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  1. #61
    Registered User creativesarah's Avatar
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    Hi Embers

    I am sorry youve had such a hard time recently

    if you feel you can do keep posting every now and then, you are very articulate and we dont have to put on a brave face here,

    take it easy on yourself

    Sarah
    The person who can laugh at themselves will never cease to be amused

  2. #62
    Registered User Daryl2510's Avatar
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    I'm back... for a while!

    Hi all... sorry it's me again!

    I came across my bookmarks and remembered this forum.... I can't quite remember what I infringed but was assured in a PM from the team that it wasn't in no way serious and asked to keep posting.

    I wasn't going to, but then I have just read the posts made by Embers and felt I had to respond... just to give her a response from someone sat on 'her side of the fence' shall we say.

    Embers, your emotions are, and have been a mirror image of how what I have been through ( except I haven't an husband )... it is understandable, and totally natural and part of the process of the illness we have. We are actually 'grieving' for ourselves at what we know we are going lose, miss out on and what we will never achieve. You feel worthless, useless and you totally lose all motivation to want to move forward, yes?

    Believe me love, this will pass. You may not yet see any light ahead, but I promise you it will come... What did it for me you ask? ACCEPTANCE - acceptance that you have dementia, acceptance that the future isn't going to be what you or perhaps your family wanted it to be and perhaps the most important of all, acceptance that you are still you, now and in the future. Your family will still love you, your husband will still love you, and your true friends will, no matter what happens... my darling Mam is the living proof of this, and it has provided me with great comfort for my 'journey' ahead.

    Please try and come to terms with your condition and what it brings with it... you will find that this is the only 'cure' for your feelings at the moment - and acceptance of this is the biggest part of recovery.

    Take care... you have my full support in your journey

    With love

    Daryl x
    ----------------

    All the best

    Daryl

  3. #63
    Registered User Daryl2510's Avatar
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    Financial Assessment from social services

    Following on from my past adventures, I am pleased to say that I had a financial assessment carried out by the finance department of the social services on Friday.

    I have been told that I can have free daycare, which I nnnow attend once a week for the day, but have to pay for the meals and transport, which isn't a problem at all. A full financial calculation will be made Tuesday in which I will be told how much is contributed towards my respite care when I go into the local residential carehome. It can be a bit of a financial burden when I've had respite, because as well as having to pay for it, I have also got to keep my flat running too, but I manage.

    So it is looking good for now... my next battle will probably be when they change my benefit, yet again, from DLA to this new PIP tht has been in the news today - oh the joys!!

    Take care all
    ----------------

    All the best

    Daryl

  4. #64
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    Hi daryl

    Hi daryl
    I also have been diagnosed with early onset and to have had so many problems with most benefit agencys over my ilness and how it affects my everday life in and out of the workplace. what might be easy for others is almost impossible for Me and incredible humilating and demoralising so i know how hard that is on top of the day to day challenges we face daily. Iv recently seeked new employment in a field that suits my ilness so i can live as independently for as long as possible. I read your story and was moved on how selfless your attitude to the ilness is and has given me strength and made me relise that understanding and sharing other peoples experience we all face DIFFRENT obstacles but it how we face those obstacles that matters and is most important is a positive attitude to face the future. Hope to hear from u soon take care

  5. #65
    Registered User Daryl2510's Avatar
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    Quote Originally Posted by matts View Post
    Hi daryl
    I also have been diagnosed with early onset and to have had so many problems with most benefit agencys over my ilness and how it affects my everday life in and out of the workplace. what might be easy for others is almost impossible for Me and incredible humilating and demoralising so i know how hard that is on top of the day to day challenges we face daily. Iv recently seeked new employment in a field that suits my ilness so i can live as independently for as long as possible. I read your story and was moved on how selfless your attitude to the ilness is and has given me strength and made me relise that understanding and sharing other peoples experience we all face DIFFRENT obstacles but it how we face those obstacles that matters and is most important is a positive attitude to face the future. Hope to hear from u soon take care
    My support and encouragement matts...

    For someone so very young with our condition you're facing it with great courage and determination - and that is the best thing to do whilst we can.

    We may not win the war.... but we can sure as hell win as many battles as we can throughout our journey mate.

    Keep the faith - and the fight!

    Daryl x
    ----------------

    All the best

    Daryl

  6. #66
    Registered User Daryl2510's Avatar
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    My updates within my journey...

    A couple of quite significant updates for those that have followed me in my journey and capers...

    ...I have been officially informed that I have now entered the second stage of Alzheimer's Disease. I have gone from mild to moderate form of the illness, which is, I am told the normal stage process after a coupe of years from diagnosis - bearing in mind I had the symptoms a good year or so before I was given the official verdict in June 2011. So that is a milestone passed in this journey of mine, and I can still keep you informed - so lets cling to that at least.

    The second bit of information is that my nephew is going to live with his girlfriend in the coming weeks (and I should think so after 7 years of being in a relationship with her - let her put up with him full time now... it'll either make or break 'em!!).

    Because of this, I have been told that I shall no longer be able to live where I am in my present home, where I have lived for 20 years, and where my Dad literally died at the side of me... I am not that upset about having to go to be honest because I realise, after what I have mentioned in the first paragraph, that things aren't certainly going to get any better. My Social Worker has applied to my council for an updated application form for moving, and I have received it today. She is going to come to the flat and fill the form in for me. Also the spare bedroom tax will kick in when my nephew leaves here and I so will begrudge having to pay that... so they can rehouse me, and my flat will suit a couple with a child or adult with them. My Social Worker, along with my care coordinator are going to get the council to seek me a smaller place in some sheltered or secured accommodation, where I can live on my own whilst I still can, but be in a place for when the time comes when I cannot... there are a few council properties lie that, but they may have to go into the private rented groups for more of those places.

    So there you have it... a big change all round - but I'm still me, and what's more... I'm still here!
    ----------------

    All the best

    Daryl

  7. #67
    Registered User Daryl2510's Avatar
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    ...yet another update

    My nephew officially moves out tomorrow and I have been to Council to remove from living with me.

    My social worker has been today and filled in my housing exchange application for smaller and more secure and sheltered accommodation because my flat now us officially too big... it was even when my nephew lived here.

    The Housing Manager at Ashfield Homes has made an appointment to see me and my social worker one day next week, day tbc, about my needs and future security.

    So it looks like now within a matter of a few weeks I shall be living somewhere new, which I am glad of to be honest now, because all this has become a little too much to handle... but my social worker is a dynamo and I am very grateful of all that she has done for me.

    Take care
    ----------------

    All the best

    Daryl

  8. #68
    Registered User Daryl2510's Avatar
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    it's all go...

    I have had to have emergency respite for two weeks in the carehome that I cannot mention here. I have been doing well, but then my nephew has gone to live with his long-time girlfriend, and I suddenly find myself looking after a two-bedroomed quite large ground floor flat.

    To top all that off, not only am I now short my nephew's board payments fortnightly, the local council immediately started charging me £10 per week for the new coalition government's 'bedroom tax'!

    My social worker and the housing manager of my council landlords have been a boon though. After writing a fairly extensive report, and with a lot of support from the housing manager, the local council has wavered a dispensation in my favour to be allowed to 'bid' on tenancies that provide single bedroomed accomodation within their elderly complexes, because of my future needs, as well as the present ones.

    So hopefully, although sadly, I should soon be moving into much smaller accommodation that will be beneficial to me now and my future needs. I have currently lived at my present address since 1997 when I moved in with my late father, and after he died on New Year's Eve 2001, I succeeded the tenancy.

    I leave respite tomorrow (Friday) after spending two weeks in the carehome, and I must go back and start preparing the inevitable, but welcome 'flit'!
    ----------------

    All the best

    Daryl

  9. #69
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    Good luck with the move when it comes Daryl - I do hope you will settle there quickly, and that the change isn't too disruptive.

    I am so pleased that for once there is a positive posting re SS - your SW sounds good, what a pleasant change from all the negatives people often seem to encounter.

    Also that you find the respite care obviously helps when you need it most, hopefully your batteries will be recharged for packing up!

    Please keep us updated on how things are going?

  10. #70
    Registered User Daryl2510's Avatar
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    my first bid…

    I’ve got a bid on my first property for transfer with the local council.

    It is for a one-bedroomed bungalow, for the over 60s (but I have a dispensation to be allowed to bid on such properties) with walk-in level shower, gas CH etc.

    I will let you know how I get on - fingers crossed, I am top bidder up to yet, as I have just been put into Band 2 (out of 5) for my medical needs.


    Band 1 is ‘Emergency’ and band 2 is Priority… things are looking good.
    ----------------

    All the best

    Daryl

  11. #71
    Registered User Daryl2510's Avatar
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    Got a new bungalow!

    I have won the bidding for a bungalow within an elderly complex in the town next to me.

    My nephew lives just a five-minute walk from me, and there is a local store, and more importantly, a fish and chip shop, within 100yds!

    The local council have telephoned me to confirm that I have won the tenancy, and must transfer from my present accommodation within the next 28 days.

    At least that will put an end to this bedroom tax that I have had to pay since my nephew left me - the sooner I move the better I think
    ----------------

    All the best

    Daryl

  12. #72
    Registered User Dazmum's Avatar
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    That's excellent news Daryl, all the very best in your new home, please let us know how you get on x
    "All shall be well, and all shall be well and all manner of thing shall be well.”
    ― Julian of Norwich

  13. #73
    Volunteer Moderator Izzy's Avatar
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    Great news!
    Izzy
    Former Carer and Volunteer Moderator

    ABOUT ME.

    Ca canny but ca awa.

  14. #74
    Registered User Daryl2510's Avatar
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    I've had to go to GP today and he has told me I have got pneumonia with a touch of pleurisy... I gave got to go back in 7 days to see if the fluid has cleared off my lungs after a course of antibiotics.

    I'm flitting within the next three weeks... so that is all I need at the moment.

    I'll let you know how I get on - I've got to rest up for a few days so I'll report back then
    ----------------

    All the best

    Daryl

  15. #75
    Registered User Dazmum's Avatar
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    Oh you poor soul, that sounds nasty, take it easy and I hope you feel better very soon. I know you are getting ready to move, but try not to do too much. Take care xxx
    "All shall be well, and all shall be well and all manner of thing shall be well.”
    ― Julian of Norwich

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