feel like i have no support

Discussion in 'I care for a person with dementia' started by Anniebell, Mar 26, 2015.

  1. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Hi everyone a few days ago i posted memory clinic.the story so far ,went to mums tuesday and couldn't find mums aricept in meds box hey ho the carers had taken them to the chemist with her old meds as a new prescription had been delivered(i had left them numerous notes telling them it was a separate script !!!!!) complained to care provider for what good it did ! then on to adult mental health mums in their care for 2 months.The consultant rang me he is posting another prescription and upping the dose to 10 mg, he asked me how mum was ,i told him she had appt for memory clinic he's told me to cancel it and he will review mum in 6 months, she will be in the care of her GP who to be honest i havn't a lot of faith in so will be looking at changing (whenever we ring him and its not often he just rings mum he once prescribed antibiotics for mum over the phone for a chest inf!!! he was the one that told me he didn't think mum had dementia a week before she was diagnosed ) so where do i go now no cpn ,can never get hold of social worker she told me last time i got to speak to her that mum had been referred to dementia care who are they not heard a thing from them! do i just have to struggle through this for the next 6 months with the help of her GP (NOT) or untill something drastic happens sorry for the long post, I know mums not the only one with AD but shes my mum and it feels like no ones bothered ,at the moment you lovely talking pointers are the only ones i seem to get advice and support from thanks everyone love Annie x
     
  2. Dennis Brown

    Dennis Brown Registered User

    Jun 11, 2008
    16
    Worcestershire
    Hi Anniebell, My you are having problems. I have had nothing but good support since my wife(Ivy) was diagnosed with AD 10years ago, is it the area you live in perhaps?, we are in Worcestershire. The only thing I've had changed is Admiral Nurses, they have been moved out of our area and they gave us wonderful support. Have you got Admiral Nurses where you live?, if so get. In touch, they are great!. Keep in touch on the Forum, I'm sure someone will come up with something. Keep harassing the Authorities !,Good Luck, Dennis B.
     
  3. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    332
    rct
    Hi Annie

    Its a lonely old world caring for a loved one..

    The reality is that some gps nurses social workers know less than you do about dementia....
    My dad changes from minute to minute..ss response..we cant run a service that can deal with such constant changes!.
    Well how come i have to adapt to deal with??? Unpaid unsupported..!!!

    I am however taking the system on...even if i cant get my own family to understand..then the rest can look out im ready to shout!..

    We have to be strong..only loudest voices get heard..the gp has a duty of care if they cant see that...tell them..if the ss are too busy in their own little crisis make sure from the bottom to the top they know about yours...its election time...if they want your vote they have to earn it!

    I am a massive animal lover..and right now we treat animals with more care than people with dementia....red tape is fighting the pound...in the meantime people with dementia are being let down..
    From families and friends to the goverment ..

    "Its all well and good throwing money at dementia...all its doing is buying more red tape..and policies that work for the policy makers..
    What we need is help not people to tell us where the help might be available..only to tell us..they cant afford to help us!!!.."

    Feel free to pass that on anywhere.

    I know ive probably not helped you really..but i hope the fact that your not alone..is a comfort!
    There endeth the rant!




    Sent from my GT-I9505 using Talking Point mobile app
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    5,901
    Female
    Scotland
    Since you are getting faster help from the consultant than the GP dont cancel the Memory clinic!
     
  5. dathan1

    dathan1 Registered User

    Mar 26, 2015
    1
    New to all of this

    Hello everyone. I am new. Moved in with my mother in December. My brother and my sis, and I were worried. Now that I am here I see the full depth of this illness. I haven't lived at home in over 30 years. I'm am 51, I have MS and I use a wheelchair. I just want to talk. I am checking into support groups because I have no idea what to do or how to do it.. I just want to make sure she is safe, and content. We get along fine and I am so glad that I moved in to assist her. She was always so quick witted, and sharp and the change is difficult to watch. It seems most of you are from the UK, I am in US. Is that ok?
     
  6. marionq

    marionq Registered User

    Apr 24, 2013
    5,901
    Female
    Scotland
    Hello there in the US. I think the main issue will be over knowing what the provisions are in the States for dementia. I'm not sure if anyone has ever told us on this forum. If you are privately paying it will be much the same as the UK I imagine but what is available for people on allow income?
     
  7. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    hi Dennis i don't think we have admiral nurses in my area but will start investigating. I'm glad your getting good support for your Ivy and i hope it continues for you its a pity that all areas are not the same im going to keep harassing the authorities like you say and keep in touch on the forum thanks for taking the time to reply Dennis love to you and your lovely Ivy Annie x
     
  8. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Hi Dathan its perfectly fine that your in US talking point has been a godsend to me and where ever we come from were all in this together take care of yourself and your lovely mum Annie x
     
  9. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    HI Marionq i was thinking of not cancelling the memory clinic what can they do if i turn up with mum there not going to turn her away are they ?Thanks for your reply Take care Annie x
     
  10. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    I agree with everything you have said think i need to start making a noise like they say its the squeeky wheel that gets oiled hope you feel better after your rant take care Anniex
     
  11. marionq

    marionq Registered User

    Apr 24, 2013
    5,901
    Female
    Scotland
    I doubt your GP would do this. What would be his explanation? I am very suspicious of his telling you to cancel. My guess is that when you turn up you will be expected and hopefully helped. Change the GP when you get the chance.
     
  12. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Hi Marionq
    im going to change mums GP just need to coax mum has she has been at this surgery all her life might tell her that one is closing and we need to find a new one, them little white lies again!!;)
     
  13. Essie

    Essie Registered User

    Feb 11, 2015
    563
    Hi Anniebell, I have to say I agree with Marion and henfenywfach that you need to make some more noise and get heard - as you've said yourself it's the squeaky wheel that gets oiled first!

    I would go to the memory clinic too and when you're there try and get as many contact names and numbers as possible for AS, SS, AC, etc.

    As for the SW being so useless do get back onto them and start again explaining that you have heard nothing from 'dementia care' so who did she speak to there and when and what is their remit and when can you expect contact etc etc . and, from personal experience, keep a record of every phone call, time date and name and what was agreed - it is impossible to remember it all but invaluable when you can pull, seemingly out of thin air, a correct reference to a previous, unfulfilled promise that someone has made. And make a point of holding people to account too, "so you'll call me back within 7 days then, OK I'll make a note of that" All of these people have a job only because of us needing their services, they are not doing us a favour they are being paid to fulfill a function and answer a need, it is intensely frustrating and wearing that we have to badger and pester to receive help but it seems we mostly do! If you don't what to ask for when contacting someone ask them 'what is available, what can you do, what do you suggest' Good luck.

    And dathan, you will be better starting your own thread - click on the grey Post a New Thread button on the upper right of the page when you are in 'I care for someone with Dementia' that way your post will be seen separately and get it's own replies. And as you will see there are members here from all around the world!
     
  14. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Hi Essie thank you for your reply and advice i'm going to start making some phone calls today and i'm not going to let anyone fob me off i know iv'e got a fight on my hands and the gloves are on!!!!! thanks again love Annie x
     
  15. Liz57

    Liz57 Registered User

    Dec 22, 2013
    184
    #15 Liz57, Mar 27, 2015
    Last edited: Mar 27, 2015
    Anniebell I have to say your experiences have been my reality for a couple of years now. Mum might be reviewed by the memory service in a year (or so they've said) and her GP recently left the practice. The new one is sort of OK but hasn't offered any real help. I'm a widow and my now grown up children have moved away - well, one is an university - so I'm am literally doing this on my own.

    I've not had any success with Social Services either as she's self funding. They're great at throwing leaflets at me but nothing concrete. I did eventually get someone from SS out to see me this week - not a social worker but an "enablement assistant" who thought she was coming to tell me about pill dispensers! In the hour we were chatting, mum phoned every four minutes so she had a good experience of my life from 6am to 8pm (and I work too, from home), but no help as such.

    One thing she did say which made me very cross. I know mum will be self funding and I have no issue with that but as a result I've had no help or support for me at all. I mentioned that it was months before I realised mum was entitled to Attendance Allowance and to a reduction in Council Tax and nearly a year before I could fathom my way around the LPA paperwork as mum wouldn't pay ("too expensive, even if it is a good idea") and I simply didn't have the £1,000+ to pay the solicitor. She said if mum hadn't been self funding, I'd have had a benefits check and help with getting the LPA (not financial but at least someone to talk me through the process). I'm really cross that I've had no guidance or support to look after her simply because she's deemed to be self funding!
     
  16. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,991
    Suffolk
    Liz, that solicitor was trying to rip you off! You can do LPA on line for £110 each. They are not difficult, help is provided. You can also get Alzheimer's Society, ageuk, CAB and others to help you for free. You should have been told, on diagnosis to go to one of the societies who would have told your entitlements.
    I find your treatment appalling, but all too common these days.
     
  17. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    )
    Morning Liz i can imagine how cross you are,self funding or not(mums not by the way))we should all get the same advice and support the only thing the consultant asked was if we had POA and offered to sign it for us as a witness (wonder how much he would have charged us for that then !!!) my mum gets attendance allowance found out about that from a friend at work.it seems to me that even if your not self funding they give you as little info as they can get away with and if you keep ticking along and don't rock any boats they are happy. Something needs to be done whatever our financial situations we all have loved ones with this terrible illness and we ALL need support and help to carry on like iv'e said in an earlier post cant wait for the candidates to come knocking they will wish they hadn't Take care Liz love Anniex
     
  18. Liz57

    Liz57 Registered User

    Dec 22, 2013
    184
    Thanks but I did go to Age Uk and it was their solicitor who quoted £1,000! I did it myself online in the end and am now in the process of waiting for it to come through. I couldn't get mum's GP to sign it so had to go down the route of finding a family friend of mums who "certified" it. In doing that you have to have people to inform so that they have the opportunity to object and we're waiting for the statutory objection period now. I had to pay the fees to register both and hope I'm going to be able to claim the cost back from mum once I've access to her bank account as at the moment, it's on a credit card that I can't afford (along with her day care fees - long story!). I'm hoping that as soon as it comes through, I can book her in for a respite break as I'm on my knees now but more importantly, have to collect daughter from university at the end of this term which will mean leaving mum alone for two days otherwise.

    Onwards an upwards.
     

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