can adult social services refuse to care for my mother with dementia

Discussion in 'I have dementia' started by sandysan, Feb 1, 2016.

  1. sandysan

    sandysan Registered User

    Jul 12, 2014
    #1 sandysan, Feb 1, 2016
    Last edited by a moderator: Feb 1, 2016

    im struggling and getting so upset with adult social services who has emailed me to say that they will refuse to care or send carers into my mother , because of her abuse , which she cannot help ,
    they said that they will pass her food through the window and her shopping , how pathetic is that ,
    I cannot seem to find help from anyone I have been to the cab advice and they cant evenhelp me
    I am poa for my mother ,

    she is now in hospital as she had a fall and she had phnumonia , but she is on recovery from chest infection , she broke her ankle , and she is confused as the nurses have said , and she is being aggressive and abusive ,

    im very scared and I am getting depressed I don't know what to do or how to deal with it there is only me ,

    I don't want her to go into a home I want care for her in the community and wondered if she will be able to get 24 hour care in the community.
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    I know you want your mum in the community but is that what us best for your mum?
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I'm sorry to read about your situation and really feel for you and your mum. The arrangements Social Services have in place do seem unacceptable. Like Cat though I wonder if it's time to consider whether care in the community is the best for your mum. I have no personal experience of this but I would imagine it would be very difficult to obtain 24/7 care in the community. I would imagine your mum must have a Sicial Services Care Manager. I wondered if you could contact him/her and discuss your mum's needs. I would also think there would have to be a meeting before your mum is discharged from hospital.

    I realise how hard this must be when you are dealing with everything yourself.
  4. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    So sorry you are having such an awful time getting care for your Mum. I understand your wanting your Mum to remain in the community, it is something all carers wish for but unfortunately when behaviour becomes so challenging it becomes impossible and the right level of care can only be found within a care home specialising in challenging behaviour.

    My husband needed such care, it was not what I wanted but within weeks of him going into the nursing home that offered the care for challenging behaviour I knew that he was getting the level of care he needed and deserved.

    Please be open to all ideas as you move forward with your Mum and remember you are important too and need to be there for your Mum, not exhausted and tired because what you are looking for is not there.

    Take care.
  5. Beate

    Beate Registered User

    May 21, 2014
    I'm going to be brutal - the situation at home is untenable. She is violent and aggressive and SS don't offer adequate help. No one should be discharged from hospital without an adequate care plan in place. In your Mum's case, I wonder whether you could look into sectioning her due to her behaviour. She would go on a special ward for 28 days and have her medication looked at. It's very likely that she would go directly into a care home from there, and you should push for a CHC assessment. If your mother scored a Severe in Cognition and one in Behaviour for example, she would be eligible.

    Now is not the time to think what you want or what she might have wanted - it's time to act in your mother's best interest and find the safest place for her. Her home where she will continue to refuse care from inadequate agency carers is not it.
  6. Pete R

    Pete R Registered User

    Jul 26, 2014
    Hi Sandra,
    I remember reading your previous posts over the last couple of years and having just gone over them again I can see why SS have maybe decided there is only so much they can do to help especially if your Mother is still deemed to have capacity and continues to refuse help.

    You are never going to get 24 hour care other than in Care Home environment so if your Mothers capacity has changed and you are now PoA it may well be time to start working with SS and getting the help you know she needs.

    Not all care homes are bad and your Mother may well flourish in the different environment with full time care and support. It may well also be a way of you getting back the relationship you previously had.

    The difficult situation both you and your Mother are in cannot be left to continue. Please accept the help. You do not have to be alone in dealing with it.

  7. Quilty

    Quilty Registered User

    Aug 28, 2014
    The agression and hostility could be due to fear. She might feel safer with 24hr care and the only way to get that is to pay for it yourself or move her to a care home. You need her to be safe.
  8. sandysan

    sandysan Registered User

    Jul 12, 2014
    cant cope very depressed things have changed for my mom

    I don't know what to do or where to go I really need some help for me , mom is in hospital again she has had a fall and broke her ankle , now they are saying she had delirium as she has started hitting out now ,
    I went to see her last week in hospital , she was telling me she hates the sight of me , im the one who put her in hospital , she was pulling at my clothes and pushing hospital table into me ,

    I really love my mom altho she has been very horrible and cruel the things she says is on my mind all the time ,
    im scared when she dies , I don't want her to die , and them im going to be left blaming myself and thinking of all the things she said to me , and worst of all ending on bad friends because she says she hates me ,
    im scared to go visit her I don't want to see my mother like that , and I know she isn't going to get better ,
    im scared im really scared and depressed ,it scares me to and im thinking im going to go mad and crack up when she dies and I will be in a mental home , its torture

    any advice please
  9. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    Hi Sandysan,

    You really are now dealing with one of the most difficult times that dementia can throw at us as carers and for our loved ones. All your Mum does is down to dementia and how it is affecting her. She must feel really frightened, unable to understand and massively confused at what is happening around her.

    As much as you would like the care to take place in the community it will be difficult if not impossible.

    My husband needed care within a nursing home specialising in caring for those with challenging behaviour. He had one to one care 24 hours a day which was reduced to 12 hours a day once he felt safe and not so tormented by the disease. This was brought about by the level of care he received not by medication being overdone.

    It was not what I wanted but I soon realised that he needed this level of care and he also deserved to receive it. He was living a calmer and more pleasant life but it took a great deal of care from the carers to get him to this place and to keep him there.

    Please at least think about care within a care home and hopefully you can get your relationship with your Mum to a better place. It will never be the same, dementia won't let it, but it can be calmer and more pleasant a way of life for you and your Mum.

    Take care.
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi Sandysan

    what a situation you are both in - most people wouldn't even imagine this could happen - so it's no wonder you are so worried and so fearful

    Right now, you need to breathe - your mum is in the hospital and they will not be sending her anywhere immediately - and she will be being assessed to find what support she needs - she is being taken care of and so at the moment you can take some time to breathe, sleep and assess the whole situation

    I'm glad that you are able to come to TP to talk it all over
    is there anyone around you who can support you? maybe call the AS phoneline, they may be able to chat this through with you, and maybe ask if there is an advocate available to liaise between you and the hospital and Adult Services

    If you are worried about visiting your mum, maybe visit the hospital but ask to speak to the staff nurse and doctors on her ward so that you can get an update without her seeing you - then if she is more settled you might go visit her - it does seem that maybe at the moment she's not in a calm state of mind, and like teenagers, we often react worse to those we know are closest to us, so she erupts with you - it's not really personal (you know that deep down) - and so maybe she needs to NOT see you for a while

    Maybe if you go the hospital, visit the chapel - not necessarily for any religious reasons (though that may comfort you) just to find a sympathetic ear to listen to you - the chaplains also know how the hospital works and may be able to help you with contacting the right people there

    You've worked hard to look after your mum, but the dementia is making that oh so difficult now - it's not that you've done anything wrong or not done enough - she just now needs support from others too
    your mum is still your mum, she always will be - maybe, though, it's time to step back a little for your own health and state of mind - if others take on the day to day care, you will be more free to be her daughter and supervise her care, with time to be yourself too

    My dad has very challenging moments, which I couldn't have dealt with on my own - he's in a care home where they have got to know him and can support him - they take on the daily care and I visit to be his daughter and provide the love and little treats for him - it's not ideal but it works - he is in a safe environment and I can look after his affairs and create a good life for myself, which is what he always wanted for me

    Please find a way to let go a little and let your mum be looked after in the hospital - then see what is suggested for the future - easier for me to say I know
    You do understand that the things she says are just a way of her shouting at the dementia - each time an image of her like this comes into your mind deliberately replace it with a good memory from another time in your lives - you love her, she has always known that, when her time comes whatever else has been said is of miniscule importance next to that lifelong fact

    just breathe for a while - sometimes doing nothing but breathing is the best way to let things settle around you and lets you regroup to face whatever the future brings

    best wishes
  11. sandysan

    sandysan Registered User

    Jul 12, 2014
    24 hour care in the community can the hosptail refuse care in the community

    my mother is now in hospital with a lot of problems she has slight vascular dementia , she broke her ankle due to a falll , she is now in hospital the hospital wont allow me into see her , as i told the hospital off when i went to visit mom she was on a commode eating her food and more to it ,
    but as she has been in hosptal for 3 months nearly and is near to discharge can they refuse her to go back to her home , i dont want mom in a home and she doesnt want to go in a home she wants the care at her own home , but it would mean 24 hour care as she cannot get out of bed yet and obviously will be in need of nurses changeing her wet or soild bed

    please help im also power of attorney for health and welfare and property and finance ,

  12. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    I'm sorry to hear you and your mum are still having such difficulties.

    However, I suspect the feedback you will get back now will be just the same as before. Unless you or your mum can pay for 24 hour care yourselves, looking after her at home isn't going to be an option.

    Have you had a chance to take a look around any local care homes yet to see if any of them can meet her needs?
  13. canary

    canary Registered User

    Feb 25, 2014
    South coast
    If the hospital dont think that it will be safe for your mum to return to her home then, yes, they can refuse to send her back.
    Social Services will not pay for 24 hr care in the community, and TBH, your mum has consistently refused carers and has been aggressive towards them. I dont think this is going to change.

    I know that you dont want her to go into a care home, but I think the time has come to do what she needs, rather than what you and she wants. I get the feeling that if she went back to her home now it could easily be considered neglect - even with you trying to do as much as you can its like trying to hold the tide back.
  14. Carma

    Carma Registered User

    Feb 12, 2015
    Mum’s local area has short term residential rehab places for those not sufficiently ill to need hospital care while still unable to cope at home. It is worth seeing if this is available for your mother.
    I realise it is difficult to accept that a parent needs to move into permanent residential care , especially if she is against the idea, as we are currently in this situation, but it reaches the stage where her safety is the over-riding concern.
    Kind thoughts
  15. Beate

    Beate Registered User

    May 21, 2014
    Sorry if this offends but it does not seem as if you have taken anything on board that this community has said to you. It's all "I don't want and she doesn't want". That doesn't make it any more possible though and I think it's time you faced facts. Her safety and wellbeing has got to be your overriding concern, and if this means a care home, so be it. Unless you can afford to pay for it, no local authority will fund round the clock care at home for a belligerent uncooperative patient. Of course she doesn't want to go into a home - I don't know many people having willingly agreed to it. But it might be in her best interest, and for that reason you have to consider it.

    Having said that, I don't think a hospital has the right to refuse you access to her, especially if you have health & welfare LPA, so I would contact PALS and complain.
  16. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    There are some battles that cannot be won, and unfortunately, Sandysan, this is likely to be one of them.

    As has been said, SS will not fund that level of care at home, so it might be worth considering trying to come to some sort of compromise with them to decide on a suitable placement for your mother together. If you don't, the decision is likely to be taken out of your hands.

    Look at it this way. She has been in hospital for three months already. Moving to a suitable CH should give her a much better quality of life than she has at the moment in a hospital ward - 24/7 personal care (probably better than in the hospital, tbh) companionship, her own room. Perhaps tell her the move is for convalescence - that tends to be a more positive and acceptable reason for her generation.

    You are not putting her away, you are providing her with the specialist care she needs.

    But you need to start looking around the options asap or she could end up somewhere you don't like. The hospital will be under pressure to release the bed and if you don't find one, they will.
  17. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Have you seen this fact sheet particularly the part about hospital discharge.

    You may be able to get a free 6 week reablement/intermediate care package. In most circumstance this takes place in your own home but in some cases can be in a nursing home, particularly if it is expected that your mother will not remain bed bound.
  18. sandysan

    sandysan Registered User

    Jul 12, 2014
    chc funding nhs pays for care not the social

    hi maybe im not making myself clear here , mom has full chc funding , and im asking if she is entitled to care in her own home chc funnding is the hospital not social adult care services

  19. fizzie

    fizzie Registered User

    Jul 20, 2011
    I understand that in our area CHC funding can be used to fund care at home but it might vary from area to area I don't know
  20. sandysan

    sandysan Registered User

    Jul 12, 2014
    response chc funding via nhs

    i dont mean adult social care , i mean the funding of care from nhs is diffrent from social adult care , nhs funding is funded by the hospital to pay for her care in or out of a carehome as states on the alzhemiers sight i was wondering if they can refuse to care for her in her own home
    but i have my answer now thanks ,,which is YES you can have care in the commnity and the hospital chc funding will pay for it

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