1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    Just trying this to see if there is any help available to me. My mother definitely has dementia but is undiagnosed because she refuses to go to the memory clinic. I have been concerned about her for over a year but she is now worse, although still in the very early stages. She refuses all help, will not allow me to get carers to support her with bathing (she was recently stuck in the bath for over 4 hours), support with meals and cleaning. She is not eating properly and refuses all offers of help from me. She will not allow me to do any house cleaning for her and does not cooperate with me at all. If her GP now refers her for any reason he mentions her memory problems. He has spoken to her very kindly and firmly to tell her not to get in the bath anymore (she's ignoring that) and that she must eat and made suggestions about ready meals; meals on wheels etc. I have been shopping with her to get some quality ready meals: they remain in the freezer. Our relationship has been poor for as long as I can remember and now I simply do not know what to do. What should I try to do for her to ensure that she is safe? (if she allows it of course). If someone would just tell me what to do I could have a go at doing it. But I will not do personal care. I am looking after her out of duty; but I am very worried and concerned for her and wish she would help me to help her.
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello @Sophieoliver

    I know it may sound really cruel but do you think you could stay away from your mother , at least for a few days. It is possible she might realise she needs your help.

    Other than that the National Dementia Helpline may have some better ways of helping you cope.

    National Dementia Helpline
    0300 222 11 22
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm
  3. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    Many thanks for a reply. I have had to withdraw because of the effect this is having on my mental health; I am struggling to fight off depression setting in.
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Have you discussed this feeling with your GP. You don't need to struggle alone with these feelings. It sounds as if you are seeing a GP about your mother but not about yourself.
  5. Dill

    Dill Registered User

    Feb 26, 2011
    Hi @Sophieoliver

    Maybe you could try something I did with my Dad some years ago. Whilst chatting to her mention a 'friend' of yours that has had somebody in just to help tidy round a bit and have a chat with, and it left your 'friend' with so much more free time. It might open a door to getting carers in or may not work. You sound at the end of your tether, do as Grannie G suggests and chat to the doctor for some help for you, just telling him will help you get a bit of clarity maybe. Take care of yourself.
  6. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    Thanks. I can't see that they can help at all, either mum or me. There is no answer other than waiting for Mum to see sense. I just hope nothing too bad happens before we get to that point. Even if she were to go to the memory clinic I doubt very much that she would engage with any help. The only thing is that she may need a formal diagnosis before any kind of help would be provided or any benefits like attendance allowance to help us pay for some help. Many thanks for replying.
  7. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @Sophieoliver, welcome to TP.

    I have read great things about the Admiral Nurses who have a help line. Maybe it would be worth while taking a look at their web-site and thinking about giving them a ring.

    It may be better to make contact with someone in case waiting for a crisis results in things getting out of control.

    This link will take you to the site https://www.dementiauk.org/dementia-uk-helpline-extends-hours/
  8. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi @Sophieoliver
    a warm welcome from me too
    even though your mum doesn't have a diagnosis of dementia, you can contact her Local Authority Adult Services and tell them that you are concerned about her safety, outlining all the things you mention in your post
    from your description she is clearly a 'vulnerable adult' who is 'at risk of harm' due to self neglect and her inability to use the bath safely, so as the LA have the 'duty of care' they need to make an assessment of her care needs (use those phrases in '..' as they should react to them)
    of course your mum can refuse to engage with them, and if she is considered to still have capacity, the LA cannot force her to accept support, but at least you will have brought her to their attention - and there is nothing to stop you contacting them again when you see a deterioration in her situation - should it be considered at some point that she no longer has capacity, then a 'best interests' meeting can be called and matters taken out of her hands
    same with the GP, who does sound to be trying to get your mum some help, you can keep them uptodate so should the chance come they have all the info they need
    and you definitely must take care of yourself - you have been keeping watch over your mum, if she will not let you help, that is all you can do, which is so very hard on you
    keep posting - hopefully it helps to share your worries
  9. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    #9 Sophieoliver, Sep 3, 2018
    Last edited by a moderator: Sep 4, 2018
    Thanks to everyone. Mum has been referred to social services: they tell me they have no idea how long their waiting list is ... Although, having given consent to be referred to them and carers agency she has now refused this I am still leaving her name at SS. I am hoping that, with their expertise, we might be able to move forward. I have POA for both finance and health and welfare but mum definitely has capacity at the moment. This does, though, give me access to medical staff and information. I want to keep her living in her flat that she likes but it is independent living so to stay there she will definitely soon need he
  10. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    My OH has an aversion to care workers coming in, but will accept them to be polite and helpful. She was also flip flopping when they started. If you have Social Services coming in the next month or two you should certainly keep the door open, Sophie.
    Of course, if you can be there when the assessment is being made you can prompt and nudge your mum in the right direction. I know it sounds a little naughty and if she digs her heels in you have to relent, but it has to be done for your sake and for hers. Do you have or have had a carers assessment ? Sorry, I missed your earlier thread.
  11. witts1973

    witts1973 Registered User

    Jun 20, 2018
    Leamington Spa
    I look after my mother who has lost her mobility and she has carers that visit through the day to do the things I can't do(Bed wash and pad changes),I speak to the girls that visit and ask them about the other people that they visit,a lot of those people live alone and are deemed to be safe to do so by SS and some of them are in hospital beds,the carers will cook meals and tidy,sit for companionship calls and shop.
    I hope that this helps you to see that it's possible to stay at home with support,I wish your mother and yourself all the best
  12. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    Many thanks. I have not had a carers assessment just yet; it does seem pointless irritation to Mum right now. I have had contact with two agencies and will get back to one of them when the time is right. I guess for now it is just a case of not trying to reason or argue with her as she can no longer reason (she was never very good at that anyway, it's just worse now) but that is challenging when she talks complete nonsense but to her it's sensible ... Just go along with her and say 'Mmmm' and 'Oh, really' and just keep a general eye on things.
  13. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    Many thanks for all those who have taken time to reply and offer helpful suggestions
  14. Scared1

    Scared1 Registered User

    Sep 8, 2018
    Hi my mum had denentia from 65 till 76. She passed away ...
    Sorting benefits were easy because she was really deep into it..
    Now my husband had stage 1-2 vascular dementia.
    Its so difficult regarding benefits because he knows he has dementia.
    He had several strokes more of tia.
    Although his memory for faces places and tablet taking loosing things past events and switching over from recall is really slow how on earth can i apply for benefits for him when other things are still managable. I dont know how to start the ball rolling.telling him benefits will be needed.
  15. Scared1

    Scared1 Registered User

    Sep 8, 2018
  16. kindred

    kindred Registered User

    Apr 8, 2018
    I got AAllowance for my OH when he was just about managable. It's worth trying. Certainly I emphasised that I could not leave him for very long, and he needed my help during the night, and to access dressing and washing. It's worth a try, sweetheart. Warmest, Geraldine (Kindred).
  17. Scared1

    Scared1 Registered User

    Sep 8, 2018
    Aw thanks i guess doing the forms is a final acceptance and its hard xx
  18. Scared1

    Scared1 Registered User

    Sep 8, 2018
    My husbands dementia is so different.showings frustration anger mood swings unreasoning nasty on times so i guess im in for a rough time my mum was funny hunourous and careing in the first 3 years .but hes empty of all emotional attatchment .
  19. canary

    canary Registered User

    Feb 25, 2014
    South coast
    That sounds like there is damage in the frontal lobes
  20. AliceA

    AliceA Registered User

    May 27, 2016
    It is very hard. Please consider asking Age Uk to help with the forms. I used them and found they have a way of answering where we often find we put a gloss on it all as it seems disloyal. It took me three years to claim the Council Tax reduction simply because I could not bear the phrase on the form. It put a label we dit not like.
    The extra funds do help to do our very best to care. ❤️

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