Any advice would be grateful

[Kimmints1]

Hi all,I am new here. Il try make short.My mum is 89 pallative care, she has vascular dementia and heart failure and other problems with heart. She is housebound, hoisted from bed to chair.She is later stage demetia and severe heart failure.My sister is her sole carer, since she stopped carers going to help, and one of my daughters goes in 6 days a week to help, because myself and sister were doing caring but we ended up arguing constantly and it was unfair to my mum and dad, who is 85 with health problems too.I wonder, as I'm not even updated about mums health etc, and can only visit for minimal time, as my sister is very controlling and manipulative, and she reads everything on Google and even trys telling drs and nurses about mums needs, including her medication. The reason for this thread is to ask if anyone with there love one, has them in there chair all day, apart from to hoist to bed to change, and wake them up to reposition or get food and drink into them, and medication. My concern is my sister has been told about mums unable to swallow properly and when and if mum wants anything, but my sister pushes food and drink, she wakes my mum continually.Two weekends ago we had princess alice nurses out as mum was unconscious and had no food or drink for over 12 hours, The nurse told my sister not to put in chair but she did , and the nurse had to come back to mum and my sister had,on her own put her in chair.My worry is she is the keeping mum in chair all day from 8am to 8 pm, and keep waking her, moving her, getting food and drink down her, I understand she needs it but she doesn't give mum a rest.She won't give oxycodone slow release as she tried 1 tablet and my sister said it made mum breathless, she won't let the Dr give mum lorazepam as she said it does same, pallative nurse have told my sister, mum is deteriorating and will need mote than oxycodone liquid twice a day and paracetomol when my sister feels my mum needs.It upsets me as I know my.mum is suffering but my sister won't listen to anyone.any advice would be appreciated, sorry its so long Kim

I'm sorry, that's all pretty awful.

Can you look at palliative care in a hospice? Or even hospital?

It sounds as though being at home is not the right place for her now. If you believe your sister is making her worse, I'd report this to your mums district nursing team that you believe this is now wilful neglect and especially raise concerns about choking on or aspirating food.

That said, how is your Dad in this? What does he want? Can your mum say what she wants?

This is neglect, a safeguarding concern, maybe based on controlling behaviour or ignorance. you need to speak with her gp and the nurses, like pp said mum might be better and safer elsewhere. Does anyone have health poa.

I agree - you need to raise a safeguarding concern. And use those exact words 'safeguarding concern' when talking to professionals (the visiting nurses, and contact her GP and social services).

If you mum is not mobile there will be strict protocols to prevent pressure sores. If your sister is not adhering to these, and is withholding prescribed meds, then she is neglecting your mum's needs.

Whether tthere's health PoA or not, the ultimate responsibility for medical decisions is with the professional rather than the family.

Thank you for your replies.The problem I have is I have reported to social services previously, and for some reason they never even came out to see my mum,my sister spoke to them on the phone.I have the same dr as my mum, and I speak to her, and she has said my sister is very hard to talk to always talking as if my sister is a Dr. The Dr came last week as there was reason for concern, and she is my mum's pallative dr,but she said nothing to her. I am upset that no one has taken notice of me over the last year or so, and my mum is suffering.My Dad is a shell of a man, as my sister controls his every move.I take dad for appointments and she tells my dad not to tell me anything,your going to drs for blood tests, you ain't got to tell them nothing else.Through covid she stopped dad just walking up and down the road, as he has copd and needs exercise.He isn't allowed a opinion on my mum unless she asks him.if he trys saying anything, she argues with him.He is now at the point he says he doesn't say anything. He is very withdrawn, she won't let him go to day centre, she told him after covid finished, the centre was shut when infact it was opened up again.Mum wakes in night or she wakes mum to change pad and my sister puts main light on, if dad says about the light she tells him not to interfere.it is so cruel I have tried talking to her, as she made a promise 2 years ago, after dad came outof hospital that she would be different with dad but she's gone back to how she was.i don't know what to do.

Does she live with them?

Please write to the District Nurses, GP and Social Services in an email copied in to them all. Name it as serious as safeguarding concerns for both parents.

Ask specifically for a multi agency safeguarding meeting to be held and ask to attend.

Don't stop trying, get vocal. The more you sit back and worry about things being difficult, the worse you'll feel.

If you get no response within a few days, email again and ask to escalate to management. If in a week or so you've had no response, email them all again and include your MP. There's always a way to get attention but you'll have to be the loudest voice - louder than your sister.

Agree this should be considered as a safeguarding concern. I'm surprised the professionals involved have not reported it as such - do they see your sister as controlling or neglectful donyou think?
If your sister is not following advice on how to care for your mum, or denyng her access to care that she needs then this is neglect and or abuse. It may be that your sister has her own difficulties or anxieties that are driving this, but the effect on your mum is still the same. The possible risks are that this will he detrimental to her health, her emotional wellbeing, eg she may be in pain or experience skin breakdown through pressure sores.
Your local council Adult Social Care have the legal responsibility for Safeguarding - if there is reasonable cause to suspect that your mum is expriencing neglect or abuse and cannot act to protect herself then they have a duty to make enquiries about the situation under s42 Care Act and take whatever action is needed to safeguard her. I would start by contacting them to share your concerns.

Might be a long shot and extreme OP but you could try the Police? There are actual laws which cover wilful neglect by carers (not sure of the exact wording, I'm UK not not mainland England so the laws are slightly different). If no other service will listen to you, and if you have evidence of the things your sister is doing (withholding meds etc) then try the Police. Even if there is insufficient for any sort of prosecution, they should raise a safe-guarding concern which will be shared with partner agencies, that might make them sit up and take notice.

There are actual laws which cover wilful neglect by carers

And this also sounds as if it would fall under the more general coercive control law. Domestic abuse can be child to parent, as well as parent to child or partner to partner.

The problem with domestic abuse and the police is evidence. If mum can't give an account and dad is too frightened, the OPs account may not be sufficient for action. The OP also has to be willing to see it through to court for that to work and that may take years from beginning the end. Add in that other carers are also family member and it's complex and emotive for everyone.

That sort of criminal investigation a huge disruption in any family, but right now it's probably not the immediate answer to making mum safe and comfortable during palliative treatment. Dad's needs are hugely important, but right now it's mum who needs the urgent interventions.

If OP can start with that other things can follow.

Has anyone got power of attorney, are their cameras in the house that monitor your sisters behaviour. Social services safeguarding can find emergency placements for someone who is at risk of neglect.

Thank you all for your advice , very much appreciated.I am just drafting a email to the drs, district nurses and pallative team at Princess alice, I need to ease my mind and protect my mum and dad.Its meant to be a comfortable tested time, they have done everything for us all thank you again

Cooy in the adult safeguarding team at social services too. All the best, hope it gets resolved quickly, your poor parents.

Is there a POA?

If not, you have as much right to be involved as your sister, so I'd start getting much more involved, calling and emailing EvERYONE

But focus on words like
Neglect
Safeguarding
Dignity
Risk

Insist on an assessment by Adult Services due to safeguarding concerns and make sure you are present when it happens - if you can get the Social Worker onboard you will have more power to override your sister if it's deemed in mums best interests

This, also say that you do not feel your parents are in a safe environment, mum needs an urgent assessment, she is at high risk of neglect, pain, aspiration pneumonia and if this is not resolved she will need emergency placement in hospital, hospice or a carehome.

Do you know if either of you have power of attorney for them

Hi we have a financial poa but my sister doesn't let me see bank accounts and mums savings, she has also gone against mums wishes of cremation she has insisted mum has a burial, but it's because she's in control of mums money and she says I'm not having her money but my dad has said it's not for burial it's for the family.As dad made 2 funeral plans for them both,and once my sister became sole carer she put her name as my mums next of kin and changed her funeral plan to burial

Next of kin has no legal meaning so ignore that. Do you and your sister have joint poa or just you. You can contact the bank and the office of the public guardian if your sister won't allow you access if you have poa. Does anyone have health and welfare poa. Why is your sister the main carer.

I didn't agree to health poa because of her controlling g and manipulative behaviour, I have been having problems with her for such a long time.I did do the caring with her but we kept coning to blows.I would share my opinion on things like medication for mum or when dad came out of hospital she stopped one of his tablets, she refused to give my mum and dad a tablet they were both given when they came out of hospital, until I had to literally threaten her with drs and social services,to stippling god with them. I can't do the caring with her, my daughter does it now and she said my sister is to much. It's so hard when she won't listen,and she swears and shouts at me infront of my mum and dad, she tells them both in detail about medication changes, or anything.Mum hasn't mental capacity, so when nurses or anyone comes in my sister answers for mum, she has total control.

Does your sister have health poa. Who has financial poa. If she is abusing your parents then you need to report it, you can also report her to the office of the public guardian if she is not doing her poa duties,

No no one has health poa it's me and my sister have financial only

I am going to be getting on it all tomorrow as its cruel on my mum and dad,and it's mentally draining, always having to battle with her with everything.when I do ask anything, all I get is your not here you don't know anything, then I was answering her but I just ignore her now

It's worrying that she is making these decisions if she doesn't even have health poa. Your mum needs an urgent review from the doctor. Nurse and palliative team which you should try and attend. Is mum able to make decisions herself. If not you need to speak with safeguarding at social services. My sister was a bit like this, a bossy boots who bullied my mum. Your sister has to share financial info with you if you have joint financial poa. You should have a notification that its joint.

The Dr came into mum 2 years ago to do her dnr and he said mum doesn't have mental capacity, so this bring, my sister uses it to give mum medication, food, wake her move her leave her in chair all day, she has mums bank details and dad's on her phone has done for about 4 years. It is so controlling and I feel abuse to my mum and dad.i will get onto drs nurses princess alice tomorrow

Your sister needs permission to do these things, not from the doctor but the Courts if mum lacks capacity. Make sure you tell everyone mum has no capacity and there is no poa in place. She should not be using the hoist if she hasn't received training.

You can also contact AgeUK to report elder abuse and neglect

I will do thank you for your advice, itsso hard for me to be heard ,its mentally draining