Where to start and who to speak to?

Discussion in 'Recently diagnosed and early stages of dementia' started by Dezza, Feb 7, 2016.

  1. Dezza

    Dezza Registered User

    Feb 7, 2016
    3
    Hi.

    This is my first time and I just need some advice. My 79 year old father is completely bedridden, fed and medicated through a peg as he is unable to swallow, cannot speak, has a catheter, is diabetic and has now been diagnosed with dementia. He has no quality of life and now very audibly makes moaning sounds most of the day.

    He is cared for by my 77 year old mother with the help of some lovely carers who call 4 times a day to clean and turn him etc. I live a while away but try and get down every week to see him and I phone my mum most nights to make sure she is ok as she herself is very unwell.

    The problem I have is that she is at the end of her tether, breaking down regularly, and does not seem to get any help or advice from social services or her doctor. My sisters and I (and my mum) feel it is time to get him professional medical help in a care home but have no idea where to start. I have emailed the social services today but am not holding out much hope of a reply as they have not been much help so far. Mum is going to see the doctor on Thursday with dads blood figures and I am going to go with her to ask the doctor what to do. My mum feels INCREDIBLY guilty about putting him in a home as he has worked all his life for his house, but she just cannot cope any more.

    Does anyone know if there is anybody else we need to contact that will fight our corner?
     
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    There are a lot of people on here who will be able to tell you more about the financial situation with the house. As far as I am aware the house will not be affected - your mum lives in it and that's that. They will take into account his pensions and half the savings in joint names when the calculations are done as far as i'm aware

    I don't understand what you mean when you say that social services aren't interested. I would phone them on monday and say that your mum URGENTLY needs a carers assessment and your dad needs an assessment and that if they don't do this then your mother will have a breakdown and there will noone to care for your Dad

    I hope you are getting attendance allowance - if not you need to apply for the highest rate immediately as they are going to stop it soon and it is about £80 a week so helps enormously. Age UK will send someone to help with the forms 0800 169 2081 is the freephone advice line and they are open today and will help with all sorts of info

    A good idea is to join up to the local carers cafe to get some info about local care homes and what is good and what is not so good.

    Have you asked about Continuing Care Funding (NHS funding) for your Dad? It requires and assessment and there will be other things to do first but keep it in mind for when the process starts.
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    Hi Dezza

    First, welcome to TP. Second, forgive me this intrusive question, but has your dad got more than £23,250 in the bank? Only him, and if it's a joint account with your Mum, half of it is classed as his. If he has, he is classed self-funding so you can ignore social services and find a care home and fund it yourself.

    If he hasn't, unfortunately he will need their input in form of a needs assessment. Ask for a carers assessment for your Mum at the same time. Her right to this is enshrined in law. You will need to tell them in all details how caring for him affects your mum and that she can't cope anymore. You need to make it quite clear that she is at risk of carers breakdown and that she will walk away if no help is forthcoming. Remind them that they have a duty of care for a vulnerable adult at risk. If you've already done battle with them to no avail, find your local Carers Centre, Age UK or Alzheimer's Society and ask them to act on your behalf as your advocate. They know people and can often kick butt a bit more effectively.
     
  4. Dezza

    Dezza Registered User

    Feb 7, 2016
    3
    Thanks for that. Mum and dad have had quite a few assessments but we weren't there and I think it was too much information for my mum to take in. She has carers allowance but I will ask about the Continuing Care Funding. I have emailed Social Services today and stated very strongly that she is on the verge of a breakdown so I hope they will get back to me. She was given respite just before Xmas but unfortunately, the care wasn't the best and he came home with terrible bedsores (he was only in for a week!) so this has put her off requesting another one. I think we just need to take this out of her hands as she is unable to make any rational decision at the moment.
     
  5. Dezza

    Dezza Registered User

    Feb 7, 2016
    3
    Thank you so much for this. I don' t think dad has that much as they are having to contribute to the carers wages ( which we don't begrudge as they are incredible people). I will print all your advice up and look into everything you have said. It's nice to have people who understand. Thank you
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    That is such a shame for her and for him but I completely understand why she wouldn't want to repeat the experience. The cafes are a great place for advice on the good and not so good and if you get the research right then there are some good care homes out there, but you need to be really thorough!! I think that you are right if she is really unwell but perhaps you can persuade her that she will still be his carer, keep her in the loop all the time in the research and the visiting of potential homes and reassure her - a good care home will encourage relatives to treat it as home from home and allow them to be there whenever they want to for however long they want to - it is the mark of a good home (not just that alone of course) because it means that they are open and transparent about the care they are giving and confident it is the best they can do.
     

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