I am beginning to get rather annoyed....

Discussion in 'I have a partner with dementia' started by Frank68, Nov 6, 2017.

  1. Frank68

    Frank68 Registered User

    Jan 28, 2013
    76
    South Coast
    No, it's ok , it's not with you lot out there without whom I might have gone under long since! The Forum does a GREAT job by enabling some deep sharing and support member to member.
    But we also have some STRUCTURAL AND POLITICAL issues that affect us all - most severely - and I find it hard to find anywhere in the Alzheimer"s Society pages where are is room to express opinions on such issues. It is telling that rules banning such comments are banned under a notice dated Feb 2015 which points users towards a heading "Alzheimer's Society Campaign Resources" dated January 2011 and which (despite the revised website is "no longer available'! So I do expect that this post will be taken down - but I am still posting it because I feel it is important. I would hope nit might be left up at least for a short while to see what others think?
    Political decisions and societal issues affect us all, and I would quote just two examples and without being 'party' political, indeed I think we have been failed by every shade of our political 'representatives'.
    1. Our local Memory Clinic has just been closed down! We have been on the casebook since 2010 and the regular assessments were of great value in gauging the progress of the disease, at least in the earlier years until my dear wife dropped off the scale... Knowing that there was friendly voice and face at the end of the telephone when I got to my wits end was very valuable and resulted in several swift medication changes which were beneficial - to say nothing of easy access to the Consultant. Our nurse (near to tears) told us 2 months ago that the Clinic was being shut down and that in future would provide only an emergency service for the most serious of cases - otherwise our cases were all being handed back to the GP's. We are "discharged" - but to - ?? Our overworked GPs? We are actually fortunate in that our GP is a candidate for sainthood and really understands the Disease and the issues, but I truly fear for her under this added burden.
    2. The cost of residential care hangs like the sword of Damocles over all of our heads. Governments order Reports and Commissions - then take no notice of the results! I long for ANY PLAN that might help know what I am in for in the long run - meanwhile I am paying £3,250 per month to a Care Home! We are fortunate in that our Son who has done well in his career loves us and gives us £1500 per month towards that cost. The remainder comes from my wife's pensions, a small annuity and my own pensions. Our only option was to place our home "in hock" , pay the Council's 6% p.a.Interest on the loan plus administration changes ++, and effectively rule out the possibility that I might want to move home at some stage.

    Now, I write to my MP, but he rarely answers except with flannel. I have adopted a Personal Rule never to refer to my wife's condition as anything but 'Alzheimers DISEASE' to underline that is a HEALTH issue. These are however, small actions by an individual and am just making a plea here on this particular Forum page that the Altzheimer's Society really needs to lead / enable a more campaigning approach - don't we need some structural and political action as well as the words of comfort and advice? We need to make ourselves and our most unsatisfactory situations seen and heard.
    Frank
     
  2. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    1,948
    Ireland
    I am wondering why both you and your son are having to contribute so much to your wife's care home fees? Plus, the marital home should be disregarded in the financial assessment, while the spouse is still living in it.
     
  3. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,471
    East Sussex
    I on the other hand am wondering where you found such a cheap home on the South Coast. I believe there are 2 at £750 ( one if which you wouldn’t out a dig in never mind your loved one). One at £850 (same comment) & the remainder are over £1k, not all good & we have loads of them around here, an absolute glut, but still the choice is not easy :eek:

    We have no memory clinics here, Mum was diagnosed by a “dementia specialist” GP at her surgery & that’s all she has access to. He’s nice enough, but a chocolate teapot for all that. I asked for a review, 2 years after her initial diagnosis & was told there wasn’t any point :eek: She’s got Alzheimer’s & it’s going to get worse & what difference does it make where she is on a scale :rolleyes:

    I’m pretty much resigned to having to pay when we hit that stage, it may be “unfair”, but there’s no money in the pot to pay the levels that would be needed. The NHS is more or less bankrupt & can’t go any further. Taking over care would ruin it completely

    Sure I’d love the private homes to be regulated on prices, but with no real competitor that won’t happen. Demand outstrips supply, so prices are high. Standards are not maintained & we are left fighting the regulators.

    It’s not like we can refuse to use the facilities, we need them, so we have no power
     
  4. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,501
    Female
    Near Southampton
    #4 Saffie, Nov 7, 2017
    Last edited: Nov 7, 2017
    I agree with Sam that the fees are not excessive for the south coast. I also agree with Hillbilly that neither you nor your son should be paying towards your wife’s care. Only your wife’s income is included in the financial assessment made by the LA.
    A home where the spouse remains living is disregarded so you have no fears that you will have to sell your house.
    As for your comments regarding the Alzheimer’s role and political agendas, to me, these are nearing the disallowed comments as reflected in the T&Cs
    https://forum.alzheimers.org.uk/help/termsandrules/
    and is not part of the support for which this forum is intended so it might be better to remove them.
     
  5. Frank68

    Frank68 Registered User

    Jan 28, 2013
    76
    South Coast
    Thank you for replying and your comments - and to the substantial number who have 'viewed'.
    Care Home Costs: Yes, at £750 per week these are not excessive and good value for West Sussex - posh it isn't but it is small and the staff truly care for each individual (and their relatives) which for me is the most important factor. But these fees are still nearly £200 per week more than the Hampshire CC Rates and I was told the family would have to pay the top-up. I of course understand that we could have applied for LA Funding and the family home would have been disregarded but only whilst I was living in it and I might not want to live in it for ever but to downsize. Add to the top-up fee the 6% pa charge of the sums advanced, administration charges and the rest and our Son felt that as he could afford it then it was possibly better for the family finances and freedom to what what we want and when we want with the property to go down the route we have. Absolutely take Sam's point that the current NHS budget could not carry this burden - but my essential point is that Alzheimer's DISEASE falls into the Cinderella section of the Welfare State along with much of the mental health and disability sector. Is it the sufferers fault somehow that thy should be expected to pay?
    And yes Saffie - I acknowledged in my post that this isn't really the place for this discussion. But it is a discussion that I would like to have, which I believe ought to be had, and which no-one except the Alzheimer's Society is in a position to enable as far as I am aware. I will happily remove my post to such a place - e.g. a different section of the Forum if one existed. Please tell me if it does and I have just missed it?
    Sam posted: "It’s not like we can refuse to use the facilities, we need them, so we have no power". How correct he is, but the stories of suffering, courage and love unfolded on these pages carry enormous power - and I suppose I feel frustrated that there doesn't appear to be a way of harnessing that power to gain some 'healthcare justice' short of joining a political party - and that makes me shudder!!
    Regards to you all
    Frank
     
  6. Mark_W

    Mark_W Volunteer Moderator

    Sep 28, 2015
    4,036
    London
    Hi Frank, sorry that we're not able to cover this sort of content in depth here on Talking Point. It's difficult because as you say these issues do touch deeply upon all sorts of politics but political conversations can become non constructive and generate arguments. Which in turn distract people from Talking Point's main purpose, which is to support people affected by dementia.

    I think the best direction you could head in is that link that Shedrech points to and also here: https://www.alzheimers.org.uk/info/20016/campaigns which is the general section of our website devoted to campaigning.

    Both of those pages point you to this form: https://e-activist.com/page/6002/pe...46.590859549.1509961459-1631127977.1502269399 which will sign you up to our campaigns mailing list which should alert you when we're asking people to join together and email + lobby MPs about specific issues we're campaigning on.

    Also thanks for pointing out that this notice is out of date, I'll get that updated and pointing to the relevant content on the website.

    Thanks
     
  7. Pete R

    Pete R Registered User

    Jul 26, 2014
    2,046
    Staffs
    Hi Frank,
    I do wish you well with your campaign however I am a tad unsure of what you actually want to change and the alternative you are putting forward.:confused:

    The current system is not fit for purpose and is terribly flawed but your point of not applying for Local Authority help does not make sense as even a little help with Care Home costs is better than none. Also if you are going to challenge professionals or our "leaders" you need to make sure your facts are correct.

    If your wife has savings under the upper threshold then your home is disregarded whilst you live there. If you did wish to move there is scope within the CA2014 for you to do this and retain your wife's share of the money to buy a new home.

    You talk about a loan (Deferred Payment Agreement) from the LA but this is not possible with a "disregarded" property nor if savings are above the upper threshold.

    Your LA's decision to charge interest on a DPA is theirs alone and not dictated by Central Government.. My LA does not charge interest but even if they did it is fixed by law and is no where near 6% and is just over 2%.

    Good Luck.:)
     
  8. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
     
  9. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    I've just gone through the whole process of moving my husband from self funding to LA. I was preparing for a fight-but the LA have just agreed to finance his care ( Hurrah!!!) without moving him, which they had wanted to do. I think we got this result for several reasons-hope these help:

    1)They know I visit several times a week-this is still our marriage( albeit not everyone's idea of one!)-and cheaper homes were outside the county and would make it impossible for me to do so. ( Article 8 Human Rights Act is what you need for that one-the right to a personal/family life etc)

    2) Lots of support from GP/Nurse practitioner/Elderly Care Consultant who all wrote letters stating how it would be against his best interests to move him-that he needs 24 hour care from dementia trained staff-he would suffer extreme distress if moved.The care home were also very supportive.

    3) They knew I'd read up on the Care Act-which states that-if it can be shown that it is in the resident's best interest not to be moved, the LA is fully reponsible for the fees. They cannot insist upon a top up ( although they will try to......)

    4) Our house-and my money-has nothing to do with financial assessment. Yes-I could do with downsizing as I would love to have smaller bills and be mortgage free but-as I took early retirement (7 years) which has severely affected my income-and my occupational pension-I have no intention of losing any more money. I also had a complete breakdown after caring for him at home for over 8 years. This illness has actually cost me more than my husband-even though he was the one with AD. Made that point-backed it up with figures.

    I do get what people say abut the system being strapped for cash-but , as I've worked for the council for around 35 years ( teacher) I'm also well aware of how much is wasted. So I don't feel guilty in fighting for him to have this. We both worked full time all our lives without ever claiming any form of support- until he was diagnosed at 58-and I am not prepared to sacrifice any more of my family's future. Please take some advice-maybe local AD society? -and get the support you are entitled to.
    Good luck!
     
  10. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,733
    Salford
    I agree with Pete's points above. If your wife's savings and half of any joint savings mean she has below the lower limit the LA have to totally fund her care and they have to find at least one place that will take her without a top up. The will take all but £23pw of her pensions and benefits but can't touch your pensions, savings or income or anything else that's in your name.
    You can't enter into a DPA on a mandatory disregard house and the current rate of interest is fixed by the government and I think is 2.65% not 6%.
    As Pete's says under the 2014 Care Act Mandatory Guidance notes the LA is instructed to allow people to downsize or move and use any or all of the person in care's share from the sale of the original property,
    I don't know who's told you these things but they're not right.
    K
     
  11. jennypie

    jennypie Registered User

    Jan 5, 2014
    126
    North yorkshire
     
  12. jennypie

    jennypie Registered User

    Jan 5, 2014
    126
    North yorkshire
    Can I just ask please if you downsize and use your pwd share of the money in the property will that be claimed back at any point?
     
  13. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,733
    Salford
    Annex E in the Mandatory Guidance Notes give this example;
    "Example of where deprivation has not occurred
    Max has moved into a care home and has a 50% interest in a property that continues to be occupied by his civil partner, David. The value of the property is disregarded whilst David lives there, but he decides to move to a smaller property that he can better manage and so sells their shared home to fund this.
    At the time the property is sold, Max’s 50% share of the proceeds could be taken into account in the financial assessment, but, in order to ensure that David is able to purchase the smaller property, Max makes part of his share of the proceeds from the sale available.
    In such circumstance, it would not be reasonable to treat Max as having deprived himself of capital in order to reduce his care home charges."
    So Max (in care) can allow his/her share of the house sale to be used by David and it is not a deprivation of assets by Max. Once you move into the new house it is a mandatory disregard as a partner is living in it. Downsizing doesn't necessarily mean you will release any equity from the house which the LA could count, just buy somewhere smaller but in a more expensive location or a smaller but more desirable property.
    K
    https://www.gov.uk/government/publi...ce/care-and-support-statutory-guidance#AnnexE
     
  14. jennypie

    jennypie Registered User

    Jan 5, 2014
    126
    North yorkshire
    I wasn't thinking of deprivation of assets but when husband passes would there be any claim on the property?
     
  15. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,733
    Salford
    The Deprivation of Assets is in the sense that when you sell the first house, technically, half of the money becomes your husbands, if he lets you have it to buy the new house some people on here say that it could be viewed as a deprivation of assets.
    The guidance notes say that it isn't and it should not be viewed as such by the LA. His share of the new house (and you should put his name on the deeds) will be passed on as per his will.
    The LA will have no claim against the property as you living there means they have to disregard it.
    K
     
  16. jennypie

    jennypie Registered User

    Jan 5, 2014
    126
    North yorkshire
    Thank you @Kevinl thats much clearer now.
     
  17. Frank68

    Frank68 Registered User

    Jan 28, 2013
    76
    South Coast
    Thank you everyone who has responded - I thought I had understood the position but I think I obviously got it a bit wrong... and I need to get some advice. I am particularly interested in Sah's case and that she went back and moved from self funding.
    The trouble is I think that I have been so so stressed and upset at having to give up looking after my dear wife that I have not been able to think straight. I am beginning to surface a little bit now from my exhaustion and I shall follow that up. Worrying about the money on top of everything else nearly tipped me over the edge...
    Thanks to Mark also for pointing me a different direction to pick up on the campaigning issue.
    I think I shall now declare this thread closed.
     
  18. Pete R

    Pete R Registered User

    Jul 26, 2014
    2,046
    Staffs
    You have mentioned this twice on here and also on another thread. The guidance is actually called Care and Support Statutory Guidance.

    Not all of the guidance is Mandatory as you suggest.
     
  19. Pete R

    Pete R Registered User

    Jul 26, 2014
    2,046
    Staffs
    No it cannot,:)
     

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