No one cares anymore!!

Discussion in 'ARCHIVE FORUM: Support discussions' started by Julia58, Nov 24, 2011.

  1. Julia58

    Julia58 Registered User

    Nov 23, 2011
    92
    Hi i only joined yesterday and have been looking around the forum a bit and if i may would like to tell you about my dear dad.

    Dad is 58 and from the age of 17 he was thrown from a horse which landed on him causing severe damage to his bladder and broke his spine. He spent along time in hospital way back then living in Ireland and came here when he was 24, met and married my dear mum.

    My childhood was spent visiting my dad in hospital which he also had TB and absess'es on his spine and had countless operations.
    Dad spend alot of time too as had a stricture (had to have his bladder stretched every 3 months) at the hospital too. Many times this went badly wrong and they punctured his bowel or bladder and was in intensive care.

    When i was in my twenties dad had to take early retirement from work and after many many tests etc again was diagnosed with Vertebral Artery Insufficiency whereby the basilar artery to the brain became kinked and blood was't getting through to his brain. What we didn't know this was the onset of Dementia after many TIA'S.
    Dad was also diagnosed with menieres Disease. Sp! and his balance would go most days and he would vomit and loose his memory and other very worrying symptons too.

    This continued for many years until he was eventually diagnosed with Multi infarc Dementia and also contracted an auto Immune disease called Pemphigus Vulgaris which has his whole body covered in pus filled blisters and was bandaged from head to foot. In all those years my dad never every moaned or complained about anything.
    That was the kind of man he was.

    My mum took early retirement in her mid fifties to care for dad and is still doing now (dad is now 85 and mum 80). Mum has had Crohns for many years and also now had COPD which is taking its toll.

    About the past ten years or so our family have had to fight for care with dad and mum is sick to death of ANOTHER SS ringing up again saying they are changing dads care again. Now dad is needing alot more care we just can't seem to get it.

    We are fighting to even get a Gp out now or a nurse and as for care in the home well that's a joke.

    The past few years dad goes into respite once a week each month and day care twice a week to another care home and that is now going to alter after Christmas again. All down to funds and MONEY.
    Being very ill myself ( i am mostly bedbound) i feel so damn helpless that i can't do more for them now when they need my help the most. I have Fibromyalgia and ME and am in constant pain/stiffness and severe fatigue.

    Now it is looking like my dad is going to need full time care and will end up somewhere he dosn't want to go or be which is going to make mum worse with her health.

    Sorry for the rant but who cares about the carer and who cares about my dear dad.
    Just very upset today and feeling very down about life.
    J x
     
  2. Julia58

    Julia58 Registered User

    Nov 23, 2011
    92
    Sorry my dad is 85 not 58 he was that when he became poorly.:(
     
  3. Keely

    Keely Registered User

    Aug 6, 2007
    95
    I do not know what to say to you other than I am so very sorry to hear what you and the family or going through - it is just so difficult. In my experience the care that has already been given and continues to be given by family often does not seem to be recognised or computed by the powers that be. I found it to be exhausting but the only route is formal complaints by letter both to social services and health. It would cost so much more if you had full time care for your dad but perhaps that may be the only solution now as your mother is aging and with the best will in the world can not care for your dad full time. As far as the GP I would ring around other surgeries or talk to people for recommendations of a good understanding and sympathetic doctor and change the GP especially if you wish to keep your dad at home. Sending a hug x
     
  4. sueagain

    sueagain Registered User

    Jun 5, 2011
    20
    Manchester
    I was so sad to read your story - how exhausted you must be and how depressing that you can see no light ahead. Your parents are so lucky to have you when you are so unwell yourself. I hope having a rant has helped and gives you the energy to keep trying with Social Services and the NHS and if it has then this is the place to keep on doing that.

    Sue
     
  5. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Hello Julia:
    I started to reply this morning and then had to go out so I am sorry for the delay.

    I am so sorry you are having such a difficult time. No one minds you ranting as we are here to help. There is much experience and advice and loads of emotional support.

    I suggest you write to the Head of Social Services in your area - I believe more heed is taken of the written word. Tell them you believe your parents' needs are not being met explaining the situation. They are both entitled to Assessments, your Dad as sufferer and your Mother as his carer. Maybe they have had one of these but the needs have not been emphasised sufficiently.

    This factsheeet explains:

    http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

    It would be ideal if you could be present at any assessment but if that is not possible could you obtain an Advocate
     
  6. Julia58

    Julia58 Registered User

    Nov 23, 2011
    92
    Can i please thankyou above for answering my post above and sorry its taken a while but been very poorly again.

    We are now sorting things out with dad who is to have an assessment again shortly.

    :):)
     
  7. Bristolbelle

    Bristolbelle Registered User

    Aug 18, 2006
    1,847
    Bristol
    No words to confort you.......

    But what an amazing man! To bear so much and still work etc awesome, I salute him. I salute your Mum too for all her caring. Sometimes fate defies belief I wonder at it all.
    I have no words to offer, just admiration:)
     
  8. jan.s

    jan.s Registered User

    Sep 20, 2011
    7,352
    Carer's Rights

    What a sad state of affairs that you have to shout so loud to get the help you need for Mum and Dad.

    I had a problem accessing social care for my husband and spoke to a very unsympathetic person who was supposed to be sorting things out for me. He told me basically that I stood no chance of getting any help for at least 4 months!

    I was fortunate that I had spoken with somebody from the mental heath unit, who stood up for me and within 24 hours I had a care package in place. One of the things she quoted was Carer's Rights which is a legal obligation.It was amazing how fast he jumped! There is more info on this link

    http://www.nhs.uk/CarersDirect/guide/rights/Pages/carers-rights.aspx

    Can you also get Dad's consultant involved?

    I hope all works out for you. Please keep posting.

    Jan x
     

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