I don't want to be a carer any more

Discussion in 'I have a partner with dementia' started by maryjoan, Nov 3, 2019.

  1. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    I have been doing this now for a few years, but I don't want to do it any more
    He is positive he is fine, the dementia doesn't affect him, he has conversations with me, he doesn't need a carer, life is fine and dandy...... I cannot even talk to him about his dementia as he so much doesn't think it affects him

    I hate this half life of doing everything for him, whilst he thinks I do nothing......
     
  2. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    209
    Male
    South Northwest
    I'm going to risk being 'that guy' and say that for a long time I've read your posts and thought you need to give yourself permission to step away -- emotionally and perhaps physically -- from your partner. You came together late in life, you seem to get relatively little support from his family and... Maybe it's best for both of you if for you to start leaning heavily on social services before you crack and they have to step in. Begin the the process which leads to full time care.

    Easier said than done, I know. Good luck.
     
  3. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    Thank you - I really feel I have done more than enough and I am so sad and disappointed that its turned out this way - I also cannot get my head around his innocence in all this, makes me feel like the 'bad guy'

    But you are right, you really are, I just need to have the courage to do something about it all......... thank you again.
     
  4. dancer12

    dancer12 Registered User

    Jan 9, 2017
    478
    Mississauga
    Hi maryjoan:

    I want to get off too, it is so difficult, nobody deserves this. This dementia is the wrecker of all good things and the maker of disasters and indecisions. I agree with you maryjoan, I want to get off too and go back to my boring, quiet and mundane old life. Hope today is better than yesterday.

    Sending many cyber hugs with much love and hoping things get batter in the future. .
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    So has anyone on here actually said that they don't want to be a carer for their OH any more and actually seen this through? I was getting so ill as sole carer for OH that I whispered to a social worker on their scheduled four monthly visit, please, I don't think I can carry on much longer. And she said briskly, well who do you think is going to do it for you, then?
    It was all but implied that we should be able to cope with madness, incontinence, violence, abuse, threat, sleeplessness, shouting, falling, isolation ….
    So has anyone here actually seen it through or do we all have to wait for a train crash to rescue us. My GP said it was all about train crash management ...
    love and best, Kindredxx
     
  6. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,019
    Male
    Bristol
    I was so close to making that decision in the spring @maryjoan, so know some of what you are going through. Your OH will be safe and looked after in a home and you will be better able to visit him and support him, so contact Social Services for your own sake and his.
     
  7. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    872
    That social worker should be ashamed of themselves
     
  8. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    The beginning of the end for me was before he was actually diagnosed and was in hospital for life changing surgery. They knew he would need a carer, and I said I could not do it, I cried, told them I was too old, too weary and had already done it too many times before (3) They ignored me, they said I lived with him, as his partner, so I would be his carer.

    I think my heart broke then, and it has not even started to heal....
     
  9. sausagedog

    sausagedog Registered User

    Aug 22, 2019
    34
    Oh Maryjoan....tomorrow, if you can, ring SS and tell them you are unable to cope any longer and that you refuse to be a carer any longer, they HAVE to listen to you. You CANNOT be forced to look after your OH and as others have rightly said before on this forum, tell the SW your OH is the Local Authority’s responsibility. I empathise and hope you make progress with this, there really does come a point when it’s impossible to cope any longer, you must push this point with SS, it’s so wrong when you’re the one left having to cope and no help - I empathise greatly.
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    Can you email the GP, community nurse, clinical mental health team, Social services access team & send them the bulk email stating
    - with bullet points all the reasons why you will no longer be caring for your oH!

    - assessment of needs required in respite care.

    - duty of care to OH & yourself as a carer

    give them a week to find emergency respite care or your OH will be a vulnerable adult with safeguarding issues as He cannot be 24/7 alone.

    you are entitled to 4 weeks a year respite care- & you want it now in a block; as you can no longer cope.

    list everything
    - bullet points
    - oh they love to skim over those bullet points rather than actually read!!!

    spell out every little issue, & if you don’t get a reply within 48 hours you can escalate it.

    I had to do this last year for my Dad as Mum couldn’t cope( she had dementia as well but her GP said she was fine!)

    Document everything in emails! good paper trail to wave about when the powers that be said they were unaware of the issues!!


    Good luck & if need be crying is acceptable! ((((((((((((()hugs))))))))))))

    ps
    If you have hospital appointment, discharge notes to symptoms it’s a good idea to dig those out!
     
  11. TNJJ

    TNJJ Registered User

    May 7, 2019
    653
    Female
    cornwall
    I didn’t realise you were entitled to 4weeks respite???

    I thought that had stopped?Dad is. paying for his 2 weeks . Or is it down to the “capacity “ issue??
     
  12. nitram

    nitram Registered User

    Apr 6, 2011
    19,142
    Male
    North Manchester
    It's means tested

    From the council
    Councils will only pay for respite care for people who they've assessed as needing it following a needs assessment and carer's assessment.

    If you or the person you care for qualifies for respite care, the council will do a financial assessment to work out if it will pay towards it.

    If you or the person you care for qualifies for council-funded respite care, you can ask the council to arrange it for you, or you can do it yourself through a personal budget or direct payment.

    https://www.nhs.uk/conditions/socia...its-for-carers/carer-breaks-and-respite-care/

     
  13. TNJJ

    TNJJ Registered User

    May 7, 2019
    653
    Female
    cornwall
    Thanks.Dad is self funding so that would explain it.
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    Oops sorry forgot to put in that Dad qualified for it through social care & carers breakdown! But I did heavily push as Mum couldn’t look after herself let alone Dad!
    I did the paperwork after the emergency respite was put in place. Maybe I was just lucky or the situation was dire?

    I really don’t know how or when just somehow I did !
    X
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    Mums self funding & Dads council funded! But mums going to be partially council funded soon! Looks like Dads care assessment could be Nursing not social now!

    I dread to think what new forms of torture will be produced by form filling decision makers who have no experience personally of dementia when those assessments are done. hey ho!
    Let’s hope that I can get Christmas out of the way & some money in the bank by working!! I’m learning to say no a lot in November!
     
  16. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    152
    I was pondering this scenario. I divorced my ex husband because of unreasonable behaviour. His behaviour was due to a mental illness but everyone supported my decision recognising that neither I nor my children were safe with him.

    If that mental illness was dementia/Alzheimer’s would people have recognised the need to keep me safe? Or are you sacrificial?
     
  17. TNJJ

    TNJJ Registered User

    May 7, 2019
    653
    Female
    cornwall
    Thanks:)
     
  18. TNJJ

    TNJJ Registered User

    May 7, 2019
    653
    Female
    cornwall
    Sometimes you do wonder.I divorced my husband because he is an alcoholic.But that is classed as a disease..Really!
     
  19. annielou

    annielou Registered User

    Sep 27, 2019
    143
    Thats so sad to read x
    Even though my person is my mum she says the same thing and it is so hard to hear and hurts doesn't it. If its your partner it must feel like your living with a stranger who doesn't appreciate you now and things are all one way. Its like the person you love is dissapearing and being swapped for someone else that is not like them.
    Mum often says shes fine and doesnt need help and hasnt asked me to be here and look after her and also makes me out to be a liar and the bad guy at times. But then other times she does say shes sorry I have to be here and look after her and I shouldn't have to do it, so she at least occasionaly recognises what I do even though she is reluctant to let anyone else help instead of me and a lot of the time forgets.
    Not that I feel like I can, but if I was to walk away from caring for mum I have a home to go to, but when its your partner it must be harder to walk away and logistically more complicated.
    It doesn't seem fair that while there is someone there, be it a partner or relative, that SS cant step in and more help isn't available.
    Sorry no practical help but sending love and sympathy xxx
     
  20. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    104
    Female
    France
    @maryjoan, I am very sorry to hear this, but at the same time am most grateful to read this thread tonight, as my sister feels exactly as you do and is just starting what we all fear may be a protracted fight with Adult Services to convince them - even after needs assessment - that her OH needs 24/7 care but has no comprehension of how bad he is or the effect it is having on her emotional health especially. He is adamant that he wants to continue with care in his own home, of course, and the SW has decided his preference must be respected because - in her judgement - he has capacity. She has made similar comments to the ones @kindred got from their SW.

    Although my sister's OH is a self-funder at the moment, we've confirmed that because he is so close to the 23k threshold, no private care home will take him on without prior financial agreement with the SS to take over funding. Meanwhile, because he self-funding, the SW has closed the case for now. We're in a bind.

    I too wasn't aware of the possibility to arrange 4-week respite for the purposes of assessment (privately or otherwise). This could be a lifeline. From what TNJJ says, a shorter period might also be possible. Are private homes generally happy to undertake this for the purposes of assessment, though? Availability of beds for respite seems very low in my sister's area, so it may be Hobson's choice as to where this would take place.

    From what I can gather, to get SS co-operation, everything hinges on mental capacity. Is that included in the respite assessment? And then after that, there's DoLS. Hoops, hurdles, traps and brick walls in every direction - anything to delay SS involvement and save money. I understand they are under enormous pressure too, but it's so depressing when it's as clear as day to everyone that residential care is genuinely in the best interests of the PWD and their carer at this point.
     

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