1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    I have recently installed a fence and gate at the bottom of the drive to stop Jean escaping and wandering.

    Part of the daily routine is for me to take the dog out before I go to work. As I turned in the top of the drive I heard a knocking noise and the sound of wailing.

    Jean was stood holding the gate, rattling it in an attempt to get it open and waling "I want to go home" over and over again.

    Just for a moment she looked like one of the stereotypical mad women trying to escape from an asylum. The type you see in old Hammer Horror movies from the 60's and, just for a moment, I thought "Am I doing right to try and keep my wife at home and give her the best that I can offer. Would it not be better for her, and me, if I just packed it in?"

    The moment passed, just as the gate rattling and wailing passed but the question still remains.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,584
    Kent
    And who knows the answer Grommit.

    I know Dhiren is frightened to be alone in the house. He`s nervous in case something happens that he can`t handle, he worries I`ll have an accident and won`t return, he forgets where I am, even with a note.

    I know from previous posts of yours, that Jean wants to go home whether you`re there or not, but perhaps if she did have someone with her all the time she might not be as frantic.

    Not much help I know. Just sympathy and sadness.

    Love xx
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    There is no definative answer Grommit.
    Jean could still be saying the same things wherever she was, and whoever she was with.

    It's all in the coping. When you feel that you can both have a better 'quality' relationship in other circumstances, then is the time to think about change.

    I would say "please look after yourself", as only by doing this can you long continue to care for your dear Jean.

    My heart goes out to you both. Stay strong, love n'hugs
     
  4. 1234

    1234 Registered User

    Sep 21, 2005
    43
    bradford
    Grommit i so feel for you, this constant wanting to go home and their anxiety and distress just tears you apart,I have sometimes thought that perhaps i was keeping Trev home for selfish reasons, because i cannot bear to be seperated from him and perhaps he would be happier and more settled in a home, was supposed to be in respite now, but the garden was so unsecure Trev would have been out of there in mins, Are you able to leave Jean alone or do you use a sitting service, still unsure i am doing the best thing but will hang in ther a while, hope you have a easier day and Jean is in a good mood today.
     
  5. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    Thanks everyone for your comments.

    I think you are very right Connie. She would be saying and doing the same things elsewhere . At least I am on hand to offer her what help I can at these times and that makes me feel better.

    1234 thanks. I am tryoing to arrange a sitting service via the Direct Payments scheme. I have bee n turned down by the Social Services and totally ignored by my MP. But I shall not give in.
     
  6. cariad

    cariad Registered User

    Sep 29, 2007
    89
    Hi Grommit, sorry to hijack this post. It's what you said about Direct payments. My Mam's SW has said Carers aren't entitled to them and my mam doesn't have capacity to agree to them. It makes a mockery of the whole principle behind direct payments! I thought they were for people who needed assistance to liv e indepedently in the community (some of whom would have dementia). My Mam is still very capable in many ways e,g able to bake a pie or iron or shop with a friend. I too am going to fight for direct payments or continuing care in the community. I feel strongly that My Mam should not have to pay for help because she has mental health problems. So what I wanted to say was go for it and fight the system all the way!!
     
  7. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    That's the same point that I'm making Cariad.

    I heave read the Statutory Instrument regarding Direct Payments and it does say that only people who in need of the services can apply for them.

    The various guidance documents on Direct Payments say the same thing.

    I have decided not to go through the various appeal stages and contact my MP directly.

    I am now on the 4th E mail as he has totally ignored the other three and not even sent an acknowledgement of receipt.

    I ain't letting this one go. Someone will have to provide me aith an answer as to why some Councils do pay carers and others do not.
     
  8. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    "Am I doing right to try and keep my wife at home and give her the best that I can offer. Would it not be better for her, and me, if I just packed it in?"

    Hi Grommit

    Hummm only you honey can know the answer to this one, but I would say, its not a case of "packing it in", more a realisation that you can do no more.

    I appreciate it is totally different caring for a partner, and I can only speak for myself, but I have to say, I spend so much more 'quality' time with mum since she moved to the NH.

    I am no longer the ‘woman on the edge’ and suffering from so much sleep depravation that it was a toss up between mum and me who actually could remember their own name.

    I am also that person again who has an abundance of patience with her, I don’t go around with gritted teeth coping with the latest disaster.

    Mum, she is so much more content, and I think in part that is due to the daily routine that she now enjoys, she is with the same people every day, she is safe and well cared for.

    When I visit, we either go out for an hour or two, or I bring her home here for the day, or if the weather is rotten, we just cuddle up on her bed, switch on the t.v. and I spend the next couple of hours telling her the story line over and over, but that’s just fine, I am with her, enjoying my time with her, and most of all, neither of us is anxious or fraught with the day to day grind of pre NH.

    What ever you decide, short or long term, be very well assured that your mates here will support you 100%.

    Love
    Cate
     
  9. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Direct Payments

    My husband received direct payments but I was the one who booked Carers, made out cheques for any help that I saw fit to keep Peter active as long as possible. Yes doing the paperwork quartley can be a nightmare but a lovely person came from the Authorities and we went over them together.
    The Direct Payment scheme enabled Peter to have someone come in to assist him with any D.I.Y. or gardening to enable him to have the supervision and support. Fortunately, I found a very understanding gentleman and he was brilliant. Although Peter was the employer I did have a free hand with the finances, as long as it was help for him.
    Christine
     
  10. ROSEANN

    ROSEANN Registered User

    Oct 1, 2006
    909
    staffordshire
    #10 ROSEANN, Nov 7, 2007
    Last edited: Nov 7, 2007
    Dear Grommit
    This business about Direct Payments makes me so mad you would not believe we all live in the same country.
    I had a carers assesment from which I was awarded Direct Payments for myself to go and do things that make me feel better so that I could continue to care for my husband,if my husband wanted Direct Payments for his self he had to have a seperate assesment.
    Hope this helps
    Roseann
     
  11. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    Again, thank you for your comments.

    Cate, it is really nice to know that you are more relaxed and better able to cope day to day. The "woman on the edge" and the "gritted teeth" bits sum up the situation at the moment, apart from the gender references, that is. It does help to know that there is some comfort to ge gained out there, it's matter of finding it.

    Roseann, if I may I would like to use your case to help my own. I am making up a file of areas of the country which are allowing Direct Payments to Carers so that I can argue my case more efeectively when things start moving.
     
  12. ROSEANN

    ROSEANN Registered User

    Oct 1, 2006
    909
    staffordshire
    Dear Grommit
    You may certainly use my case if it helps, if I can be of any more help just ask.
    Roseann
     
  13. sandrah

    sandrah Registered User

    Jul 11, 2007
    19
    west midlands
    Hello Grommit
    I got direct payments for my dad funded by our local council. we had to open a joint bank account and I have to manage it. I had a lot of help from A4e who advertised for someone to sit with my dad for a couple of hours while I go to work. the problem I have is only one person applied and they were not suitable. the other alternative is an agency which will be a last resort as I wanted it to be the same person every day so they could build up some kind of "friendship". I asked the lady who came to give me a carers assessment about direct payments she then spoke to dad.s SW who as far as I can remember applied to the council for it, some one then came out to do a financial assessment and then A4e got in touch with me. Don't know if this is of any help.
    Sandra
     

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