1. Jude

    Jude Registered User

    Dear Members,

    Recent posts have indicated a growing discontent on various topics which make a carer's life even more difficult. These include such things as wading through Assessments, dealing with the SS, sorting out Respite; dealing with finances and finding suitable Care Homes.

    It seems like it might be a good idea to highlight these issues in a series of articles in the national press. The Panorama programme was excellent and generated a great deal of public interest and outcry a few months' ago. It is perhaps a good time to keep AD in the public eye.

    If anyone would like to suggest a topic or write an article, then please do post your ideas here. Here's a few preliminary headings that we could consider:

    A Day in the Life of a Carer
    The Trauma of Selling the Family Home to pay for Care
    Finding a Suitable and Affordable Care Home

    Please add your own......

    Best wishes,

    Jude
     
  2. Katy44

    Katy44 Registered User

    Sep 14, 2004
    134
    I don't know if this is off-topic - it's more like the ones you mentioned in the medications thread:

    "Of course she's not going to admit she's got AD and ask for help - she's got AD!"
     
  3. Jude

    Jude Registered User

    Dear Katy -

    Sounds like a pretty good title for an article to me!

    Jude
     
  4. Katy44

    Katy44 Registered User

    Sep 14, 2004
    134
    On the days I'm feeling bitter I would re-name it "Do we have to wait until she's mugged to get some help?"
     
  5. Chesca

    Chesca Guest

    Dear all, just me rattling out a few notions

    Howzzzabout we use the 'voice' that is TP as part of a demonstration of the devastation caused by AD and its derivatives, in a published form, following a concerted effort to draw attention not only to victims but also the domino effect - grief, frustration, relationship breakdowns, etc., alongside the positives: the triumphs, the fellowship of carers, the ability and need to laugh, the sharing, the poetry.

    We have, as the President of AS, Sir Jonathan Miller, a man of as many talents as there are threads on this site. The Daily Mail has also been running a series of articles in support of Al's, Tony Robinson of Baldrick fame wrote a moving and critical item about his Mum and the care she received, Anne Robinson (no relation), for all her financial success, went through similar experiences, especially with care homes. These are only a few. If we put something positive together, couldn't we ask that they endorse it............ when we decide what exactly we want endorsing! Couldn't an appeal be made to the producer of Panaroma letting him know that not one ****** in government has bothered to reply to you.

    I think there is a need to dispel the myth that AD is strictly for the elderly, that early onset AD can happen to anybody, regardless of...............well, anything really. Old age ain't for cissies but it's going to happen to most of us, with the help of whoever......... and enough roughage in your diet! The chance is VasD or AD will affect many of us and whatever contribution we make now will be an investment for ourselves, and our children.

    I think we need to explode the minefield that is financial support, for both the patient and the carer, with a view to a National policy on funding - not the present post code lottery. We need clear guidelines, written in plain speak, administered under the smallest umbrella of well-trained people - not the present game of snakes and ladders.

    Howzzzzzabout I now shut up
    Chesca
     
  6. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    I have to own up to having had a reply from the dreadful Ladyman man!

    However it probably was due to me sending a copy of my original rant to our local MP who happens to be from the other side so to speak. No doubt the response would be copied back to close the file.

    Not sure why I didn't pass on this at the time but it may have been due to the fact that the letter failed to answer any one of my points (well - he is a politician so there's no surprise) and it was consigned within minutes of being read to where it belonged - the bin!

    It was a totally pathetic piece of what I believe is called spin - all flowery, no substance and perfectly meaningless.

    Kriss
     
  7. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi troops, I think i can feel a mission coming on,i was thinking along the same lines as chesca using extracts from topics on T/P getting together the real points and needs of carers and those they care for getting them on paper and getting them published also either setting meetings up with MPs S/S mental health DRs nurses in fact anyone who is relevent or issuing papers to them. People in these posistions even with the best will in the world and thier degrees often have no experiance in caring for anyone and the whole ripple effect it has on peoples lives.
    They can offer advice and print leaflets make guide lines but they need to listen to us the ones trying to make sense of the system while we are battling to cope with just getting the people we love through the day.
    I was thinking of asking the next person who comes to see me for yet another talk and assesment if they had even heard of this site and asking them to take a look while they are here do you think that would be ok?
    My daughter has a degree in journalism and she is more than willing to help if you need her advice but shes not in that line of work now.She doesnt take after me as you can tell by my spelling and typing but at least i try. STORM
     
  8. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Hello

    I think the idea is wonderful, but who is going to have the time to orchestrate it?

    It takes me all my time to read the posts, and post the odd reply. I only seem to have a few minutes when I have got Margaret to bed.

    I know that sounds rather negative and possibly even defeatist but it is a fact of life, as life is at present.

    However if someone can get the idea off the ground I am all in favour and will support to the best of my ability.

    Cheers Barraf
     
  9. Jude

    Jude Registered User

    Der All,

    Using the TP forum sounds like a great idea and would actually save rather a lot of work in rewriting. That way, we could use introduction paragraphs and quotes from here, with eveyone's permission, under selected topic headings. Also comments from relevant authorites.

    Does this sound workable?

    Jude
     
  10. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    hi all, I think you are following my train of thought jude,i do think it will be workable if we put our minds together and barraf you are already helping by posting your views here.OOHH listen to me i sound all offical,i dont know if it would work doing the day of a carer because knowing how things go we would all have pretty good days! thats the point we are trying to make any one can cope for a day its the continual grind day in day out. storm
     
  11. Jude

    Jude Registered User

    Dear All,

    Rome wasn't built in a day....... You guys can help make the bullets and I'll fire them in the right direction!! There are also a few other great markspersons [oh, how PC of me..] on TP, who will, I'm sure, join in to help write and edit.

    As Storm says, even the occasional post will help, along with some other good ideas and views.

    Caring takes forever, every day. I'm sometimes lucky to grab a shower twice a day in between all the other essential stuff. However, there are specific times when carers are here or when my parents are happily occupied with newspapers/TV, that I can devote to 'thinking and writing'. These are the times that I can usually get on to TP, although occasionally I have to break off from answering a post midway through. It's like working in a telephone exchange sometimes - I have to keep switching from one topic to another..... This probably keeps the brain cells active though.

    Best wishes all,

    Jude
     
  12. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi all, I think using TP would be a good idea too, providing we edit any names or dodgy bits they wouldn't understand, we should be OK I think ?? Love, She. XX
     
  13. Jude

    Jude Registered User

    Dear Sheila,

    I guess that means cutting the wellies and slingbacks right out, not to mention our dancing section.... Oh poo...!!

    Jude
     
  14. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Well, maybe not all, we are entitled to a life arn't we? (don't answer that!!) Just any particular bits that could cause anyone a problem I mean. Love, She. XX
     
  15. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Can you leave out the bits where I get stood up, wax my legs under the affleunce of inkahol, have the dodgy tummy from the Chinese takeaway and
    confess to Barry worship, please?

    Magic
     
  16. Chesca

    Chesca Guest

    No, Magic, you can't. Waxing the Chair Legs has already been approved as the title for this tome and is being published at great expense.

    Catch you later
    Chesca
     
  17. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    I much prefer Jude's "Rollos and Rolling Pins"
     
  18. Katy44

    Katy44 Registered User

    Sep 14, 2004
    134
    This is a fantastic idea! How can I help?
     
  19. Jude

    Jude Registered User

    Dear Magic,

    Aw shucks......!

    Jude
     
  20. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi all, Just had a word with afore mentioned daughter she advised getting in touch with someone from society guardian and then submiting afew headings that we put together to see if they are interested in running a artical,they could put together a few snippets from T/P and maybe do interviews with any members who are willing to.She is going to try and find some names and numbers for us is this ok? storm
     

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