I don't know how to help when she's in denial

Discussion in 'Welcome and how to use Dementia Talking Point' started by molly88, Jan 5, 2016.

  1. molly88

    molly88 Registered User

    Feb 5, 2015
    Hi everyone, my Nan was diagnosed with vascular dementia last year but over the last 3 months she has gotten worse. I'm getting so frustrated over the relaxed nature of the rest of the family not doing anything to help. A year has passed since her diagnosis and nothing has been done about it, she hasn't seen or heard from a doctor since! No trips to the doctors, no medication, no help...nothing.
    The hardest thing about it is that my Nan is in denial, she says there is nothing wrong with her. Whenever I try to talk to her, which I do in a very soft and cautious way when the moment feels right she just goes all quiet and doesn't speak. I'm very close to my Nan and I can tell she's very much aware she has it but just doesn't want to talk about it. It's so difficult to help her when she won't accept the help!

    I managed to get her booked in with a doctor who specialises in mental health yesterday and my Mum went with her. Apparently everything went really well and the doctor was brilliant with my Nan and she seemed to understand and accept what is happening to her. Whether she'll remember it is a different story, I rang a few hours later to ask how the doctors went and she'd forgotten my Mum was with her and said the doctor had told her she was fine . She is having further tests and has been advised to take Asprin for the time being until they get the results back and they can give her proper medication.

    That's a little bit about my Nan. I was hoping someone could offer some advice on where to go from here and what help she could get. She will continue to get worse, this I'm aware of but what can I do to help her when she's so stubborn and won't accept the help easily? I'm terrified she's going to deteriorate quickly if she just ignores it. She's retired and spends her days alone. I've recommended going to social groups to meet new people but she refuses to, I think the thought scares her. I've mentioned about writing a diary, she pulls a face like it's a ridiculous idea...I just feel so helpless and stuck . It breaks my heart to see her so confused, I can see in her face how tired she is with it all.

    I hope to hear from someone soon!
  2. marionq

    marionq Registered User

    Apr 24, 2013
    #2 marionq, Jan 5, 2016
    Last edited: Jan 5, 2016
    She would probably love day centre where there are other older people with and without dementia. They have lots of activities and entertainment and a hot lunch for a small sum. Ask her CPN or doctor about referring her or phone round the local ones and put her on a waiting list. She will be picked up and brought back by bus. I am delighted to see all the older ladies sitting together and chatting when my husband gets on his bus.

    Meant to say that the first few times you could take her there and sit in with her for an hour. Gradually you'll be able to let her go off on her own.
  3. Quilty

    Quilty Registered User

    Aug 28, 2014
    I called it a "club" rather than a day care centre. If you find the right one she might love it.

    You cant make her face reality in the way you want so all you can do is adapt your approach. Drugs can slow dementia but the patient has a choice. Its very hard but you gran sees life very differently to you. Many people with dementia just ignore it and carry on. Based on what I know, I dont blame them. Its a very scary thing to look straight on.

    Deal with each little problem that comes along and try not to think too far ahead. Has power of attorney etc been set up? Do that if you can as it saves a lot of problems later.
  4. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    Hullo ther Molly. Sorry to read of your nan and her horrible diagnosis. I know how hard it is to see someone you love struggling with basic conversation and being in denial about it. OH gets very tired very easily and frustrated with it all too.

    Your nan sounds like my OH, she refuses to get involved in social groups too. She says she does not like old people, she's 81. It probably is fear of new situations and fear of her own old age.

    Anyway, just getting out for a cup of tea and a teacake helps OH. Not sure if that is of any interest to your nan, but best I can offer.

    Best wishes, Rob
  5. Kitty69

    Kitty69 Registered User

    Jan 5, 2016
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    You might find this link useful
    it was a real eye-opener for me and I keep it on the fridge to remind myself that I have to change my approach lol

    Also there are some practical things you can do - some of them may be useful now and some you might want to tuck away for later

    You can phone Social Services Adult Care Duty Desk and ask for an assessment if there have been no recommendations from the clinic - services like carers visiting to help with the daily routine/personal care or day care that should be an option - a day centre where she can go for lunch and activities. As well as our social services centre we also have Crossroads Day Centre where people can go for up to 3 days

    It is worth googling Dementia activities + your area to see what is going on. There is probably a fair bit but you need to search for it. Some care homes also do 'day care' which can be useful but I would try the day centres first. But the helplines will help you on services in your area and so will your local carers organisation

    If you are looking after her then you can also ask for a carers assessment - this will give you a break and give you some 'free' hours of help possibly. it might seem early days to be thinking of a 'break' but a few hours here and there is a good idea from as early on as you can.

    If you are not already getting it do apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day and write down the help that she needs (not the help that she gets but what she NEEDS). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask Age UK are really good at helping with assessing what benefits you can claim and then they also help you fill in the forms - someone will come to your house. Age UK are also very good at practical advice and help - Age UK Advice line free national advice line that is open 365 days a year 24 hours a day. To talk to someone, just call 0800 169 2081.

    I would strongly advise you to join your local carers organisation - they usually have a carers cafe (and so do Alzheimers society in some areas) and it is worth a morning off to go and find out what help there is in your area over a cup of coffee - lots of friendship and support face to face and everyone in the same boat.

    If there are issues with incontinence all areas have a continence service - you will need to look up your Trust or google your area plus Continence Service. The continence nurses we have had have been wonderful and pads are supplied free by the NHS.

    The Dementia helpline is a useful number to have

    Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

    The Helpline is usually open from:
    9am - 8pm Monday to Wednesday
    9am - 5pm on Thursday and Friday
    10am - 4pm on Saturday and Sunday

    TP is great, come back and ask questions anytime - someone will know or can give practical tips or has had experience of it.
    Welcome to TP xxxx
  7. molly88

    molly88 Registered User

    Feb 5, 2015
    Thank you for your kind words

    Thank you everyone for your replies and your kind words it's a comfort :).

    I have mentioned to her about going to some kind of group so she can mingle with other people and to keep her occupied but she said she didn't want to and like your OH Rob she also says it full of old people! :confused: I can tell from her face that the idea scares her, I'm guessing it's anxiety of doing something different. I didn't know there was a day centre they could go to so thank you for recommending that Marionq, I'll have a go at mentioning it to her when the times right. It's like treading on eggshells at the moment because I don't want her to get upset or stressed out. I would love nothing more than for her to socialise, I know it would do her the world of good. Any ideas on how to approach the subject to her without her thinking I'm trying to send her off to a day care full of old people who are in the same situation as her?

    Kitty69 I feel your pain, it's so difficult to know what to do when you know very little about the disease and the support out there especially when you don't know where to look for that support! Hence why I've come on here. It's a very isolating experience to go through, it makes you feel helpless seeing someone you love so much become so vulnerable. I hope you manage to get some support with your mother.
  8. molly88

    molly88 Registered User

    Feb 5, 2015
    Fizzie & Quilty

    Fizzie, thank you so much for all the info you have sent across, this is a massive help. There's so much to take in I don't know where to start! Might have to print these off and take them home (I'm in work). I think I need to firstly attempt to persuade my Nan to go to one of these day centres and go along with her for support. I love old people anyway so I'd be more than happy with that :)

    Quilty, a power of attorney hasn't yet been set up. It's something I'm conscious of and know it needs to be sorted before she gets worse. How do I go about doing this? I don't know how on earth I'm going to bring this subject up with my Nan, she's very independent and quite stubborn so it's going to be very difficult for her to let someone else take control of things.

    Thanks again everyone
  9. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    Hello Molly and Kitty

    It wonder if it might be useful to put yourself in your grandmothers' shoes for a moment and consider how you would feel if someone you loved sat you down and told you (more than once?) that you had dementia.

    Two scenarios come to mind:

    1. You have no idea what they are talking about as you are managing fine in your eyes. In fact you might just not be remembering that you weren't managing fine ten minutes ago.

    If they don't have the capacity to understand the implications, then offering the medical explanation is clearly a waste of time and potentially upsetting 'in the moment'.

    Or 2. Dementia? Are they saying I'm going senile? It's incurable isn't it and, oh, I remember what happened with my mum/ gran. She used to sit slumped in the corner, sleeping all day in her chair.. Surely that's not going to happen to me?

    If they still have the capacity to understand the implications of what you're telling them, please consider how scary that must be.

    I have told my family that if I am diagnosed with it in the future, they are are to ensure I get whatever treatment is available, but actually, I would rather they didn't tell me unless I specifically asked. I know not everyone feels this way and they would wish to be told, but I know I would be utterly devastated.

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