The fightback begins here!

Discussion in 'Dementia-related news and campaigns' started by Soroptimist, Aug 13, 2019.

  1. Cazzita

    Cazzita Registered User

    May 12, 2018
    516
    Unbearably sad and so unfair :(
     
  2. Cazzita

    Cazzita Registered User

    May 12, 2018
    516
    Absolutely! I dreamed that we all took our PWD to Downing Street and left them at the front door! Wonder what they - the government - would do then! x
     
  3. Cazzita

    Cazzita Registered User

    May 12, 2018
    516

    As you say, it's likely rhetoric. I won't believe anything until I hear it, see it and feel it. There is always hope...
     
  4. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,365
    Female
    South of the Border
    I have been asked if Alison Holt from the BBC can come down and film us next week, do not really know how the BBC got my name other than from Carersuk, but I am happy to talk to them - and tell them as it really is, not the sanitised version of dementia.........
     
  5. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,365
    Female
    South of the Border
    I once invited the Devon Director of Social Care to come to my house and do what I did ( this was years ago, when I fostered a lovely lad with cerebral palsy, sho, sadly has passed on). Needless to say, the guy did not take me up on the offer.........
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,817
    it’s very easy to have an office based opinion- flexible working hours, holiday leave & pay, sick leave, coffee & lunch breaks, etc
    Yet none of these apply to carers!
    Caring is a job
    so basically a carer doesn’t have the same rights as anyone else? And the powers that be are happy with that situation.....

    so if you put another person into this working position, you would be breaking EU law & legislation, along with breaching human rights.

    Doesn’t seem fair does it?
     
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,817
    You are that person with vast experience & perspective of the system & it’s failings.
    I look forward to reading & seeing this interview.

    Good Luck x
     
  8. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,365
    Female
    South of the Border
    Thank you m'dear. I do have a lot of experience, and it grieves me that I am getting on in years (70) and wish I could make changes happen.
    Years ago, on the Isle of Man, I fostered a little girl with cerebral palsy, and got the law changed over there in relation to children with disabilities who were in care. Here I, with others, got a facility in Mid Devon for respite for children with disabilities.
    Now, I struggle with the lack of provision for adults - social care in the UK across the decades is horrendous.

    I will try my best
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,817
    you are an amazing person, I truly believe things happen for a reason. Mostly I don’t understand that reason but out of every situation some positive element will happen. However large or small.

    I look forward to hearing / reading all about the interview. A true advocate for us locally
    Xxxxx
     
  10. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,365
    Female
    South of the Border
    Thank you so much - I try, but I am almost at the end of my tether here at home - I will do my utmost and best
     
  11. Cazzita

    Cazzita Registered User

    May 12, 2018
    516
    That is brilliant - there is no sanitised version after all. Good for you! Wishing you luck doing the interview and let's hope that many hear your voice and all you say on behalf of the rest of us x
     
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,817
    I’m sorry you are at the end of your tether, it’s an unfair system .
    Let us know when the interview happens
     
  13. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    51
    That's great news @maryjoan, I looked her up and she looks like she knows her stuff. Good luck with it - I wonder what programme she's doing it for.
     
  14. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,365
    Female
    South of the Border
    All fallen to bits, I am afraid !! My partner's son did not want his father talked about nor on film on national TV as he has dementia.
    I have to respect this, and in a way, I can see his point of view. Shame though.
     
  15. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    51
    That is a shame. The more this is outed the better. But I can see it could be difficult for your partner's son.
     
  16. TNJJ

    TNJJ Registered User

    May 7, 2019
    765
    Female
    cornwall
    What a shame.Does your partners son help??
     
  17. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,365
    Female
    South of the Border
    he lives 250 miles away, and is having his father stay with him for a week at Christmas, he also helps with interaction with social services.....
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,817
    I am really sad that your husbands son doesn’t want this interview to go ahead. I’m pleased you have support from him though
    X
     
  19. Max68

    Max68 Registered User

    Aug 21, 2018
    79
    Male
    Sussex
    Something really needs to be done as it affects everyone in a family. Mum as I state on my thread is now in care and we (or she) pays £4000 a month to pay for it. People who aren't aware of dementia are absolutely shocked when they find out how much she pays and as others have said other conditions you don't have to.

    But once in care it doesn't get any easier. I didn't work for over a year to take care of mum in her last months at home and because I didn't live there I didn't get a carers allowance just Universal Credit. However of course that means you are meant to look for work 35 hours a week so as well as looking after mum and her affairs both at home and when she went into hospital I had the delightful DWP breathing down my neck!!

    Mum entered care a few months ago and I managed to find a job which started at the start of November. However it costs me £250 a month fuel with a 2 hour commute, my council tax has gone up because I am working and I am still obviously mums POA so running two lives whilst working the new job.

    After work I try and see mum as much as I can but it's in the evening so she is at her worst and when I get home there is invariably post or emails I have to reply to and most companies have gone home by the time I get back so have no time to phone anyone to sort things out. Plus I live alone so I have no-one I can allocate things to bar my sister who has a special needs child so she has her hands full all day. I am often gulping down egg and chips at 10pm at night before hitting bed to be up for 6.20am the next day.

    I am obviously not having time to cook properly, do the household chores etc during the week and spend my weekends catching up "my life" and even after just a month I am exhausted. Flexible working with less money for earlier finishes or only working 4 days rather than 5 would help but you can't ask things like that after only being there a month!!

    I am sure I am one of thousands in the same boat where the whole dementia experience destroys the mental state and physical health of not just the person requiring the care but the family members themselves and that doesn't cover the guilt that accompanies, certainly in my case, the awful feeling that I am not seeing mum enough now I am back at work.

    The Government either doesn't see this or just ignores it as not their problem.

    Sorry for the rant!
     
  20. Lirene

    Lirene Registered User

    Sep 15, 2019
    128
    It is a very sorry state of affairs that 3/4 of the people in this country have absolutely no understanding whatsoever of dementia and many other chronic illnesses that also have dementia-related symptoms.
    I am astounded day after day of reading posts on this network of the absolute lack care, understanding and downright abuse, both mental and physical, that our loved ones suffer at the hands of the callous and utterly cruel people who are supposed to be caring for the very vulnerable in our society.
    It must stop NOW and we must act accordingly. We must report immediately anything that we deem is unacceptable, however small the incident may be.
    Our loved ones with dementia and illness related dementia revert to being childlike in all terms and as such should be protected like children.
    We carers protect and care 24/7 and when we, for many reasons, cannot care anymore we have to entrust our Duty of Care to others. However, cruelty and neglect are criminal offences and as such should always be reported.
    Please, please everyone be vigilant write things down, take photographs and report everything. Go further if necessary and go to the top, social workers, social services, health care professionals, members of parliament, Prime Minister and Police.
    Dementia and related illnesses is a time bomb, carers are running around like headless chickens trying to do their best but attitudes and caring must be put to the forefront I know we are all exhausted with caring and fighting for everything and not all loved ones are exposed to suffering at the hands of others. but some do and we never know what goes on behind closed doors.
    My prayers are for all xx
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.