Struggling to be a Carer

Discussion in 'I care for a person with dementia' started by Rosserk, Jul 9, 2019.

  1. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    127
    Hi all

    I’m new to the forum and this is my first post.

    My mum who lives with me has just been diagnosed with dementia. She has been exhibiting signs of dementia for the last 18 months but refused to go the doctors.

    I am registered disabled and I am really struggling to look after her and don’t know where to turn. I feel really guilty that it’s not coming easy to me. She is really nasty and can be aggressive and confrontational.

    Social services have been informed and I am expecting a visit to discuss her care. I don’t think she’ll get any help because she has some savings which means she would have to pay for additional care, which she won’t agree to because she doesn’t think she has a problem. I’m at my wits end, I can’t sleep from all the stress.

    Any advice would be really welcome

    Kindest regards
     
  2. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,374
    leicester
    Hello @Rosserk and welcome to the forum
    I can see the difficulty with your Mum but let SS do their assessment on your Mum and also a carers assessment for you which I hope you have requested? No one can be forced to care for someone so don’t be pushed into a corner.
    As you are disabled please make your circumstances known to SS.
    Now you have found us I hope you will continue to post for advice and support
     
  3. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    127
    Nellbelles thank you for taking the time to reply.

    I haven’t requested anything the doctor told me to wait for SS to get in touch. He said he told them she needed an urgent assessment, that was in Monday.

    I am guessing they will come to my home and it will be impossible to talk in front of my mother. She still knows there’s something going on so she will be really difficult.

    No ones really told me anything, I am not even sure what stage she’s at other than she seems to have got significantly worse during the last 6 weeks.
     
  4. Beate

    Beate Registered User

    May 21, 2014
    11,697
    Female
    London
    Stage doesn't matter, what matters is what kind of help she needs. To prepare for the assessment write down all of your mother's challenging behaviour, what she can and cannot do, that she will try to convince them there is nothing wrong, and what kind of support you are looking for, especially taking your own disability into account. Be as specific as you can and hand it to them as a clear part of the assessment.

    Don't let yourself get drawn into any financial discussions. Just say you're not sure how much she has in the bank yet. If you think you cannot handle it yourself, get someone from your local Carers Centre or Alzheimer's Society to act as your advocate.
     
  5. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    127

    Thank you for taking the time to respond.
    I would never have thought about getting an advocate to help me. I thought advocacy was only for people who had lost capacity?

    If I don’t answer their financial questions won’t they refuse to help me? I can’t actually answer any financial questions I’ve looked for bank statements but couldn’t find anything because she hides everything! Also if they offer help won’t I just end up with a huge bill for care?
     
  6. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    127
    Hi I did send you a reply but I think I posted in the wrong place! It’s below your message. Sorry
     
  7. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hello @Rosserk
    welcome from me too

    a financial assessment will follow the assessment of care needs, so don't worry that you have no information at the moment, just be honest and say what you have written here

    any fees for your mum's care should be paid onlyvfrom her income and savings, you should not be asked to pay for her care at all ... these pages on the AS site may help
    https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care

    might you write/print out all the information you want the Social Worker to know and hand it to them as soon as they arrive, so they have a chance to read it and you won't have to say the details in front of your mum ... and make it clear that you yourself are not in a position to provide hands on care for your mum, that you will need home care visits, respite ie whatever you believe is needed

    it may be worth looking into arranging LPAs for your mum so that you have the legal authority to help with her financial affairs, this will make things a lot easier for the both of you in the future

    https://www.gov.uk/power-of-attorney

    PS you didn't post that reply in the wrong place at all, it's fine
     
  8. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    127
    Hi Shedrech thank you!

    It was really nice of you to take the time to give me some advice and it’s much appreciated.

    That’s a really good idea about printing something off! Why didn’t I think of that?

    I literally can’t think straight! It’s so daunting the speed at which she has deteriorated. I have no idea what to expect next, every day brings a new and shocking surprise, it’s really upsetting to watch. I want to run away and hide.

    My father has dementia and has been in a care home for three years. I stopped visiting him because I couldn’t bare seeing him like that and now it’s happening all over again.

    Kindest regards
     
  9. Philbo

    Philbo Registered User

    Feb 28, 2017
    666
    Male
    Kent
    Hello @Rosserk and welcome.

    Some excellent advise already given, so the only thing I can add is to stress that with your own health issues, plus your mum's aggression (worth emphasising this last point too), you are vulnerable too. The local authority have a duty to safeguard both your mum AND YOU.

    As it is the GP that has referred the matter to the local authority, it may be worth checking with the practice to see if they've had any response. You would like go think that either the surgery or the LA would write to confirm proposed appointment to visit, but it wouldn't be unheard of for someone to turn up unannounced, or nothing happen at all?

    Good luck.
    Phil
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,384
    Kent
    If it`s any help @Rosserk I used to tell my husband SS was coming to help me. I also, as previously suggested, warned them in advance about my husband`s refusal to accept outside `interference`.

    I hope it goes well for you,
     
  11. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    127
    Hi thanks for the advice it’s kind of you to take the time.

    I think they will just turn up unannounced! Or she will beat me to the post and hide the letter!

    It’s so strange, this morning she was at home getting a cold drink of water for my dad whose in a nursing home. She said he told her the water was warm yesterday even though she didn’t see him yesterday. However she’s still capable of deception which would require clear thinking. It’s like living with a dozen different people I don’t recognise.

    I’m completely out of my depth and wish I had some idea of how fast it’s going to progress. She seems to have rapidly declined over the last 6 weeks and I’m unsure if she’s plateaued. From what I’ve been reading this could go on for years and I really can’t cope with that. I have literally been told nothing!
     
  12. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    127
    Thank you it’s kind of you to help
     
  13. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    127
     
  14. Frances96

    Frances96 New member

    Jul 10, 2019
    1
    I have been carrying about my husband for 5 years and I have become stronger now. All our family is pulled together.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
  16. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,510
    Female
    My mother had two separate needs assessment from SS, and each time they rang me beforehand and arranged a time to visit. So hopefully you should get a few days' notice of the visit, but if they ring and yourf mother answers and she says no thanks, I don't think they will even turn up.

    My mother accepted the visit and had a nice chat with him, but said she didn't need any help. He took her word for it and that was the end of their input. Don't worry about finances though - he only asked that question after he'd visited. He wasn't interested in details, just in whether she was over the £23,500 threshold.
     
  17. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    127
    Hi thanks for your reply

    I’m confused about the income threshold she has joint savings with my father of about 40 k. My father has dementia and is in a care home but is fully funded because he was aggressive and considered a danger to himself and others.

    If my mother is slightly over the threshold will they only use her funds until she goes below the £23.500 or will they just keep taking it?
     
  18. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,510
    Female
    If the £40k is jointly owned and half is your father's, your mother is under the threshold because she only has £20k, so SS should start paying towards her care. When savings drop to £23k, SS pay towards care on a sliding scale - as your savings go down, SS pay more. When they drop to £14k, SS pay for all care.
     
  19. Moggymad

    Moggymad Registered User

    May 12, 2017
    362
    Female
    My mums savings were always below £14k but she still had to contribute appx equivalence of the low rate attendance allowance she was getting, which I thought was fair.
     
  20. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    757
    Male
    Newcastle
    #20 northumbrian_k, Jul 10, 2019
    Last edited: Jul 10, 2019
    If you are present during the assessment, try to get the true picture across to the adult needs assessor without causing friction. It is easier said than done, but if you get the chance you need to be honest in a subtle way as your mum will try to give a very different impression. For example, if she claims to be an avid reader but no longer reads, turn the conversation to ask about her favourite author or book. If she claims to be a good cook say how much you have always enjoyed her food, but with an emphasis on the past tense. Whatever she says that is incorrect find a way of countering it so that the assessor gets the point. If this provokes some of the aggression and confrontational attitude that you mention, although unfortunate that too ought to get the point across.
     

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