1. canary

    canary Registered User

    Feb 25, 2014
    10,694
    Female
    South coast
    The problem is that any organisation dealing with dementia is so strapped for cash that any relative who shows any sign of caring is viewed as a resource. We are not seen as people who need supporting ourselves.
     
  2. Cazzita

    Cazzita Registered User

    May 12, 2018
    505
    None of it is anywhere near good enough and I suspect it never will be. Will this Green Paper help any of us in time? I very much doubt it but we can live in hope!
    Mum has care starting in 2 weeks - she is self-funding and I hope that the standard she receives is good enough.
    What can we actually do @kindred ? Someone well known needs to speak out publicly and we need to have some mass demo somewhere to shout our disgust :(
     
  3. farmgirl

    farmgirl Registered User

    Jun 2, 2014
    64
    shrewsbury
    That happens alot when your self funding
     
  4. vicx

    vicx Registered User

    Sep 11, 2017
    17
    Could someone please explain the social service system to me. When mum was diagnosed our details were passed to various professional bodies who can support us. At the time they came in turn, and gave us their speech, and reassured us we were not alone. Great emphasis was put on looking after the carer. Skip a year and I'm needing some help, we were advised to future proof by gp and look for appropriate accommodation. This was great advice and I set to work, However the extra care housing has to go through social services for a home assessment, this has a huge waiting list, so I ask for carers assessment, this to has a waiting list. So I ask the question, and don't get a satisfactory answer. I thought you were big on looking after the carer, so no one ends up in crisis? Apparently their short staffed and growing caseloads.
    Unless my mum is wandering inappropriately clothed, ringing the emergency services or burning housedown , we have to just to on waiting . So much for looking after the carers, I'm wondering who'll go first, I've got a good mind to go out tonight inappropriately dressed . Not sure anyone would notice.
     
  5. Cazzita

    Cazzita Registered User

    May 12, 2018
    505
    This is awful that people have to get so desperate/beyond desperate to get any bloody help. Hope you will be okay and get through this hellish system. There MUST be a way through. Hope someone can offer you advice as I can't as just beginning this awful, journey and yet to get to this stage. Big hugs @vicx xx
     
  6. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    But at least if you're self funding you can get on and do it, if the LA are (supposed) to be funding you can wait weeks just for a social worker to return a phone call let alone do anything.
    The myth that LA funded people get a better deal from social services is just that, a myth.
    In the case where there is no family or anyone to take responsibility then they have to step in but If they can "palm it off" onto a family member that's exactly what they do in my experience self funding or not.
    Social Services told me I had to find a care home for my wife even though she's Section 117 funded so they're paying and told to do it as soon as possible, the list of care homes was laughable one had been closed by the CQC and the building was for sale, a couple more said they wouldn't take anyone who'd been sectioned and all wanted a top up, £800 per week was the highest, like I can afford that.
    Sadly "crisis intervention" seems to be the way these days, social services only became interested when my wife ended up in the cage in the back of a police van and was sectioned for 6 months, even then they weren't much use at most of the case meetings and best interest meetings the social worker would have phoned to say she wouldn't be able to attend.
    Self funding means it's all up to you, LA's even when they only partially fund still want you to use homes or companies they have contracts with and you have to chase them up before you can do anything, LA funding (even partial) isn't a golden ticket to help, that, sadly only comes with a crisis.
    K
     
  7. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    @vicx
    I'm sorry to hear you can't get support, even though you've planned well in advance and have a right to it. Tragically, it's all down to resources. As others have said, councils are so short of money and staff that only emergency situations get any attention in many if not all areas of the country. I say this with a heavy heart, both as a long-time carer for my mum, and as an ex social worker who had the privilege of doing the job when there were both more resources and less box ticking.
    I understand your anger - you're right, the system isn't good enough, it's nowhere near fit for purpose.
    I hope you get somewhere soon - are any other professionals involved who could perhaps put pressure on SS?
    All the best
    Lindy xx
     
  8. vicx

    vicx Registered User

    Sep 11, 2017
    17
    Thank you, at least i can rely on all you wonderful people for support. Mum is self funding and we did look into a private extra care housing facilities, it looked perfect ......until the lady said 'we don't take dementia ',( it so difficult sometimes to be calm) i in a calm manner asked where this was stated in the literature. Apparently it isnt , maybe that should be adjusted, i suggested, save all these desperate people looking for help in future. So everywhere else is SS enabled.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,694
    Female
    South coast
    If your mum is self-funded @vicx then you can indeed start looking for extra help, but (as you have discovered) not everywhere accepts PWDs. Dont try and force the issue - if they cant meet the PWDs need then they will send notification to leave and you will have to find somewhere else, possibly quite quickly. It is always worth asking what behaviour they will not accept as this will give you an idea of how long term it will be.
     
  10. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,749
    Female
    I'm so sorry to hear about those who are struggling to get support. To add to the comments above - as Kevin rightly says, at least if you are self-funding you can make your own choices. The first social worker who saw my mother was a lovely guy, he was brought in by an alert from her GP. But his problem was that he believed my mother when she said she was fine and didn't need any help. He didn't know during his assessment that she was self funding so it was in SS's interests to believe no action was needed. He immediately closed her case.

    The second social worker I dealt with (about 9 months after the first, when she had deteriorated considerably) openly said that they only operate crisis management. They wait for things to deteriorate to a point where they have to take action, and then provide the minimum possible amount of care, aiming to keep the PWD in their own home for budgetary reasons. She took so long to do her assessment that I'd already arranged private carers - 4 hours a day. The SW said it was far better than anything she could offer.

    I am very relieved that my mother is able to self-fund, and if all her money gets eaten up in her care costs as far as I'm concerned that's what it's for. I just hope she doesn't outlast her funds and I don't have to find out what it's like working with the LA, which has just announced it is cutting its services to the legal bare minimum.
     
  11. kindred

    kindred Registered User

    Apr 8, 2018
    2,245
    Ah, what can we actually do. Well, the culture these days is that there is often short term outrage expressed, such as a mass demo and then life passes on to the next issue. Harnassing that to action is the difficulty. I think that the biggest change would come about if we stopped referring to the whole thing as memory problems - this may be true for the first stage but it is incredibly misleading therafter. Gives no picture of what we are dealing with. Thank you, I do hope your mums care works well. My OH is well placed in his nursing home. warmest, Kindred.
     
  12. vicx

    vicx Registered User

    Sep 11, 2017
    17
    Hello, following on from my moan about social services, they have contacted me today with a date for an assessment. When i briefly explained situation, she commented she may need a care home. I felt a bit shocked, i am now panicking maybe i've got it all wrong, not being able to cook and turning the fridge off, buying only dog food and placing 12 bowls full on the floor, maybe thats normal and i am being ridiculous. Mum stays with my sister or i for 7 to 8 hours every day so how she really copes at home is the snippets we've witnessed. SS will ask her to perform some tasks at home, so i will have to wait and see what they think.
    I need to take myself in hand, and remember i cannot stop the progression of this disease so need to future proof the situation, and make sure she has the best care, i need help to be able to provide this so will ask. Guilt is a powerful emotion, but in this case i need to push it aside.
     

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