They don't tell you these things...

Discussion in 'I care for a person with dementia' started by drummergirl, Oct 11, 2014.

  1. clareglen

    clareglen Registered User

    Jul 9, 2013
    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.
  2. Chrismitch

    Chrismitch Registered User

    Jun 23, 2011
    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?
  3. Perdita

    Perdita Registered User

    Jun 22, 2009
    Suffolk, Uk
    That's a good idea, I'll keep an eye on this thread.

    Fantastic post drummer girl :)
  4. clareglen

    clareglen Registered User

    Jul 9, 2013
    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.
  5. Mal2

    Mal2 Registered User

    Oct 14, 2014
    #65 Mal2, Oct 18, 2014
    Last edited: Oct 18, 2014
    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.
  6. halojones

    halojones Registered User

    May 7, 2014
    #66 halojones, Oct 18, 2014
    Last edited: Oct 18, 2014

    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 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...!
  7. drummergirl

    drummergirl Registered User

    Jul 4, 2012
    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
  8. halojones

    halojones Registered User

    May 7, 2014

    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, 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 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...
  9. Oxy

    Oxy Registered User

    Jul 19, 2014
    #69 Oxy, Oct 20, 2014
    Last edited: Oct 31, 2014
    Yes Drummergirl, that would be great-I am all in favour for us all to contact politicians.
  10. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    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
  11. clareglen

    clareglen Registered User

    Jul 9, 2013
    Very good idea.
  12. ZoeEdavis-1992

    ZoeEdavis-1992 Registered User

    Oct 20, 2014
    It feels so good to know im not the only one!!!
  13. bez19766

    bez19766 Registered User

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

    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.

  14. drummergirl

    drummergirl Registered User

    Jul 4, 2012
    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
  15. chick1962

    chick1962 Registered User

    Apr 3, 2014
    near Folkestone
    Woohoo progress well done you x

    Sent from my iPhone using Talking Point
  16. lillybo

    lillybo Registered User

    Nov 10, 2011
    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
  17. Tiz

    Tiz Registered User

    Feb 6, 2009
    SW England

    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
  18. Gillybuns

    Gillybuns Registered User

    Jul 13, 2012
    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
  19. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    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.
  20. bovril

    bovril Registered User

    Aug 29, 2008
    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

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