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  1. Sophie the cat

    Sophie the cat Registered User

    Dec 7, 2014
    I am not sure if this is something anyone else has experienced, but I am getting exceptionally frustrated with the complete lack of support my father is getting from social services. He was diagnosed with vascular dementia about 6-8 months ago and has steadily declined since then.

    The GP referred him to social services, who came round, gave him a form to fill in for Attendance Allowance (which he didn't understand and then lost) and didn't do anything else as my Dad said he didn't need any help (he does).

    I followed up with them, got appointment status so I could sign the Attendance Allowance forms and SS organised a carer to come round for half an hour a day.

    Dad now needs more support and we have been trying to get a second carer visit. SS, however, start every conversation with "he's self-funding isn't he?" and then go on to tell me all they things they can't do and he can't have. The have told me the agency that provide his carers have no capacity to offer a second visit each day, but that just doesn't make sense. If there is no capacity, how do they take on new clients or provide emergency or respite care?

    I live 2 1/2 hours away. My sister lives in Australia. I'm thinking of raising a complaint about the social worker, who seems to be suffering from some sort of inverse snobbery because Dad lives in quite a large house and can afford to pay for his care. Or is it because I haven't given up my job to move home to do everything for myself?

    I'm thinking of asking next time what the problem is - is it us or are all social workers useless and unpleasant?
  2. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    Sophie, I can really identify with your frustration. I also lived a long way from mum and found it very hard to deal with SS from a distance. We had one meeting where SW informed me that mum's needs were insufficient to justify them organising a service. They just gave me a list of care agencies and as I knew mum would be self-funding I just contacted the agencies and sorted out what I wanted for mum without any further SS input. It wasn't always smooth running but I don't think it would have been any easier with SS.

    Unless your mum is in a very rural area there must be more than one agency you could go to. You can check out their quality assessments on the CQC website. I think you can search by region to see who covers her area.

    PS love your username. One of our three cats was called Sophie and she lived a long time.
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I'm quite surprised you even have contact with a social worker if he is self-funding: I saw neither hide nor hair of one (expect when Mummy was in hospital), although I know that can vary by LA.

    If your father is self-funding then I personally would cut out the middle man (as in the LA) and arrange the care visits your father needs yourself. You could try the same agency or a different one.
  4. Anotherdamnlol

    Anotherdamnlol Registered User

    May 2, 2015
    Forget Ss organise it yourself. There will probably be lots of care agencies around.
    Maybe also look at care homes too? If you're far away you may feel reassured he is somewhere safe 24/7.

    Do you have Lasting Power of Attorney?
  5. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    I would forget complaining about the social worker as the funding question is a really relevant one for her to ask in terms of what she can provide. Providing respite and emergency care is very difficult, there are so few places and so little money, even if self funding it is hard to find a bed.
    Things are likely to deteriorate and living in a big house is possibly going to be a problem, unless you are considering live in carers which will be extremely expensive.
    I would seriously consider moving him closer to you, not so that you can look after him yourself, I wouldn't wish that on anyone. But so that you don't have to travel so far when there are crises. Which there will be.

    Sorting things out for your dad in order that he can continue to live at home is going to eat into your time considerably. If he can go into residential care you won't have to do this, if he moves closer to you it will take less of your time. If he has complex health care needs you may get funding for continuing health care, regardless of how much money he has but this will still take a lot of your time, my mum has had this for a few years due to her extremely aggressive behaviour but it is stopping now because although she is doubly incontinent, can't walk unaided and has to be fed every mouthful of food and drink, she is now not classed as needing the funding as she is incapable of lashing out or being violent. Even being fully funded and with very sympathetic social workers I had to go every week to support Dad, sometimes twice, which was a round trip of some seven hours.
    We are extremely fortunate that mum was a saver and that she can pay for what she needs. I have no idea how we would cope if not.
  6. Angela T

    Angela T Registered User

    Jul 13, 2014
    Sisiermillicent : I don't know that live-in carers are always more expensive than many CHs...? It is true that care by the hour (around £19 per hour) quickly adds up, but live-in care 24/7 starts at around £2,200 per month - it increases if there are complex care needs, and you provide food and pay utility bills for the live-in carer...

    But I am now paying over £5,000 per month for the NH... so it would have been cheaper to pay for 24/7 care for my mother in her flat.

    Sophie : You should be able to organise carers to come in for your dad (without going through the SW). There are plenty of agencies that provide care by the hour. And if that is not enough, you can look at 24/7 live-in care or a CH/NH.

    If your father lives in a large house, then he could accommodate live-in carers - own bedroom, separate bathroom and living area etc...

    The problem I found is that when you live far away, it is difficult organising (and supervising) care at home or live-in care. If you live nearby, and visit frequently, it can work well...

    You do need to keep an eye on things. If you have carers coming in, it is also better to remove valuables etc...

    But if you are self-funding, the decisions are yours to take, not the SW's.

    I hope thing work out... it is difficult doing all this from a distance.
  7. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    #7 Pickles53, May 5, 2015
    Last edited: May 5, 2015
    Agree with sister Millicent and others that distance adds another level of complexity. I spent a lot of time going back and forth and chasing people up on the phone. That's the main reason we never looked at sheltered housing or care homes where my mum lived. Her bungalow was quite well set-up but as her mobility and dementia problems became worse she became very isolated and lonely. It was in many ways the little things that were the hardest to fix. She would constantly phone me because she had lost something in the house and wanted me to tell her where it was, or because the TV had gone 'wrong'. Poor neighbours must have got very tired of me phoning and asking them to go down and reset the TV because she had pressed the wrong button again as they were all quite elderly themselves.
  8. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    I first found the "SS" as they should be called very unhelpful....but when I eventually got the Community Nurses to come round to the fact mum was ill, (mother declined all help as she said she was OK) it was only when she fell again and was eventually diagnosed, but then the CN turned their backs again as she was not wanting memory pills. Eventually got thro' to SS and we got things started, she did have a social worker, but she left so after a new one.. You just need to keep on at them
  9. Pete R

    Pete R Registered User

    Jul 26, 2014
    I wouldn't say "all" but from my experience so far I haven't met one that has been of much help.

    I agree that if you have the funds then sort the care side of it out yourself however I would strongly advise that you do make a complaint against the SW and push for more SS advice/input. It is always better to have things officially recorded along the way as you never know if you will need them in the future.:)
  10. Sophie the cat

    Sophie the cat Registered User

    Dec 7, 2014
    Thank you all for your comments. I do have LPAs for Dad (finance and health). To be honest, when he gets to the point of needing to be in a care home that will be relatively easy. I will move him near to me, where there are several good nursing homes providing dementia care within easy visiting distance.

    It's this "interim" stage, when he needs more care than he is getting but not to the level where he really needs residential care.

    I will contact the care agency direct myself. The SW keeps telling me they have no capacity to provide further care, but that makes no sense to me. I will find out!
  11. Anotherdamnlol

    Anotherdamnlol Registered User

    May 2, 2015
    Do consider moving him while he is still not entirely helpless. He will settle in CH quicker and better and you will enjoy the last months/years of the real him. Much better to do in a planned way than when in a crisis.

    Good luck.
  12. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    I do so agree with this. Alzheimer's is so unpredictable, better to make a move whilst parent is moveable/tractable. If you can do it, don't miss window of opportunity as you do not know if he will have mood changes/agitation and be resistant. I spent the last year as a carer wishing with all my heart that I could get my Mum into a home, I used to go on and on about it. Eventually I had to, against her will and and with a mental health nurse. Regrettable but was the only solution.
  13. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    Reading this thread with interest for a few reasons:

    - Dad has just been diagnosed with Vascular Dementia
    - He doesn't think he has a problem
    - No help yet offered - just a 'phone call within the next two months' and a GP check within 12 months
    - I suspect any help we do get will be 'self funded' and I'm not at all sure how this works and I understand there's a cap in place now for this
    - I too am in Nottinghamshire

    All this is so overwhelming I don't know where to start first - all I know is that I'm so bloomin' tired! Work, running both dad's and my home, husband, kid and dad with dementia equals one pretty hectic life. At this moment in time there's nothing more I'd love more than eight hours' sleep........
  14. Dustycat

    Dustycat Registered User

    Jul 14, 2014
    North East
    SS Weren't interested in my parents as they were self funding but for my own peace of mind I has SS assess them as I wanted them at least registered as vulnerable adults. They wrote me a comprehensive assessment then closed the case. I got a bit more help from the CPN but again they expect you to sort it all yourself if you are paying. Xx
  15. jeany123

    jeany123 Registered User

    Mar 24, 2012
    We have had three SWs and they have all been helpful and pleasant and did their best for us,
  16. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    After the initial contact following Mum's first stroke with the SS and the Community Matron (who I will never allow in my parents' house again) I decided I wanted as little to do with them as possible. So far I've managed to keep them out of the picture, however I am lucky that I live just ten minutes away and am no longer working so that I can care for both parents.

    One piece of advice I can offer is, if you're still needing to apply for Attendance Allowance, contact your Dad's local branch of Age UK. They were flippin' BRILLIANT helping us with the forms for both LPA and Attendance Allowance. They know exactly how to word things so you have the best chance of getting the award. We are now applying for the higher rate for Mum and Age UK are sending someone to help with that next week.

    They might also have some pearls of wisdom for dealing with your other worries so do get in touch with them asap!
  17. Kipster

    Kipster Registered User

    Oct 29, 2017
    My Mum was in (in Derbyshire) a similar position but experienced a bout of severe confusion, due to a urine infection. I contacted adult social services who came to do an assessment. They have just provided 6 weeks of free support from their dementia reenablement service ( 3 visits a day) and have come up with a care plan. My Mum is self funding but they are finding a care company through their brokering service. We have also had help to apply for attendance allowance (which is a non means tested benefit) and pays between £50 and £80 per week if allowed ( you don't have to declare income or capital but do need to establish support needs) . I suggest you contact your local adult social services and ask for an assessment ( they will only do this if you say you have concerns about your Dad's safety).
  18. Mark_W

    Mark_W Volunteer Moderator

    Sep 28, 2015
    Hi @Kipster just so you know this is an old thread from 2015, so it's unlikely the person you're replying to is reading. I'll close the thread so people don't mistake it for a current live thread.

    Best Wishes
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