Refusing a Care Assessment - any advice?

[BlueLegume]

Hi lovely people. I will try and keep this brief. Mother has been referred to Adult Social Care. She is self neglecting - not showering, not dressing, not eating food provided, not taking medication. Adult Social services contacted her earlier this month but she has refused to let them do a care assessment and refused them permission to contact her GP surgery. The ASW was excellent in terms of saying she will do an unannounced visit BUT what then happens if mother refuses access to them. Any experience or advice on this stage of things would be appreciated.

Sorry to hear this - who made the referral for your Mum? How old is she - is it suspected/diagnosed dementia you think behind the self-neglect or something else? Do you have a POA for her? Why is she refusing access and does she acknowledge she needs some form of help or not?

Hard to say what next steps would be, essentially if she has legal capacity to make her own decisions she isn't compelled to accept help from the social worker or anyone else, even to the point where she compromises her own health and safety. Everyone is assumed to have capacity until there's evidence to the contrary. This doesn't mean BTW that legally speaking people refusing state help can compel their family members to provide the support instead, although of course emotionally speaking it's very difficult to see your family member going into a decline and refuse to help them at all - although in practical terms sometimes it takes a crisis to get the person (and sometimes the state) to accept the situation. If you think however she has lost capacity to make her own decisions then it's getting the evidence of this you need - would she see her GP? GPs will usually discreetly take into account an account from a family member of what's going on in the background for the person if you email it to them ahead of any appointment, obviously there still needs to be a separate diagnosis process which she would need to cooperate with. If she already has a diagnosis of dementia social services will usually be able to be a bit pushier (or you have more ability to intervene if you have a POA) - this still usually doesn't mean breaking down the front door and carting someone off to residential care forcibly but they will consider what is in her best interests and if there's evidence she's seriously a risk to herself or others this should be taken into account. In practice again I find what tends to happen is it takes a hospital admission as a result of a fall or UTI or other acute event to get any real movement on a truly recalcitrant care refuser though, unless the person changes their mind and accepts at least some level of help?

Thanks for the detailed response @maxelly Referral I am suspecting was made either by a neighbour or one of my relatives. My sister and I did ask our mother if she would agree to an assessment but she declined and got our brother on board who said she just needed more support from us.
Yes we have POA.
She is mid 80s.
No diagnosis for anything other than ‘depression’ but she was assessed about 18 months ago via a very detailed private referral to a geriatric consultant which my sister organised. She passed all memory tests with flying colours but she has a very difficult personality and always has. Charm personified when everything is rosy but a complete inability to cope with any slight bumps in the road. She has always ‘known better’ than everyone else and had a very superior view of herself fuelled by our Dad who never ever checked her poor behaviour just expected us all to ‘just do as she says’. Dad is now in full time nursing care so she has no sidekick and she has alienated every family member, neighbour and few friends who stuck around for Dad.
Your point regarding compelling family to help really struck a chord. Throughout my lifetime she has always used manipulative behaviour to ‘get things her way’. Very few outsiders have experienced this side of her.
She has refused to see her GP with my sister or I but she has gone with our brother a couple of times. We think this is because she knows we will be honest with the GP whereas our much younger brother is simply after medication to ‘get her better’. We have explained, my sister is a retired healthcare professional, that she needs to engage with other therapies along side the medication but she has point blank refused.
Unfortunately we have been guilty in the past of dancing to her tune for a (short term) easier life but it is now just not something we can do. We are also not young and we also have our own families and health issues to deal with. We also do not live close by.
I take the point about waiting for the crisis to happen but cannot shake the feeling that as a family - wider family as well, our parents ignored some very gentle and sensible suggestions years ago to make the house fit for purpose in old age or to move - we even offered to buy them a place and project manage it for them to be perfect - and then pay us back once they had sold the old house - they declined despite there being no strings attached at all. Nothing property wise we took them to see met their standards and they ended up with Dad in crisis and then admitted to full time nursing care. So many junctions along the way where this could have been avoided.
Everytime we make headway with little things - regular food delivery etc she moves the goal posts.
We sat her down before Christmas and said if we do not make some changes she is going to end up in a care home. All we hear is what she doesn’t want, won’t accept carers but happy running us ragged showering her etc. She has always lacked empathy and been grandiose about being a cut above other, very snobby unable to accept sensible suggestions.
I guess we just wait for the crisis. What a waste of resources when families like ours are willing to help but the old person is defiant and resists sensible ideas.

Ah, sorry to hear, sounds rubbish. Lots of posters going through similar on this board if you take a look at some of the long running threads. All I can really advise is set some reasonable boundaries for yourself of how much care and support you are prepared to provide (whether that's visiting once a week or calling once a day or whatever), communicate to your mother that this is what you are able to do, if she wants or needs more help you are ready to help her get that from social services or privately but if she doesn't want that you won't be able to do it yourself, then stick to it, hard core. Put your phone on do not disturb overnight or if you are unavailable if you need to (you can set it so that calls from your husband or siblings still get through), I know it seems harsh but in a genuine emergency if she can call you she can call an ambulance or whatever. It's helpful but not essential if your siblings can do the same, or at the very least present a united front to your mother that this is what's happening/ not guilt trip you with things like 'oh mum was so upset this morning, she said she'd been trying to call you all night and you weren't picking up'.

I know all this is easier said than done but if you can convince your mum that you really are only able to do so many hours a week and no more, that makes the conversation about outside help a bit easier, because you can approach it as a choice rather than you just refusing, as in 'yes Mum of course I can spend an hour sorting your garden out but that means I won't be able to take you out for coffee as well, which would you rather' or 'of course I don't mind helping you shower but I'll need to leave straight afterwards, if you let a carer help with this we could enjoy spending time together instead, it's up to you though'. Basically work smart within the hours you do have, it's so silly when I hear of elderly relatives of friends or family getting them to do things that could so easily be outsourced like shopping or lifts to places or even cooking, particularly where money is not even an issue - unless you live in the back of beyond taxis, online food shopping and takeaway/food delivery or high quality ready meal deliveries are easily organised, it's such a shame to waste precious family resource on these things.

I do think with these stubborn/manipulative people though it generally does have to get quite a bit worse before it gets better, you have to remember though that this isn't your fault, you've done everything you can with multiple offers of help and support, it was her choice to turn that down so the consequences are hers to live with. I'm not saying abandon her, just that you can easily run yourself into the ground with stress/exhaustion over these things, be strategic and keep yourself well so you can continue to support her the best you can.

Thanks @maxelly yes I am aware of some long running threads on here and have a couple of my own. You are completely correct in all you say and I have all the ‘theories’ and do try to stick to boundaries. It just beggars belief that so much sensible thinking has gone on and they have said no to everything. Even the food we take is now not ‘what she wants’. When we ask what she wants she won’t say. Grrrr

Her capacity will be assessed and if she lacks capacity then decisions will be made for her.

You need to withdraw and not help at all so social services see the true picture.

@BlueLegume I’ve ‘followed’ you over from the other thread - Appalling Behaviour - and as you know, we have already compared our frighteningly similar experiences with narcissistic mothers.

I know your mother passed the mental capacity tests 18 months ago, but cognitive issues can creep up quite insidiously and surprisingly quickly. I know with my mother, her behaviour was always irrational, unpredictable and illogical, so when she started slipping into dementia, the signs were dismissed by myself as her usual nonsense. She was also very good at ‘hosting’ - able to just about hold it together for short periods when she needed to impress outsiders.

Alternatively, she may be so manipulative that she is prepared to refuse to eat, wash, dress and take medication knowing that you are a caring daughter with a duty of care, hoping it will force you into compliance and back into her orbit.

Or it could be a combination of both scenarios. My mother used to refuse to comply with her carers until I had been called and had suitably begged, grovelled and pleaded with her to follow the staff’s instructions. I think, even in her dementia, she still genuine enjoyed having that childlike power over me and knowing I was still being drawn into her dramas.

I can’t offer much practical help, apart from empathy and support, but I wonder (if possible!) she could somehow be reassessed? If she passes again, it’s tough but maybe she will have to be left until there’s a crisis.

You have my absolute and total sympathy. These individuals suck you emotionally dry and because we’re so programmed to be ‘good daughters’ it’s very, very hard to turn your back on anyone who appears to need our help.
xx

She's just pulling your strings.
It's the only control she has anymore.
I know someone like this - always had difficult personality.
Thinks she cut above the rest.
Always knows best.

So keep putting in boundaries
My friend, her daughter gave her a nervous breakdown.

Please don't let that happen to you.

The mum gave her daughter' a nervous breakdown

Thanks @TammyJones again I agree with you - I sense she gets a frisson of excitement when she sees the state we get into trying to cajole her. Greyrock it is again. What an utter waste of public resources simply because you are defiant and stubborn and think you know better than everyone else.

She has also refused a further assessment via a referral privately- point blank said she will not attend.

From bitter experience of having a non-elderly relative with mental health problems, it is nigh on impossible to get the authorities to intervene until there's a crisis, and even then it's hard and quite often not the most helpful intervention. And it sounds like your mum is in a lot better form than my relative was.

I think your best bet is, unfortunately, to drop the rope and let that crisis happen. It's amazing how people can appear to be coping on the surface with even a small amount of propping up.

Are you sure she's definitely not eating? From what you've said your brother seems to have, well, maybe the word isn't "better", but a more enmeshed relationship. Could she be eating food from him but making a drama of not eating with you and your sister to get you back in line?

How did you find out about the referral? Did ASW contact you directly or did your mum and brother tell you?

@HoraceGoesBonkers she received a letter from them saying they had tried to contact her and giving her a number to call. Swore blind she had no missed calls.
Enmeshed is a great word for their relationship.
Also cynical as it sounds I think you have nailed the drama of not eating to do exactly that.
Anyway as so many of you have given me brilliant advice over many moths I shall be revisiting that advice and not rise to the manipulative behaviour. Thank you.

Hmm. I think it's very difficult to figure out what's going on here.

My experience of ASW with my other relative is that they had quite a low bar in terms of making a reasonable attempt to contact someone. Is it possible they've come round when she was out or left a voicemail she doesn't know how to access?

Is there an element of "Look! You haven't been doing enough so social services have become involved, you better step up!" here, from her or your brother? Because if there is I'd be suspicious about this letter appearing shortly after you spoke to her.

@HoraceGoesBonkers yes I agree that it possibly is a ‘wake up call’ to make me do more. I will not do so. It is pointless.

She tells me she does not leave the house BUT she has said this before to me on the phone, along the lines of ‘I’ve not been out or seen a soul since you last came round’ when in fact a neighbour saw me leave on that particular occasion and wanted to check on me as she is a neighbour I know well. She ended up having to not speak to my parents as they were so rude to her years ago. She WhatsApped me about 5 minutes after I had departed, I pulled over to read the message which said ……
’Hi BlueLegume, didn’t want to catch you in front of your mother but saw your car and now you have left thought I would check how things are going. Saw your Mum going out in a taxi just after you had left so if you are still close by feel free to pop back for a chat or give me a call. Me and (her partners name ) are worried about you’.

It’s so murky now it hard to separate the reality from the manipulation. This is why I am cautious when people mention dementia. At times, and my mother is a very intelligent woman who has many manipulative skills up her sleeve, it feels like she has a list of ‘what will make BlueLegume become alarmed?’
The list is:
Stop taking care of myself
Stop wearing make up - she always wore a full face
Stop wearing nice clothes and put old clothes on I used for gardening
Tell Blue I have nothing to wear - then feign shock when Blue drives over - an hour - and within 5 minutes has assembled 10 outfits - with underwear /socks etc.
Tell Blue ‘I’ve no food in’ - Blue or sis drive over with food and she has a fully stocked cupboard of tinned soups etc, most of a loaf of bread and some ready meals in the vast fridge. Plus always about 10 bloody fancy pants yogurt pots - the little glass ones which apparently are the only ones she can ‘stomach’.
The list is endless.

Thanks everyone your comments are very grounding and helpful.

@BlueLegume we have shared experiences on other threads, and apart from subtle differences much of your Cockroach Cafe stories sound like our M's read the same handbook.

I posted an update on my Narcisstic Mother thread yesterday which is probably worth reading. I am not going to pretend this gets easier. I thought I was doing really well after posting that original thread. Turns out I am not. We were in exactly the same position as your between September and the week before Christmas.

A few things to note:

Social services can't legally force someone into an assessment. You will need to wait for the crisis.

Agree with your sister now, how you want to handle any crisis and inform your brother. It is perfectly possible for all three of you to have different approaches. Also expect other people's views to change once you are in crisis (including your own). It is amazing how readily people accept the idea of caring, until it becomes a reality.

Expect pushback when you don't provide "perfect daughter" responses. This comes from family and the agencies and the pressure is excoriating.

Your M is going to be very vulnerable and it will be a side you haven't seen before. I am not sure how anyone balances the hurt of the past, with the compassion needed at this time. I am really struggling with this right now.

Crisis can happen very quickly and come out of the blue. I found the family members that should have been prepping for it, avoided the discussions as much as M had historically.

When it comes, it may be awful. Prepare yourself. Your list of "things that will trigger your concern" is good, but we found it really hard to discern what was just normal stuff vs not being well stuff. M is now in a position where everything is being treated as Dementia, but it probably isn't. For her sake I wish there was more nuance as some of her agitation is more likely MH than Dementia. But for me, it also feels like a whole new set of things to have gaslit back at me. "Well she was never like that before" "This behaviour is definitely Dementia (referring to her hoarding tendencies)." It is painful.

And keep posting. You are all keeping me sane right now. We can do the same for you.

@Lastknownaddress excellent post. Yes I can see the crisis is going to be pivotal. thanks

Hi @BlueLegume Just wondered how things were going?

Ah thanks @JohnPrescottsPyjamas just nipping out for some much needed exercise but I will do an update this weekend.

Morning all and thanks @JohnPrescottsPyjamas for asking how things are. Grim to be honest. The post from @Lastknownaddress was incredibly sobering. It made me realise however proactive I am my mother is holding all the cards and is gradually reeling us in so we do things her way. As it stands and she admitted this to me last week, she would agree to one of us moving in as she doesn’t like being alone. When I clarified it with her and asked if she was prepared to accept that would see one of us having to leave our partners of many decades, our homes, our own lives etc her response was ‘it’s terrible isn’t ;t it Blue but I think it the only thing that will work’. She has form of pushing people to their limits and I am convinced she gets a buzz out of seeing that she has done this. I make that point as our brother is convinced she has dementia or some cognitive decline. We have no diagnosis and having reflected on her lifetime of behaviour this is just the same. Our brother utterly dismisses this point which has not only been made by my sister and I but various extended family members, neighbours, all of whom she has had run ins with and family friends - all of whom stuck around for our Dad’s sake but now he is in residential care they are nowhere to be seen.
I received a call out of the blue a few weeks ago from an old friend of the family who had called to the house and was shocked at what they saw. The call began as a ‘why aren’t you supporting her’ rant. I calmly explained that we have tried absolutely everything and nothing ever meets with Mums approval. If anything she is utterly defiant towards every single bit of help or support. The wrong washing cycle was used; the food supplied is ‘inedible’.
Adult social care have contacted her she has refused to engage. She will not attend a GP appointment she will not do anything to help herself at all. But she is prepared to ruin our lives. Our brother is impossible. He keeps threatening her saying he will ‘use his POA’ but he doesn’t get that whilst she is deemed to have capacity he cannot do so. Previous posts and threads mention that this behaviour and poor choices are likely dementia - then in our case our mother has had this her whole life. She is no different than normal just more defiant and quietly demanding knowing which buttons to press to ‘frighten’ and guilt trip us into driving across - an hour in my case on a good run. Yes it is obvious we need to leave her but the fear of ignoring the obligation and guilt this situation brings is hard to deal with. So in answer to the kind question - things are grim and there is absolutely no light at the end of the tunnel. She has sabotaged our lives and is holding us to ransom continually moving the goal posts until one of us caves, likely me or my sister and up sticks from our husbands to become her full time carers. She has made it clear she will not allow carers in even though our brother has said he is going to have some sorted. He won’t he is full of hot air. I have offered to pay for a PA type carer - she has refused to even consider it. It is very clear her expectations- and that of our brother - is that as two early retired sister we should be available to step in. It is utterly awful. Thanks for reading I needed that vent.

@BlueLegume I’m so sorry, most especially that your brother is being useless in working with you and your sister as a team - which would show your mother that manipulating each of you is useless because you all talk to each other.

Have you thought about your boundaries, simply what you are prepared to do and no more beyond that? I know in all the endless ‘need’ that it can be hard to draw those lines but it gives you back some sense of control.

Are you taking back the little bits of control, such as turning your phone off at night (I have it set so only my DC could reach me during do not disturb/sleep).

@FiniteSagacity thank you - half the problem is that our brother isn’t necessarily ’useless’ he does do things BUT he just criticises absolutely everything we do and listens to half truths from Mum, such as that she has not heard from us. He then has a massive go at both of us and when we or I me specifically point out 1) we speak to our mother regularly - he responds with ‘oh I didn’t know that 2) we send him updates on things we have done for/with Mum just so he knows and doesn’t waste his time repeating them- his response is ‘we are all doing things we just don’t keep telling everyone’. The problem with not sharing factual information is she ends up with 3 loaves for example because she has told each of us she doesn’t have any bread so we turn up with one. She won’t use the freezer so that is not an option.
I have weeks where I really stand firm with boundaries but even so every call with my mother is fraught. She uses such cliched hyperbolic language she would have you believe she has zero food, no clothes to wear, no access to her money. The list is endless. She would love to be able to tell people that one of us had no choice but to move in as it would make her feel special. Sadly, I also discovered that our brother has been badmouthing me in particular to anyone who will listen. It appears he is also relishing in the fact he is the only one doing anything to support her and people are ‘aghast’ at how awful Blue has been - perhaps put my shoes on and walk in them for 60 years.
The phone one is tricky. She has a habit of ringing and hanging up then when you call back she says it is a mistake but of course she then has you and has another list of problems. I will revisit all the advice as I know it is invaluable. Thank you again

Ask yourself if you would accept this behaviour from ANY other person on the planet?

Then why from someone who is your mother ONLY because she gave birth to you.
That biological fact does not give her special rights to manipulate you AND your family for her own purposes.
Consider the damage she is inflicting on YOUR kids and extended family, not only on yourself. Then step away from her... protect them.. the way a Mother should behave.
Other people will always believe what they want to believe.. no matter what you do, say or want. You do not have to answer to them.
Look after yourself.

@Bonbon21 wise words.Thank you. Brother just keeps saying things like ‘but she is your Mum’, or telling people that ‘Blue just doesn’t care like I do’. It is so frustrating-over the years I have been the one who did all the ‘boring stuff’ like admin etc around LPAs etc. Suddenly he is the Messiah all knowing and caring wonderful son who only a few years ago admitted when he spoke to Mum he just put her on speaker and ‘got on with jobs’. He has zero concept of the support my sister and I have given over our whole life whilst he was allowed to swan off and do his own thing yet we were expected to be dutiful daughters. Grrr. thanks for listening/reading and reiterating sensible boundaries.

I’m truly sorry that things haven’t improved whatsoever. Unfortunately, these type of personalities don’t ‘get better’ and have no empathy or concept of the impact they are having on those around them.

@Bonbon21 is absolutely right too. Just because she’s your mother doesn’t mean she gets to treat you like this either. I know it’s not easy, but try and block out comments from relatives and outsiders. They see a very short snapshot and are very judgemental when there’s a whole backstory and bigger picture. I’m sure your brother skirts around the edges because he feels he’s done his bit and therefore absolved of any responsibility.

The fact your mother is happy for you to give up your life to look after her might be an opportunity to call her bluff. Acknowledge that she’s possibly right, but as you are not “a professional or qualified” it would make sense to get a third party involved who can provide far better “quality service” My mother was a inveterate snob and loved to be queen bee. She was also
ferociously and aggressively against any form of outside care, but once she realised it was all about her, she was getting undivided attention and someone was pandering to her every whim, she loved it! Could you possibly sell it to her as “just someone who is popping in to help with housework” rather than a carer, which has negative connotations to older people?

I wish I could offer some more practical advice, but just to let you know I empathise absolutely. I remember so much the damned if you do, damned if you don’t scenarios, the guilt tripping by others and regularly leaving after a visit sobbing with tears of impotent anger and frustration because I’d let her get under my skin.

xxx

It's extremely difficult. As long as the elderly person is deemed to have the capacity to make the decision to refuse help then you cannot force this on them. All you can do is to make it very clear to anyone who criticises you that your dm is refusing help, that this is very upsetting for you; but unless they can suggest a way to break the logjam then they should not ask the impossible of you either. Ask them if they have personal experience of help refusal in an elderly relative - what do they suggest ? At least you can put the ball back in their court if nothing else.

@BlueLegume so sorry to hear this. It feels awfully familiar. For what it is worth the bit I am finding hardest at the moment is not M. She is so frail right now that it is hard to see anything of her former self, but other family members behaviour is nothing but accusatory. It is savage.

Have a hand hold.