I am new to this forum and just wanted to say hello.

Discussion in 'Recently diagnosed and early stages of dementia' started by JanScots, Jan 4, 2016.

  1. JanScots

    JanScots Registered User

    Dec 29, 2015
    12
    Hello

    My story so far....

    After banging on many doors for well over two years with my concerns about my Mum and many visits to A&E with various collapses which after about the 5th time resulted in a scan, I finally got the GP to listen to me and got her referred to the memory clinic. My Mum had her diagnosis about two months ago (Vascular Dementia). Now we have the diagnosis, the memory clinic have signed her off but have referred me to The Alzheimers Society. I could have cried when they called me to arrange a home visit for a chat which is happening tomorrow. I finally felt someone understood and was prepared to help me after being left to my own devices for so long.

    Reading many of your posts, oh my goodness, if felt like I had written many of them myself with all your experiences and I look forward to becoming part of this forum. Although I have been dealing this for a while, I know I have a longer road to travel as many of you have and are still going through.

    Thank you in advance.
     
  2. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,095
    Male
    Bristol
    Welcome to the forum Jan. I suppose we were lucky that the memory clinic referral was part of the follow up to the stroke rehabilitation programme, sorry to hear you had to fight for a diagnosis.
     
  3. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    Welcome to the forum, JanScots! I know you'll get lots of friendly help, advice and support from the lovely members here, as I have done. They have helped me through some tough times and their support is invaluable.

    Do keep posting and remember that no question is too trivial or bizarre to ask. There will almost always be someone who has been through something similar, and everybody understands how bewildering it all is at the start.

    x
     
  4. JanScots

    JanScots Registered User

    Dec 29, 2015
    12
    Thank you

    Thank you for taking the time to respond so quickly even if I did not really ask a question, I have felt so alone for so long now... knowing there is a place I can ask all the questions where people understand. This has sure bucked me up to keep fighting the fight.
     
  5. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Hi Jan, welcome to TP
    I don't know if the "Scots" bit in your name means you're actually in Scotland, if so you may find there are a few things available to you that aren't available in the rest of the UK. I'm surprised the memory clinic just diagnosed them immediately signed her off is this into the care of her GP?
    K
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    Welcome to TP. Enjoy the visit tomorrow and here's hoping many new avenues will open to you both to make your lives and your journey together easier xx
     
  7. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,644
    south-east London
    Welcome Jan - I have found Talking Point invaluable for information, advice and support and I know you will too :)
     
  8. balloo

    balloo Registered User

    Sep 21, 2013
    227
    northamptonshire

    sorry to say but this happened to my MIL who was diagnosed 3 years ago. as VD nothing they can do so back to Gp who should check BP regualaray ( that's a joke at least where we are).no we are pushing for help and as self funding SS just sent a directory ( another mind field to climb.
     
  9. beverrino

    beverrino Registered User

    Jan 12, 2015
    1,111
    hello Jan and welcome to TP. Its a wonderful place with such lovely caring people and I am sure you will find it a good place to be.
    keep posting xxxx
     
  10. JanScots

    JanScots Registered User

    Dec 29, 2015
    12
    #10 JanScots, Jan 5, 2016
    Last edited: Jan 5, 2016
    I am Scottish, but live in Yorkshire as does my Mum now, she moved down from Scotland to us over four years ago... thank goodness otherwise coping with this long distance would be a whole lot harder than it is..... my name is Janet... :)
     
  11. JanScots

    JanScots Registered User

    Dec 29, 2015
    12
    We are self funding as well, so no help! Yup I got the Care directory as well.... so because my Mum has a bit of money... all of a sudden I am an expert on all of this!
     
  12. JanScots

    JanScots Registered User

    Dec 29, 2015
    12
    Thank you..
     
  13. JanScots

    JanScots Registered User

    Dec 29, 2015
    12
    Thank you
     
  14. JanScots

    JanScots Registered User

    Dec 29, 2015
    12
    Wow.... what can I say

    Thank you to each and everyone that has posted with your support... I have loads of questions but need to have a think...

    One positive from today was I had a visit at my home from a lovely lady called Jan from the Althzheimers Society, which went really well. She spent over two hours with me. Just having someone to listen (at long last) who is an expert on this heinous disease, that understands but can also give practical advice was so cathartic. Up until now I have been on my own with this.... down to a GP who does not have a clue and also because my Mum is self funding.... Social Services just hand out the "Care Directory" so... erm..... all of a sudden I am expected to be an expert on my Mum's needs just because she has a bit of money in the bank.... it just sucks!

    Non positive of today was explaining yet again to my Mum ... and her response was “Well how long is it till you get me certified and locked up!” It is nothing like this but trying to reassure her that all we are suggesting is that we need to get more help in her house, nothing more is really difficult as she will not accept that she needs this as she totally forgets that I do most things for her now, I work three days a week, have my own house to run.... and yes perhaps me and my husband also have a life as well...

    Hope this did not come across as selfish...
     
  15. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,095
    Male
    Bristol
    Social Services gave us the option of going to direct payments, but the whole hassle of paperwork on top of everything else sounded too daunting. You have my total sympathy Jan.
     
  16. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    You've hit the nail on the head there Jan, if the state doesn't have to get involved they very much leave it to you to sort yourselves out, it makes you wonder why there is a degree in social work when any idiot can do it (by which I mean me).
    The LA did nothing to help with my mother a few years ago and they do nothing to help with my wife now other than £64 a week carer's allowance, practical help is zero.
    K
     
  17. JanScots

    JanScots Registered User

    Dec 29, 2015
    12
    Thank you so much for your kind words... May I ask.. do you have information on Direct Payments... if you are self funding is this something I can look into for my Mum?
     
  18. JanScots

    JanScots Registered User

    Dec 29, 2015
    12
    That is what I am finding... we get nothing except for the lower attendance allowance... putting aside money erm.. ... but because of having money... the support and advise is just not there....
     
  19. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,051
    GLASGOW
    Welcome to tp. You will find you are never alone here. No matter hiw dark your day or thoughts someone here will have thought it before. No judgement, just understanding and advice.
     
  20. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,095
    Male
    Bristol
    OH care package is paid for by the local Council, so we just got a short print out of what may be involved in going to direct payments which I never kept. Sorry Jan. But, as I recall it did seem to make the carer responsible for log-sheets, monitoring times taken on every visit and managing a budget. Having learnt a little about spreadsheets and the like over the years that part may not be technically difficult to do. However I expected Social Services to at least monitor the quality of care agencies and whether they keep to times and standards. That is a lot of extra responsibility on top of caring.
     

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