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
    I doubt that there is anything that anyone can say but I'm having a go ...
    My mother has dementia and will not admit it. She will not go to the memory clinic (so I'm guessing that she has dementia). She will not accept any help at all - not from me personally, from Social Services or even listen to advice so that she can put things into place that will help her help herself with her memory. She was stuck in her bath for over 4 hours a few months ago and at last I got her assessed by SS and an occupational therapist. They deemed her to be coping and to have capacity. They said she was unsafe using the bath and toilet. She has been advised, following the bath incident, not to use the bath. She will not allow a carer to come in and help. She will not accept the installation of any safety aids/bars as advised by the OT. (She is bathing again and took great delight in telling me she was using the bath once again which tells me she knows exactly what she is doing). She refuses to write down any appointments or arrangements and thus puts others out because the arrangements go wrong. She has always been difficult and thinks that the world revolves around her. She asks me to give her examples of how her memory has been at fault.

    I am finding it very very difficult to cope with her as I have a lifetime of difficulties with her to bring to the party. I have been depressed for the last 2 months and, after doing everything I can possibly think of to try to help her, realise that I have come to the end of the road. I am now trying not to worry about her and am leaving things to evolve as they will.

    I have a sister who will not help.

    I have two daughters and the three of us ensure that one of us has rung her each day to make sure she is OK and not in difficulties. (She also refuses to wear her emergency call button, so we are worried that if she should fall or hurt herself in some way she would not be able to summon help.) Dealing with her makes me ill, but I try to stick to it. I usually take a friend with me for moral support.

    When I see her I don't know what to talk about - I hear that one is not supposed to ask questions, or 'do you remember' ... conversation is almost impossible.

    My guess is that there is simply nothing whatsoever I can do; no-one can make anyone have treatment or get a diagnosis or co-operate. I think I just have to change my attitude and accept the situation.
  2. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    Yes sorry @Sophieoliver you will have to change your attitude. You won't convince her and sadly this is really common .

    My dad has dementia and cancer but he has absolutely no knowledge of either. I don't know if they make a conscious decision to forget what they don't like but forget it they do and nothing can convince them otherwise.

    There are lots of similar posts on here and sadly it is easier for all concerned to just agree with her.

    You will get other answers similar to mine and some good advice on here.

    Sorry that you find yourself here but it is a good and helpful place to come to .
  3. VickyTwin

    VickyTwin Registered User

    Oct 19, 2018
    I know this isn’t advice as such but I do completely see where you are coming from and it’s extremely difficult for you and your family. It’s incredibly stressful and feels like there is no light. I am going through a similar thing and it consumes me every moment of the day. I hope someone is able to help you
  4. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    Hi again @Sophieoliver me again

    It is very difficult to cope with especially if you are suffering from depression but if you feel your mum is unsafe in any way then you will have to get the social services back in again. You will need to tell them that you can no longer cope and they will have to take over. You can't let it make you ill and you also can't ignore it so you will have to inform SS or her GP that she is unsafe.

    Forget the sister who won't help, you can't make her as it is her choice. She is what we call an invisible here on talking point. They are very widespread and only serve to make you feel worse by not being there when it counts. Don't waste your time on her.

    Conversations can be awkward and I admit that I now resort to putting the TV on and using that for something to talk about or dad would just sit there.

    You can wash your hands of it all and I would not blame you at all because it is a thankless task but I think you should make one last effort and at least inform her GP of her situation. They won't discuss her with you but if you write a letter stating your concerns and all of what you have written on here then at least you are passing the buck and have done something other than just walk away. Email the surgery if that is easier (it may in fact be better) and then hopefully they may invite her for a check up or something similar and do the same to the social services as they are responsible not you.

    You obviously do care a lot about your mum or you would not have come here and I feel for you but you need to at least involve others.

    Don't let it get you down as she is not really your responsibility and having stuck by my dad through it all I can tell you that it is better to get help earlier rather than later because just knowing that someone else (even if it is the GP or SS) is involved will make you feel better about it because you can then step back and say that you have done your best.
  5. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    Sadly this sort of behaviour is extremely common. In fact you could be describing my MIL. Sorry to say sometimes you just have to take a backwards step and let a crisis happen. Not easy I admit. I'm sure others will be able to give better advice soon.
  6. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    @Sophieoliver I'm in a very similar place at the moment with my mother and it is horrible tough and seems never ending. Not a lot of practical help I can offer, but you are not alone {{hugs}}.
  7. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    Just to say thanks a lot for answering. It is helpful simply to see that this is common. Thanks for the hugs! I have never been good at accepting things; I always keep going thinking things will change. But, it the hardest thing, but I have to change.
  8. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    Thanks so much for taking time to reply. As I have said to others, just realising how common this is is helpful. I have now got to the point of taking a backward step. Many thanks.
  9. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    Thanks so much. I have informed her GP of the current situation and that she has been assessed and refuses all help; even refusing to have safety aids installed in the bathroom. I have visited the GP with her and he has told her not to use the bath unaided and to make sure she is eating properly. I don't think she can remember that though. I have no idea if she is eating or not; she doesn't appear to be losing weight. Her brother visits her twice a year and he was concerned after his last visit so I have informed him too. I think I have told everyone who needs to know. She lives in a McCarthy and Stone independent living apartment and the House Manager is also concerned about her and so she has been informed. Of course, the Manager is worried in case she puts other residents at risk and it is a condition of their lease that the apartment owner has to be able to live independently. As my friends keep telling me I have done all I can. So, I need to change my attitude and just leave things as they are. It is sort of waiting for the other shoe to fall ... I agree about the TV; when Wimbledon was on we had that on in the background and that was a great help but usually she doesn't have the TV on.
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
  11. Slugsta

    Slugsta Registered User

    Hi Sophieoliver and welcome to TP. I'm glad you have found us, but sorry that your situation is so difficult.

    Not admitting anything is wrong is really common PWDs (Persons With Dementia) and certainly makes things difficult for those trying to help! It is not 'denial' as such, it is actually a symptom of dementia itself. It is called 'anosagnosia' (not knowing that you don't know).
  12. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
  13. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    I'll have to print that out and keep reading it and checking it. I think I do all the DON'TS.
  14. MothersCarer

    MothersCarer Registered User

    Nov 13, 2014
    I don't know if this will help but this "refusal" to comply with things that are for a persons own safety are so frustrating. One thing that helped me was an Admiral Nurse explaining that the reason why my mother denied that she had any problems was that the place she was at in her head was one where she did not have the problems I could see. It helped me - didn't make it any easier but in a strange way I could stand back from the feeling that it was personal.
  15. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    Hi and thanks. That is most helpful. I will definitely remember (try to remember) that when I get frustrated. Many thanks
  16. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    New South Wales Australia
    After 18 months of dementia my husband still does not know he has it, and i don't use the word. Probably he can't retain they information anyway.
    I sometimes say 'your memory is bad' - (it's dreadful) , but I don't won't to distress him- if I have to get something through to him I might write it down- and he seems then to read it, and usually then , to know.
    Eg Sunday - conversation today
    he says: I'll wear my sandles to church.
    I say : we went this morning to church
    He says: I meant tomorrow -Sunday
    I say : but today is Sunday ! (Phew) .........
    Pause - Then I said : you can wear them next time we go to church
    He say : yes.
    It's pretty frustrating but we have to manage.
  17. Feistywoman

    Feistywoman Registered User

    Aug 11, 2018
    It sounds very familiar Sophie, I agree it is frustrating and at times you feel like you’re running through treacle. I have to say the link GrannyG put on has been invaluable for me although as you can tell from my earlier post it doesn’t always pan out well! Just remember you’re not alone in these challenges and frustrations, take comfort and strength wherever you can
  18. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    I've tried to reply to each post but not sure that I have managed it properly. Many thanks indeed for each one of you who has taken time and put effort into replying. I have read the link and can see that I've done it all wrong. I think what makes it harder is that my mother has always been very stubborn and difficult and so it's hard to see much difference! But now her comprehension and memory and confusion are bad; her grasp of money is poor. So I'm guessing she has some kind of dementia. My father had dementia and she did very little to help him (she only belittled him and took away his dignity) so I'm not anticipating that in any way she will accept help for herself. We ask her to write down appointments and arrangements but she refuses - and guess what! From now on I'm just going to talk to her about what I am doing, or other members of the family or anyone she might know; the weather; feeding the birds and so forth. No questions; no arguing; no reasoning. I've tried so hard to reason with her ... to no avail whatsoever. I would find it so much easier to deal with (well, a bit) if it had been diagnosed and I know for sure that she has the disease. And there might be some help available. I could override her and have the safety poles installed in the bathroom but I think that would seriously distress her and I don't think she is in imminent danger - although her practises are a bit worrying (like getting herself off the loo by leaning on the loo roll holder: one day it'll come off the wall ... and getting out of the bath by holding onto the sink - and accident waiting to happen I'd say).
  19. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    Things change @Sophieoliver I used to worry myself sick about dad using the shower. He doesn't use it any more so I don't worry about that, in fact I am glad, he does still have a wash so I can be thankful of that I suppose.

    Yes simple conversations are best but can become boring after a while but at least I know what's coming.
  20. Sophieoliver

    Sophieoliver Registered User

    Sep 2, 2018
    thanks @Duggies-girl. I'll just have to take things one day at a time. Hope things OK for you.

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