1. pipsqueak26

    pipsqueak26 Registered User

    Jun 14, 2015
    2
    I am one of four siblings and unfortunately I live furthest away from my mother (300 miles) so not directly involved in her 'care'.
    My mum - in her 70's has been recently diagnosed with mixed dementia - vascular and alzhiemers. However my does not accept this diagnoses in the slightest.

    My older sister has been mums main carer for many years (due to her other illnesses) but the rest of the sibs and in-laws, grandchildren chip in and help where possible and if its accepted by my mum.


    Mum has very set views surrounding mental health (going back to her childhood where her grandmother was placed in a 'mental home' after the birth of her 3rd child due to mastitis and her grandmother never came out of that institution) - so my mum views mental health and the treatment of it as something you get locked away for, called mad and incompetent.
    Mum thinks that the whole family have a conspiracy against her and we have all managed to convince the doctors (who have also told her that the family are conspiring against her!) to call her 'mad'.

    Unfortunately mums worst traits are coming out and its very difficult to discern what is and isn't the dementia -she seems to focus on the adult males in the family - my brother and my brother in law -accusing them of stealing things -money, feather dusters, books - saying things about her to other people etc. (Neither of these males would steal anything). She can also be extremely nasty and vile about the rest of the family (and neighbours) - she seems to try to play one of against the other, she will deny outright what she has said seconds later (it will be you lying about what she said).
    My older sister (main carer) finds it all very difficult and is loaded with guilt as she think she should be doing more for mum, should've noticed things before etc.

    My dementia nurse has been out to mum twice (sister in law was wth mum at those visits)- however mum refuses to listen to them and seems to put on a great 'act' for their benefit. She insists that the nurse has told her she is fine, she doesn't have anything wrong with her etc.
    The nurse (I may be using the wrong job title for that person) said that mum could be offered medication to help her - however mum refused and rightly they can't force mum to take it - or accept her diagnoses.
    On the third scheduled visit siser in law could not attend and so no-one knows whether the nurse was able to visit with mum (mum said she was going to lock the door and not answer it if they came).

    the nurse had given SIL his contact details and said that the family could contact him for advice or a chat (observing confidentiality about mum of course) -however - he hasn't returned any of our attempts to contact him -( I have tried twice - as I just wanted some general information about how to 'handle' some of the conversations I have with mum -my sister has tried three times and my SIL has tried twice - this is over the course of that last 5 months).


    I think this not knowing what to expect - in terms of mums diagnoses - the progress of the dementia etc, what to expect from the support team visiting mum, how to handle mum not accepting the diagnoses and the nastiness and accusations. How to support my sister who is the main carer, as I know she gets so upset and feeling full of guilt, frustrated etc


    Any support or advice would be great. Any links to signpost my sister (or rest of the family too etc)
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,765
    Merseyside
    Welcome to Tp:)

    My Dad has vascular dementia & has become very nasty & aggressive which is in of the traits of vas dementia.

    Accusing people of lying & stealing things is sadly also very common.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,331
    Female
    South coast
    Hi pipsqueak and welcome to TP.

    What you are describing is typical of dementia. I had exactly the same problems with mum - the total inability to accept the diagnosis, the accusations of lying, the paranoia about everything being a conspiracy, the nastiness, the arguing with neighbours, delusions, denying what she has said and done. The list is endless :(

    I think it comes as a shock because no-one talks about this aspect of dementia. The common perception is of a benign little old lady/man who is forgetful, but its a load more.

    You might find these factsheets helpful.
    http://www.alzheimers.org.uk/site/s...site/scripts/documents_info.php?documentID=84
    Also google dementia Teepa Snow (an expert in dementia) - there is loads of stuff.

    You might also find this thread on compassionate communication helpful

    http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired
     
  4. canary

    canary Registered User

    Feb 25, 2014
    9,331
    Female
    South coast
    Bother, the factsheets link doesnt seem to work

    Go to the tabs at the top of the page and select
    Alzheimers Society resources - Alzheimers Society factsheets (dropdown menu) - click on see full list of factsheets - scroll down list

    I tried to give you links to "After a diagnosis" and "Understanding and supporting a person with dementia", but have a look to see if there is anything that might interest you
     
  5. pipsqueak26

    pipsqueak26 Registered User

    Jun 14, 2015
    2
    Thank you so much for the quick responses - its much appreciated.:)

    I have been browsing these forums for a while now and just plucked up the courage to post. I really didn't want to make my mum sound horrible - she isn't really (although she has always had that 'element' about her) - she is a lovely lady with a heart of gold and she has been a great mum. She is my mum and I love her very much and just want the best for her. Its very hard to see her like this and not accepting help :( which she clearly needs.

    The nastiness is awful - as you say people tend not to talk about this or gloss over it, it hurts to hear her talk about my siblings (and in-laws)/family the way she does and I am under no illusion that I am excluded from the way she talks. I first noticed something 'not right' with mum about 6 years ago when she'd come up to stay with me and my family - she was accusing me then (in front of my very young children) of stealing stuff out her suitcase (like her clipboard) and saying some awful awful things to me.
    Mum has also behaved very bizarrely over the last few years towards her neighbours - she has soaked one of them with a hose (purposely) whilst the were cutting the lawn wth an electric mower - because she believed they were spreading rumours about her.


    She does 'manage' well enough by herself - although my sister has noticed she doesn't eat much or her personal hygiene isn't what it was at all. Mum has also socially isolated herself over the last few years and refuses to even entertain the idea of getting along to groups, having someone in to visit her or help her, she is housebound (unless she has help to go out) due to her other illnesses. She does have a mobility scooter (Via a scheme) but hasn't been out on it for a least a couple of years and to be honest it scares me silly the thought of her out on it on her own.

    I am also extremely concerned about my sister and her wellbeing too.


    I will check those links (and forward t my sister)
     
  6. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,765
    Merseyside
    Tell your sister to join here too.
     
  7. Beate

    Beate Registered User

    May 21, 2014
    11,489
    Female
    London
  8. Coope2j

    Coope2j Registered User

    Jun 12, 2015
    2
    Carer and Information Support Programme - CRISP

    My mum was diagnosed with mixed Dementia in March.
    We were offered a place on a Carer and Information Support programme.

    This is run by the Alzheimers Society, one day a week for 5 weeks.
    There was 10 on the course each going along their own journey but the amount of support you get really helps, loads of information, lots of peer support.

    Legal advice, advice on caring, visits from Citizens Advice, local solicitors.

    Ring the Alzheimers Society, ask them about the support program.
    If you get the chance of a place take it, it can be tough and everyone has a wobble and a weep but it really is worth it.
     

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