1. SLA

    SLA New member

    Dec 5, 2018
    8
    Female
    Hi, I'm new on here and no idea how it all works. My mother has been recently diagnosed with dementia although we are still waiting to find out which type. She currently lives on her own in a flat after my father died three years ago and she has declined progressively since his death which I believe was the trigger. My sister and I don't live that near her and so we have been recently trying to get help in for her in the form of carers a couple of times a week to help her with shopping, cooking and general chores around the flat as well as providing company as she is lonely and depressed. We got carers in and it seemed to be going well for the first couple of weeks, but now she is refusing them, though that may change again. Mum is extremely stubborn and completely refutes anything is wrong with her and says that she is perfectly able to look after herself when clearly she isn't in terms of shopping and cooking for herself and sge is losing weight. We don't know what the next steps for her are and feel a bit helpless at the moment. She isn't ready for a care home quite yet and she wouldn't want to go to one yet either. I sure there are plenty of others in a similar situation and it would be nice to hear from others who can relate. Thank you!
     
  2. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,795
    Female
    Sorry to hear about your mum. It's very common for a PWD (person with dementia) to fail to realise there is anything wrong with them, it's a feature of the illness. My mother lost a lot of weight because she couldn't remember how to prepare food, or even that she needed to eat. It needed someone to provide the food then sit with her while she ate it - just providing the food wouldn't work without supervision. At that point I got daily carers in for several hours, fortunately she was fairly amenable to this (I lived a long distance away and did not do any hands-on care).

    Is your mother self-funding? Do and/or your sister have Lasting Power of Attorney?

    By the way you will hear it repeated endlessly here so I will be the first to say it - if you wait for a PWD to agree to do accept care/move to a care home, you will be waiting forever, so you will have to make decisions and implement them regardless of what she says.
     
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,210
    Nottinghamshire
    Welcome to Dementia Talking Point @SLA

    I live very close to where my dad lived so could check on him daily in the early stages. I know others on the forum are caring from a distance so they’ll be able to offer better suggestions than I can.

    One thing I found helped dad to accept carers was the idea that he’d be helping someone else by giving them a job they needed.

    Have you set up a Lasting Power of Attorney for you mum? Without one it will be difficult to manage your mum’s affairs as she deteriorates.
     
  4. dottydaisy

    dottydaisy New member

    Oct 22, 2019
    1
    Hi, me to - I have a 92 year old father-in-law in same situation diagnosed 3 months ago. We do live nearby which is helpful for him but not too sure where to go next with this. Haven't heard from anyone since the memory service signed him off with a diagnosis of mixed dementia. He has deteriorated quite a bit since the diagnosis and is barely managing but not quite ready for carers to come in as he cant understand why he would need them. Can't get a GP appointment. He is registered with a local hub for the proactive care for the frail elderly - its worth looking arround your area in case you have one of those. However, since the initial assessment with them they don't contact him and don't return my calls so I'm not sure what's proactive about that!

    Did you know your mum is now entitled to exemption from Council Tax? you need to get a form from her council and apply. She is also entitled to an attendance allowance - my FIL gets over £200 per month - its not means tested and you can use it on anything helpful or just save it up till you need it. There are befriending services that will send someone round regularly for a visit to help with loneliness, nothing has ever come of that for us but might be worth you looking into.

    Remember to be kind to yourself too. All the best x
     
  5. SLA

    SLA New member

    Dec 5, 2018
    8
    Female
    Thank you so much for that. Yes she is self-funding and my sister and I do have LPA for everything. And I totally agree we will need to act even when she doesn't agree.
     
  6. SLA

    SLA New member

    Dec 5, 2018
    8
    Female
    Thank you. Yes we have LPA for her on both financial and health affairs. She was enjoying having the carers last week particularly as they provided company (although she would hate the word carer and we have just said someone coming in to help her) but this week has been a total change in her.
     
  7. SLA

    SLA New member

    Dec 5, 2018
    8
    Female
    Thank you that's so helpful re council tax? I will look into that, I had no idea. Is she exempt now she has a diagnosis? Also re attendance allowance, I looked into that, but I thought that she had to be having help for at least 6 months before qualifying... is that not the case? She has only been having carers for the last two weeks...
     
  8. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    1,049
    Others will be along soon with better advice, but my mother-in-law had attendance allowance in place before the dementia diagnosis. It's about a need for help, not actually having the carers already in place. My mother-in-law was on the lower rate about a year before the official diagnosis. You will need attendance allowance in place before you can get the council tax exemption. You need to show the local authority proof from DWP . The AA forms look a little daunting, but it's worth the effort.
     
  9. VerityH

    VerityH Registered User

    Aug 21, 2018
    77
    When we initially did the AA forms, we contacted Age Concern, who sent somebody round who was used to filling in the forms and she was brilliant. She asked us the right questions and found out information which we might not have realised needed including in the form. Their service is free of charge, and makes it so much easier.
     
  10. SLA

    SLA New member

    Dec 5, 2018
    8
    Female
    Ok that's great to know. Thank you so much.
     
  11. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,795
    Female
    You are doing all the right things. I told my mother that 'a nice lady will come in to help you with things you find difficult, like carrying heavy shopping'.

    I wonder why she changed her mind. Was there was a different carer, did they do something she didn't like, or did she have some type of incident she wanted to hide? Something must have changed. Can you talk to the care director at the agency? My mother's care director was absolutely brilliant and always knew how to work things out.

    And yes you are right that she would have needed help for six months to get AA. But worth it in the future.
     
  12. Lynmax

    Lynmax Registered User

    Nov 1, 2016
    255
    My mum also lives on her own and we have installed a lot of technology and aids to help her. After we installed broadband at her house, we found loads of things we could do to support her - she has no idea!

    There is a call blocker on her phone so only trusted people I have input can phone her ( everyone else, including scammers, get a message telling them to phone me), we put covers over some sockets to stop her turning appliances off, we have security cameras and a door bell so we can vet and talk to everyone who calls and also check that mum has returned safely from her daily walk to the shops, there is a gas safety shut off valve on her gas cooker so she cannot use it unless we are there with the key to turn it on ( this prevents her leaving the gas on or putting the electric kettle on the hob) and next week we are having Hive installed so we can control her heating from our phones as she has started messing with the thermostat.

    As we have POA we also oversee her money, she can still use her debit card but forgets when she gets cash out so we have restricted the amount she can get out, we also keep her current account to a minimum to stop scammers - by scratching off the security number from the back of her card, she can no longer buy things over the phone.

    Luckily myself and my two siblings live fairly so we can take turns to call in daily ( no invisibles in my family!) but these measures really help to keep mum safe living independently. But I don't know what else we can do, I'm not sure there are any more technical gadgets we can install!
     
  13. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,210
    Nottinghamshire
    My understanding of Attendance Allowance is that the person needs help, not that they have it in place. So if you think your mum needed help 6 months ago you could still apply now @SLA .

    If I’d realised I’d have applied earlier for my dad. When I filled in the forms I put everything that dad needed help with (even if it was just reminding - e.g. to have a shave). Filling in the forms made me realise just how bad dad was..
     
  14. SLA

    SLA New member

    Dec 5, 2018
    8
    Female
    No, nothing different as far as I am aware! Think she is just in a different frame of mind this week!
     
  15. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,795
    Female
    @SLA there probably is a reason for her change in attitude, if only in her head - the difficulty is working out what it is and how you can get around it! PWDs tend to become quite secretive and hide issues.

    Agreed, but you'd need to be able to itemise the care which the person needed, which is difficult unless the person has been assessed by SS or you've been carrying out care/engaging carers to do it. (After my mother's first SS assessment, the SW told me to apply for AA despite the fact he assessed her as not yet needing any help - no idea how he thought that was going to work out!)
     
  16. SLA

    SLA New member

    Dec 5, 2018
    8
    Female
    And the good news is she happily accepted them again yesterday!! So who knows what next week will hold?!
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,719
    Female
    South coast
    When SS say that they dont need any help, what they mean is that they dont need any of the help that SS can provide.
    The Attendance Allowance form covers far, far more than SS are looking at. Things like, do you have to remind them to wash? Do they need someone to supervise cooking? Do they need someone to take them to the toilet? Do they need someone to watch over them to keep them safe? Do they have mobility problems (just using a stick or needing to push up on the arms of chairs to get up counts)?

    These are all questions that you know whether they need it or not - you dont need a formal SS assessment before applying for AA and with dementia, the sort of things that the form is asking about have usually been going on a long time (at least 6 months) before anyone even thinks about applying. Getting someone from Age UK is a very good idea, because it is very easy to downplay it all. The man from DWP told me himself to fill in the form assuming that it was the worst day from hell.
     
  18. my mum my world

    my mum my world New member

    Oct 23, 2019
    1
     
  19. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    413
    Female
    My mum lives with us, we care for her and we have claimed AA on her behalf. If you phone for the application form, the date the phone call was made will be recorded and the claim (if successful) will be backdated to that date.

    It took me a couple of days to complete; do a rough copy first and you will be surprised once you start how much information regarding your mum's capabilities (or lack of) come to mind.

    I sent the forms off and then read on this forum about emphasising the worst scenario that the PWD has and thought I hadn't done that, I had included exactly what mum can't - and can do.

    I must admit to feeling a little upset when Mum was awarded the higher rate, as I realised just how far down the road she really is; in my mind she is not that bad, and yes I know it was silly to get upset and I know she is not going to get better. (Secretly in my mind, my mum is the first person ever to recover from dementia).
     
  20. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,795
    Female
    Yes, but you left out the other bit of my post - someone needs to be aware of the PWD's needs, either through helping the person themselves or via a care plan. My mother lived on her own and had no help from anyone. I lived a long distance away, and she told both me and SS she didn't need any help (and they believed her). So I could not fill in an AA form. From what the OP has said, she is in a similar situation, and doesn't know enough about her mother's needs 6 months ago to itemise them for AA. But if she does - of course she can go ahead.

    I did apply for AA subsequently, when my mother had carers and I knew what type of help she needed.
     

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