Visited day care centre

Discussion in 'I have a partner with dementia' started by Trisha4, Jan 15, 2016.

  1. canary

    canary Registered User

    Feb 25, 2014
    9,836
    Female
    South coast
    Ah, I think the confusion might be mine ........
    I had assumed that you were still of working age. Once you reach state pension age the rules are different.
     
  2. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Hi Trisha

    Please take your husband to the day care centre. If a nurse or carer could meet him at the door I believe this would help him. I spent years trying to get day care. I get it once a week now for 4 hours and it is a life saver for me. He can be awkward and stubborn with me but once I get him to the door, all is well. Please get your head around it and go for it. It is only a few hours and it will be good for him too.

    Take care,

    Aisling ( Ireland )
     
  3. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Unfortunately, Day Care, like so many other things, can be a postcode lottery. Once John was assessed as being a "Day Opportunities Member", which meant he had moderate/severe Alzheimer's, the cost rocketed from £1.50 a day, to £9 per hour, plus lunch - but I was told his previously paid-for cups of coffee would be free! Woo blooming hoo!

    The "Peer Group Club", only charged £9 for the whole 4 hours, including lunch, but only operated one day a week in our area. Fortunately, John had been awarded DLA, prior to 65, which included a Mobility component, due to his leg and back problems, so this helped, and I also was able to get a little help from SS, after his financial review, but this still cost me a fortune. But I needed his absence, so that I could get a few hours sleep, and occasionally meet a friend for coffee.

    And if the carer receives SRP, then you can't get Carer's Allowance as well. For years I was annually sent a letter stating "we are pleased to tell you that your Underlying Entitlement has increased from £0.00 to £0.00, and will be effective as from 1st April".

    When bathing John became a battle, cos he would kick me, Crossroads said I could have 12 hours of help each 4 weeks, however I wanted it, so I had 3 x 1 hour visits a week. They had a Peoples' Lottery grant, so I only had to pay £22.50 every 4 weeks. But when I needed more help each morning, I was charged about £18 an hour, with a minimum of half an hour, and extra at weekends.

    I found out from Martin Lewis' site about getting the Council Tax Reduction, and managed to get this backdated for about 6 years, but until I joined TP, I was paying £15 weekly for incontinence pants, as our area only supplied pads. Then I found out that some folk in other parts of the country received both.

    After several l-o-n-g conversations with the Incontinence Service, I asked why people in Hull were able to get both, but not in Havering, as surely your waste matter was the same wherever you lived in the UK, and why was this called the National Health Service, when it wasn't applying the same criteria to different parts of the country.

    When they refused to supply pants, I calmly asked for the full address of the Human Rights Organisation, as I felt that John's rights were being violated, due to his Alzheimer's and his postcode. There was silence. So I said that if they didn't know the address, not to worry, I'd contact my local paper for details.

    They said they'd phone me back, and sure enough the next day I was told that "thanks to special dispensation", John was "allowed" one packet of 10 pants a week. I thanked them but said this was only equivalent to one and a half "accidents" a day, whereas I'd been catering for at least 3.

    I got 2 packets of the pants. ;) But everything was a struggle. I found out that if you were sent to a Care Home from hospital, your fees were paid, and you get to keep your State Pension in full. If you went for respite, and SS decided it was in everyone's best interests that you should stay there, the Council fee was charged, the Local Authority would pay the Home directly, and then you paid the LA your SRP, less about £25 pocket money, plus half your private pension. That's what we did.

    My friend's husband, in Plymouth, was sent from hospital to a Home, and she was told he had 3 months to live. Nearly 3 years later he is still there, they haven't paid a penny, plus he gets to keep his £135 a week pension in full.

    But if you choose for someone to stay in the Home, you could be charged several hundreds of £s a week as a top-up fee, in addition to the council costs, whatever your savings. Then I discovered there were several expenses that could be taken into account, if you knew your facts, and were prepared to do battle with the LA. I battled, because otherwise, I just couldn't have afforded it all.

    It's a real labyrinth out there and you need the equivalent of a degree in Einstein-ism to cope. And all this whilst caring for your loved one, and breaking your heart during the process.
     
  4. Mal2

    Mal2 Registered User

    Oct 14, 2014
    2,967
    Enfield
    WOW!!! What a lot I've learnt in a few minutes. Scarlett

    I agree everything is an uphill fight. When Stan became incontinent., I bought the pants, pads, etc that he needed. I did find out that the council supplied yellow bags and there was a special collection every Thursday, for soiled pads and sharps, which were taken away to the incinerator.

    Last year I had a letter from the Council informing me this service was to be stopped, and soiled waste items were now to be put in the general refuse bin. Money saving I presume. When I challenged this they said the Department of Health has deemed these items were NOT a health hazard. I used to work on a Care of the Elderly ward, if one of the patients had diarrhoea, we had to transfer them to a side ward, away from the other patients. So is this NOT a health hazard, putting soiled waste into land fill? I was so mad I wrote a letter direct to David Cameron - lot of good that did. I did get a letter advising me how sorry the PM was to hear of my husbands poor health, I bet he never even saw my letter.

    Our local MP wrote to the Council, on my behalf about this . They did reply to him, but, he said they were not very forthcoming or helpful on the matter. I thanked him for taking up the matter, said I knew they would be of no help. He told me, however, they had assured him the soiled waste was incinerated.

    I replied asking him the following 2 questions:

    1. Are the Council now saying that there are no longer land fills and all black bin refuse is incinerated? Can't believe that.
    OR

    2. When the refuse gets to the tip, all the refuse is searched to find the soiled waste to be incinerated - I think not. Needless to say I had no reply. So much for the Council assuring him the waste was incinerated - they just lied.

    By the way the yellow bags containing sharps, dressings etc and are still collected.
     
  5. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    What an absolute nightmare for you, and such a palaver to get an answer, to a question. Sometimes I think that Carers are just supposed to get on with it, not complain, don't ask any questions, and for heavens sake, don't take up valuable council time by wanting anything clarified!

    One of the reasons that I stay on this site, is that I want to help others, especially those that are in the position I was in, a few years ago. I would have given both my right and left arms to have got answers to the zillions of questions that I had, prior to discovering TP.

    I've lost count of the number of friends, and friends of friends, who I've advised about the Council Tax discount, who, like me, knew nothing about this. And as everyone caring for a loved one knows, every bit of financial help you can get means more disposable income to pay for day care, or whatever.

    I am really angry :mad::mad::mad: about the way care has become a postcode lottery. Some people seem to get unlimited help for nothing, or next to nothing, whereas others are having to empty their piggy-banks at an alarming rate. And when you are worn out from caring for someone 24/7, it doesn't leave you with much time, or energy, to look into things, that are available.

    Thank God for TP! :)
     
  6. Mal2

    Mal2 Registered User

    Oct 14, 2014
    2,967
    Enfield
    #26 Mal2, Jan 17, 2016
    Last edited: Jan 17, 2016
    True Scarlett

    Re the Soiled waste not being collected to be incinerated. My brother lives 3 miles from me, and his Council still have this service. As you say it is postcode lottery. I think we are fighting a losing battle. I bet the people we are battling with are NOT carers. If they are, they probably know and have all the contacts to get things done. :mad: M xxx :)

    Fortunately, I was advised by the Doctor's nurse at the memory clinic about C.Tax, and she also helped me with the forms for the Att. Allow. (They were really helpful at our clinic. ) She has now retired, plus in 2014, they discharged Stan, as he was unable to complete the tests. Although I heard from someone recently, that they have stopped doing the tests altogether, now. We used to go ever 6 months. Another money saver, I suppose.
     
  7. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Our council has just introduced 'skinny bins' half the size but still only emptied once a fortnight but they have also introduced the yellow bag scheme for nappies and I presume I incontinence pads etc. presumably before the yellow bags all the soiled waste that went in the bin went to landfill.

    Reading Scarlett's post reminded me that we're still paying all of Bernard's pensions including his private ones towards his CH fees and I haven't had a reply to my letter querying it, must chase it up.


    Sent from my iPad using Talking Point
     
  8. Mal2

    Mal2 Registered User

    Oct 14, 2014
    2,967
    Enfield
    We have the skinny bins, but, still quite big really about 4 ft. (We had the choice of them or large, but, they were massive). We have no problem with the bins, they collect every Friday, for all three, Recycle, garden and refuse, at different times, all done usually by mid day. Just don't understand stopping the yellow bags. That was for diapers too, but, I've no idea if many mothers knew they could have this service.
     
  9. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    If you're not self funding, you shouldn't be paying all of Bernard's private pension towards his fees - only half. This is stipulated in the CRAG report (on the government's website). This is 116 pages long, and I could win Mastermind answering questions on it. ;) Even then, there are certain things you can query, as the spouse at home, should not be left eating stale breadcrumbs!

    Does your LA pay the fees to the CH, and then you are charged by your LA? If so, they are allowed to take all his State Retirement Pension (less about £25 "pocket money"), and half of his net Private Pension. My LA first calculated it on the gross figure, but I soon put them right. ;)

    Also, CRAG states that if the person in Residential Care contributed the most to the family budget, then you can get the pocket money, or personal allowance, increased to cover certain things like life insurance policies for the person in care.

    Also, if the person in care gets Attendance Allowance, this ceases after 4 weeks. But if they received DLA, they are still entitled to receive the Mobility Component, though not the Care Component. Unfortunately, not everyone is aware of this, and I've known people cancel the whole DLA, and then not being able to get it reinstated.

    Remember, most of us are from the generation that paid into the system for decades, thinking that we'd be supported from the cradle to the grave, only got a few bob Family Allowance for the second child, nothing for the first, and are not always savvy on what benefits are available now, and, even worse, think we shouldn't query anything, and there's something tainted about getting any form of financial assistance.

    Back in the late 1990s, John's GP looked at me in amazement when, in spite of his severe back problems and a replacement knee, I said that we didn't have an Orange Badge (which was prior to the introduction of the Blue Badge) or claimed anything for his disabilities. And I said this in quite a proud way!

    In those days the GP could complete the (very thin) forms for you, which he did. Nowadays the Attendance Allowance booklet (which I've completed numerous times for people at the CAB, where I volunteer) is only slightly smaller than War and Peace!

    If anyone wants any help, and doesn't want to post it, please send me a PM, and I'll be only too pleased to assist. :)
     
  10. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    #30 Jinx, Jan 17, 2016
    Last edited: Jan 17, 2016
    There is some very strange wording on the web site about paying extra care home fees (bearing in mind we're in Wales) which implies if your partner wasn't giving you half of his private pension before the need for care arose they will take it all. All our accounts were joint so I would have thought by default I should still get half. A battle to be had methinks! xx
     
  11. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Well Wales is still part of the UK, n'est pas? But definitely, Bernard should only pay half his private pension. I'll find the linky and PM you xxx
     
  12. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
  13. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
  14. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    ........ and from the Independent Age Fact Sheet:



    Did You Know .. you have a right to a place in a home which ‘meets your needs’, as specified in your care plan or written assessment, even if it is in a different country. You can choose a care home anywhere in England or Wales, or by arrangement in Scotland.


    Did You Know … if you and the council agree you need to go into a care home and they are helping to pay the fees, they must arrange it if you can’t do it yourself and no-one else will act for you. From April 2020, you will be able to ask the council to arrange your care home placement even if you are paying all the fees yourself. You are more likely to choose a home you like if a relative or friend helps you.
     
  15. pussygalore

    pussygalore Registered User

    Oct 25, 2015
    17
    I too was taken with my husband and our memory nurse to view the day centre last week. It was a lovely place and the staff where very kind and helpful. I too felt sad at the thought of leaving him there for a few hours and also was tearful. They also recommended that we start with 1 day a week. I just hope Bruce will be o.k. He was very quiet at the time of looking around but I think he was a little bit confused and he seemed quite keen when I explained to him what the day centre was but I am keeping my fingers crossed that he does not make too much fuss at not having me around that I have to go and collect him because at the moment this little bit of respite is the only thing that is keeping me sane. I agree what a horrible illness this is. Good luck to you and I hope that it all goes well. I will keep you informed from this end of whether Bruce has settled in. Its just like your child's first day a school. I shall probably sit a home all day worrying for the first few visits waiting for the phone to go to ask you to collect him because he is so unhappy. I hope not.
     
  16. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Scarlett, thank you for this, I do need to have the discussion as they are taking the lot at the moment. xxxx


    Sent from my iPad using Talking Point
     
  17. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent

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