they really do have to check with her that this isn’t the case, regardless of the fact that she can’t remember her own name, let alone how to use a phone, because that’s how the system works.

They don’t tell you about the GP’s visible annoyance when you bring her to get checked for a urinary infection for the fourth time in six months, even though they were the one who advised you to bring her for regular checks. Of course she’s displaying peculiar behaviour, she has dementia, and they have lots of other patients to see today. Cheers doc.

They don’t tell you about the friends she’s had for years who gradually stop coming to visit because they ‘hate seeing her like that’. I’m pretty sure she hates being ‘like that’ too, but she could really do with a friend. They’ll all be at her funeral though, because that’s what friends are for, isn’t it?

They don’t tell you how to deal with the crushing realisation that she’s never even going to be able to phone you again, let alone see you get married or be a grandmother to your kids.

They don’t tell you how to channel the anger you feel when you realise that your fellow 30-somethings’ lives now revolve around marriage, mortgages and kids and yours revolves around a terminally ill, confused old lady who doesn’t even know who you are. They’ve chosen their responsibilities; you’d give anything not to have yours.

They don’t tell you how to deal with discriminatory landlords who don’t want her living in their property because dementia has rendered her, in their eyes, a ‘threat to the community’ (but that’s a whole other story).

They don’t tell you how to not laugh when she insists that you give ‘the kids’ a bath, because ‘the kids’ only exist in her head but you still run the bath and carry out an impressively elaborate child-bathing mime because it makes her happy, and she doesn’t have an awful lot to be happy about these days.

They don’t tell you what to say when your 67 year old mother cries because she thinks she’s 12 and panics because she can’t find her (long dead) mother and she’s packed all her belongings and begs you to just take her home.

They don’t tell you about any of these things.
......

And when you are in the middle of trying to deal with all this, they certainly don't tell you that you won't be able to get (paltry) carer's allowance until you have been "back in the country for 6 months" even though you are returning to the town where you were born and grew up....specifically to care for your mum..... Hugs for you xx
 

Gillybuns

Registered User
Jul 13, 2012
11
Dumfriesshire
If you know what you're looking for, there is help out there. I know, i've met so many on my journey over the last 5 years caring for my Dad. So many people with fancy job titles and fat pay packets to match, so/too many pen pushers out there, but the reality is, the only people who truly know what you are going through are other carer's. At the beginning we think it's ok, we can cope, we'll manage, somehow, but as time goes on it gets harder and harder. We have all been at boiling point, and we have all thought we can't go on, but deep down, somehow we manage. Chin up xx
 

Tiller Girl

Registered User
May 14, 2012
96
Count me in !

Please count me in on this venture. I'm sure if we make enough noise and disruption, someone , somewhere will take notice. If we sit back and wait for things to happen we could be waiting for a very, very long time.

We also need to offer suggestions of improvements , preferably things that may not cost too much money.

We don't want to just moan about our situation, we need to come over as positive people who want to raise the issue of dementia and tell those who can help us exactly what it is we need.
 

bovril

Registered User
Aug 29, 2008
4
Devon
Lewy Body

Hi Drummergirl. You are so right in what you say. My Husband has had Lewy Body now for some 9 years. It has been a constant battle with all the organisations that are government run who should be there to help you. Nobody wants to help and advise you so you go along completely blind. When my Husband and I where told he had Lewy Body the doctor said before we left 'good luck' little did I know what was in front of us. Bovril