When does self denial and neglect get too much and state steps in

Discussion in 'I care for a person with dementia' started by LHS, Jun 16, 2019.

  1. LHS

    LHS Registered User

    Oct 5, 2018
    59
    My mum is 100% in denial about her needs. At what point does the state step in and say that she MUST have support visits?
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,833
    N Ireland
    I notice that many people have read this question but you haven't received a reply to it yet. I would guess that this may be partly due to the fact that the harshness of the reality is that no one is likely to step in until a crisis develops and investigation thereof results in a determination that capacity has been lost so decisions will have to be made by another.

    It may be worth your while contacting Social Services(SS) and telling them that your mum is a vulnerable adult to whom they owe a duty of care and that you are not prepared to help. You can't be forced to help so it may put the ball into their court. I'm sure that this would be a hard thing to do but as long as you are involved it will probably be left to you.

    It may be worth talking to the experts on the helpline as they may be able to point you in the right direction and tell you the best wording to use when dealing with SS.

    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,742
    Female
    Scotland
    Yes @karaokePete is right. No one can force her to accept help until a crisis occurs and she falls, becomes ill or needs sectioning etc. Carers who attempt to help someone who objects strongly can have a very hard time of it.
     
  4. Palerider

    Palerider Registered User

    Aug 9, 2015
    429
    Male
    North West
    Definately contact the SS, if nothing else they will assess. They may consider 'best interests' if they feel your mum is neglected or at risk, which she probably won't like but at least it willl mean that something is put into place.

    Its tough when a loved one with dementia won't let you help them. I just do what I can on bad days. Luckily we now have carers, so when I'm working I know someone is coming in to keep mum going with her meals and check she's ok.
     
  5. LHS

    LHS Registered User

    Oct 5, 2018
    59
    Thank you for your replies. Mum is in the overall care system so to speak. She has already fallen several times and on many occasions has been starving which I think has contributed to her feeling dizzy and falling. She insists that she can still cook and still eats well but that is just complete and utter rubbish. I go round as often as I can and cook meals or leave food that she can just pick up and eat without preparation or order her a takeaway but it is not enough. I work full time and live 45 mins drive away. Sometimes she just throws perfectly good food into the bin and the only time I know she eats is if I or someone else directly observes her eat. When she has food in front of her she wolfs it down and clears the plate.

    She has just spent a week in hospital after a bad fall and is getting one lunchtime time visit a day now at home as part of the discharge process which she is grudgingly putting up with. This hospital home support is only for a couple of weeks and then I will need to put in a private care arrangement which in fact I'd already teed up but then mum went into hospital. The carers have already said to me they think my mum needs at least two visits a day but I know that if this was suggested now to my mum she would just refuse all the help and prevent the carers from entering her house altogether. So I am going to set up the private care arrangement and simply continue it on from the Temporary Hospital discharge arrangement and see if eventually my mum runs out of resistance to it. My biggest fear is that she's going to refuse them entry and have nothing to eat, fall etc. Hence my question about when does the state step in to say enough is enough. I cant cope with this turmoil much more, god knows how my mum faces each day. There is now a community mental health worker/social worker involved but it looks like the msntra is to respect the persons wishes until they literally fall.
     
  6. Palerider

    Palerider Registered User

    Aug 9, 2015
    429
    Male
    North West
    We are the same at the moment with mum putting up resistance, but the carers have been very good I have to say and persisted. Mum is slowly coming round. I suspect in another weeks time she won't let them leave as she gets chatty with them -always the way -a storm in a tea cup with mum. I hope it works out for you and mum.
     
  7. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,067
    Could you get a key safe fitted so that the carers can let themselves in? These are reasonably cheap and easy to fit - I fitted one myself for Mum - and that way you will have peace of mind that the carers will be able to access the house to feed your Mum and check that she is safe.
     
  8. Demi Jones

    Demi Jones New member

    Jun 14, 2019
    3
    My mum is the same,a recent visit to the hospital made it clear she needed 24 hour care due to her wandering at night and the aggression they said it was up to me as i had power of attorney and left me to it,so many visit's to homes and assessment i found one which she is now at, she will not speak to me now say's it's my fault she is there and is very aggressive towards me i feel so guilty.
     
  9. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    398
    Don’t feel guilty, you did what is best and at least she is safe now. Always try to think you’ve done the right thing, and that you’ve done it for a reason
     
  10. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,067
    Welcome to the forum Demi. You're in a difficult situation at the moment. Something that might help is to tell your Mum that she is in the home because the doctor says that she needs to convalesce for a while. Perhaps the care home staff could help by letting her know that she is there until the doctor says she is better? People with dementia can sometimes respond better to those in authority and if she thinks she is there because the doctor said so, rather than because you put her there, then the anger might be directed away from you. As your Mum was aggressive prior to going to the home though it might also be worth asking for a medication review - the GP can request input from the older persons mental health team as there may be medication which could help with her aggression if there is no physical cause for it (eg pain).
     
  11. LHS

    LHS Registered User

    Oct 5, 2018
    59
    Hi demi

    I am so sorry to hear of the situation with your mum. What you describe is what I am fearing may happen with my mum. At the moment I am nudging and cajoling Mum to continue to accept lunchtime visits. I know that if I push her too far she is likely to turn around and snap at me and refuse any external support whatsoever. I would be broken Hearted if mum turned on me in the way that you describe with your mum but from your words it would seem that our mum's share a very similar defiant personality. The only other option would be to give in to mum's wishes and withdraw all external support and let her go hungry, fall and then repeat. Any option seems to bring unhappiness in some way to my mum, trying to balance her wishes against her actual needs is impossible.
     
  12. silversea2020

    silversea2020 Registered User

    May 12, 2019
    81
    I was in a similar situation to you. SS had a keysafe fitted so carers could let themselves in, I prepared & froze all meals so carers could heat up etc, like you, I was a 40 min drive away & went over 3 times a week - I worked plus looking after grandchild - it was a very tough time so I really empathise. It was a huge relief when my mum finally went into a care home. I would ring SS and tell them that your mum is deteriorating and that you cannot care for her as you live a distance awayand that there are safeguarding issues with your mum i.e falling risk and that the LA have a duty of care to look after your mum. Sometimes you just have to make it clear to SS that you will not carry on any longer. I hope you manage to speak to someone - let us know how you get on
     
  13. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    Yes, that's about right I'm afraid. Has she been assessed as still having capacity?

    You may find she does get used to the carers as the weeks go on. When the private care arrangement starts, it will be really helpful if there is a carer she particularly likes and who can be on the rota regularly. My mother really took to a couple of her regular carers - I never called them carers, I just said a nice lady was coming to help her with things she found difficult like carrying heavy shopping (obviously they did a whole lot more than carrying shopping).

    A key safe is a very good idea. However depending on the type of lock your mother could still lock the carers out even if they have a key available, so you may need to consider changing the lock. And even if they get inside the house, she can still refuse care if that's her frame of mind.
     
  14. Champers

    Champers Registered User

    Jan 3, 2019
    94
    Definitely fit a key safe, it’ll make a huge difference to her care. My mother has reasonable days and really stroppy days, when if she had control of entry, no one would be able to assist at all.

    She’s exactly the same in as much as she’s losing weight but adamant that she cooks herself a full meal every day and does her own shopping (hasn’t for over a year!) As I live a couple of hours away, I’ve arranged meals on wheels (sadly, not all areas have them now) so I know at least there is a hot meal in front of her. Whenever I’m there and it’s delivered, she kicks off about about disgusting it is - not sure if that’s for my benefit - but even if she eats the pudding, I know she’s had something.

    The same with the carers; I’ve arranged a daily visit to ensure she takes her medication. Sometimes she’s biddable, sometimes she throws a tantrum about their visits, shouting that she has never needed tablets and that she’s not an idiot so why do they come?

    Like yourself, sadly, I think we’re just waiting for a crisis - then positive steps can be made to transfer her to residential care.

    Take care, you’re not alone. X
     

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