Please please stop giving this advice

[wheretoyougonow]

I see so many responses on here telling family members to call Social Services to ask for an assessment for their parents as they are struggling with their caring role. You should not do this if they have capacity and don't want Social Services involvement.

One of the first things you should be asked is do they know you are contacting them? Even if they do call your parents ( they may call to offer an assessment) it is extremely likely your parents will refuse.

You really need their agreement first.

If you are struggling as a carer it would be worth contacting Social Services to ask for a Carers Assessment for yourself. This means you can talk about your carers role without consent of the person you are caring for.

If there are safeguarding concerns then of course report them but state that it is Safeguarding to get (hopefully) the correct response.

I'm writing this out of kindness and to hopefully avoid some frustration. Caring is hard so it's important that you are not waiting for support only to be disappointed in the actions (not!) taken.

@wheretoyougonow I completely understand your post and it’s good to hear you send it from a kind perspective. I think there are just some desperate people who having exhausted many avenues are at their wits end. You make an excellent point about needing the persons agreement. What I think happens is family members try all sorts to help the elderly person - elderly person refuses - person in caring role gets frustrated and posts on here. People try and help by suggesting SS. I do not want a carers assessment. I do not want to do anymore than I am for my mother. It might sound harsh but she has broken my spirit completely with her attitude. So at some stage I will need to speak to someone. I do get your post though.

I would disagree with you. Most of the posts I see are situations where the parent is not coping eg multiple calling of ambulances etc and where the "carer" is in no position to provide care and are receiving multiple phone calls per day from their parents. They don't want a carers assessment because they no longer wish to be a carer.
It is usually a safeguarding issue and if it isn't then Adult Social care will be able to determine that.

Surely for those of us who aren't going to take on any caring responsibilities it's appropriate at a certain point? Not that I expect them to do much since as you say older adults aren't looked after by the law in the same way as children.

But I am not going to be looking after my parents so surely I should at least tell someone when they can't cope alone?

I completely disagree with you. Thats all well and good if your parents are being reasonable and taking responsibility for their wellbeing and managing fine but thats not where people are suggesting it.

It's usually suggested when

First, a parent refuses to accept any outside help and is expecting or demanding their children to do it all (when they clearly cannot due to working/their own kids to look after) and the parent is neglecting themselves as a result and its placing them at risk of neglect/harm. Everyone in this scenario is close to break down/ burn out due to stress

Second, there are two parents - one or both of them is unwell, but one of the parents is refusing to pay for carers but equally, is not able to care for their spouse due to their own health issues thus preventing the spouse from receiving the care they need which is a safeguarding issue.

Capacity can be fluctuating and its ASC's job to assess that, not the person reporting it to social services. If its found capacity to make unwise decisions is present then it will go no further.

Please do not discourage people in desperate situations not to seek help. Adult social care can discuss the options with them and it is not wrong for people to ask about it.

Precisely what my situation was. In the end both were admitted to hospital after the situation became dire, in retrospect I should have made a safeguarding referral but that’s easy to say now, 3 years on when both are now dead.

As PP said, capacity can fluctuate. One of the things in determining capacity is whether someone understands the consequences of their decision (they have the right to make bad decisions if they understand the consequences). In the two cases I was involved in the elderly people didn't understand the consequences of refusing care as they were adamant that their spouse/neighbour/friend would be able to provide care but in both cases the spouse was unable to because of their own health issues, the neighbour was about to go away on holiday and the friend worked full time. They did not understand this and what would actually happen.

All excellent points. Good to hear opinions and thoughts.

You should not do this if they have capacity and don't want Social Services involvement

Oof, this is terrible advice! Lay people arent qualified to assess capacity according to the law.

Capacity assessments are carried out by clinicians such as social workers and GPs and there are capacity assessment forms that they fill out to determine whether someone has capacity or not in various different areas of life. It is a detailed form that examines whether someone fully understands the consequences and risks of their decisions and is signed by the clinician.

You cant expect relatives/friends/neighbours to assess whether someone has capacity because they arent trained to assess it!

Capacity, on the other hand, is a functional assessment regarding a particular decision. Capacity is not static, and it can be performed by any clinician familiar with the patient* *

Also, capacity isnt a general nebulous idea, you can have capacity in one area and not have capacity in another.

Yup, if the person you are struggling to care for has capacity (or has not yet been assessed as not having capacity) and they won't engage with social services, there is little they can do.

"Sandra states that she believes her husband is stealing her money, claims the house they live in is under her sole name, and that she wants to move out and live alone".

All wrong and all down to her dementia. She would not have been able to live alone. She still had capacity and so SS put this down to marital differences.

2 months later when she hit crisis and needed to be sectioned they were extremely supportive and steps to keep her safe were quickly put in place.

SS did provide support for her husband (carer's assessment).

My late fil needed help but said he could do it all. He couldn't. He couldn't wash himself, get to the toilet in time, clean his home, all his utilities were in arrears.
My dh managed to get occupational health to come and speak to him and because fil said no to the things they were offering him, even though he really needed that help, they were about to leave! He finally agreed to a carer coming twice a day for three weeks, which worked for a day or two, and then he'd said he would have a shower after they'd gone, he'd eat after they'd gone, and he would do nothing.
If the person you are trying to get the help for says they don't want it, even if they really need it, in our experience, they won't be helped.

What bad advice OP.

If social services are contacted about a person struggling they make a decision about what kind of assessment, if any is done. It really doesn’t matter what the person contacting them asks for. They are not a healthcare professional. It would be wrong to deter anyone with a concern from contacting social services.

@wheretoyougonow that's a really good point regards asking the parents if they want this involvement.

Sadly I see many posts where elderly parents refuse and I've seen it in real life where they refuse. Yet,the family members are becoming unwell and losing their own sanity trying to accomodate the impossible . I say this as someone who has a multitude of problems myself and not one family member who would actually help and support me. Sometimes this is just how it is and choice doesn't come into it anymore.

It's also useful to get these people on the Adult Social Care radar as things inevitably progress.

I think part of the problem here is the very concept of ‘capacity’. I’m just a lay person but here is my understanding:

‘Capacity’ is not the same as ‘having an opinion and wanting things a certain way’.

‘Capacity’ includes the ability to see the consequences of decisions, including when those decisions lead to negative effects.

Examples:

1.’I want to stay in my house, not get any state help and I know my daughter cannot be here 24/7 to pick me up from a fall’ = capacity
2.’There’s nothing wrong with me, everything is fine, I do everything myself [and I do not realise my daughter is doing everything for me’ = not capacity

I also think the ‘seek their permission’ thing to be a real challenge for carers. I’ve not known any elderly person agree to anything that might change the status quo.

@wheretoyougonow what you are saying is not wrong per se BUT when people post on here about these issues, they are usually at the end of their tether and likely to burn out, if they haven't done so already. Which helps no-one. Most of the posts I have read on here make it very clear that their situation is causing a huge amount of stress and anxiety and the replies suggesting that contacting SS would be a good thing to do are the right ones. I'm in Scotland, but our council website states that you can ask for an assessment of needs from Adult Social Care can be requested at any time

It is exactly the case that as others have said that capacity decisions cannot be made by family members - but they can strongly suspect the same which can be causing safeguarding worries

I wonder what your own experience in this is? As a carer? Or a Social Worker or something else? Would help to know what angle you are making this post from?

If you are a carer, then you are lucky that you haven't yet been brought to your knees ( or worse) by trying to care for an increasingly difficult frail elderly relation without any outside help.

It sounds more likely that you are 'on the business end' though and I understand that not everyone who asks for an assessment will be deemed to 'need' extra support, due to priorities with limited budgets, that isn't a decision that the carers themselves can make - that has to be done through SS

I'm afraid I disagree. As other PP have said, fine if elderly parent(s) are taking care of themselves but - especially in the case of dementia - often they are not and the family carer has run out of options.

My own elderly mother couldn't care for herself at all. She had dementia for some time and family members were trying to cope, but by the time my mother no longer recognised them, things were becoming difficult. My mother refused outside carers (she would scream at them and brandish her walking stick), she couldn't go upstairs in the end so she was going to the toilet randomly downstairs around the house, she would leave the electric oven on, she even fell one day and was lying on her own until someone came and found her.

But if we suggested going into a home or having some sort of care, she was alert enough to scream 'no, no' and this was considered capacity to understand.

We contacted social services who very kindly convened a meeting between family members, a social worker, the visiting nurse and a dementia psychologist. We explained we were desperate and at crisis point, and that without something done my mother would be seriously at risk. They finally concluded they had to take over and they did remove my mother, firstly to a hospital setting where they assessed her and then onwards to a nursing home where she received so much better care than we could ever have given. It was such a relief, and in fact my mother calmed down and was much happier too.

Family members can only do so much and, if they do not have the resources or they are at the end of their tether, yes they certainly should be contacting social services. With our own mother I wish we had done it sooner, it was the best thing despite it being against my mother's wishes.

I have had a long talk with my own adult children, who saw all this happening. I have explained I would expect them to do the same if I ever went the same way with dementia. I am happy to go into a home but if dementia changes my personality, they must do what is best from a care and safety point of view, not what I might be rambling on about at the time. Hopefully it won't be as difficult for my own children as it was for us in respect of my mother.

Yeah exactly. I've worked in this area for a long time and I would say the number of people who 1 applies to is tiny.

It's usually always 2.

You are right that capacity is NOT "I dont want care"- thats an opinion, its not "having capacity".

True capacity is "I dont want care, or a Carelink alarm, and I recognise that as a consequence of that decision, one of the potential risks is that I could have a fall, be on the floor for days and end up in hospital with a broken hip or worse but thats an unwise decision I have the right to make".

The process of having a mental health capacity assessment is significant.
I think there is often a huge gap from when family can tell someone is no longer able to care for themselves and needs more support than they can provide, to professionals officially confirming that the person no longer has capacity and the help kicks in.
I know with experience this period can be very, very difficult (traumatic even) for everyone involved.
As we all know, services are stretched so even when a capacity assessment has been agreed upon, it can be some weeks/months until it actually happens, during which time the family struggle on feeling isolated and desperate.

Interesting to read your replies.

To clarify if someone is self neglecting to the point of harm/potential harm then please raise that as a Safeguarding.

If someone's capacity is in doubt by all means speak to the GP or Social Work team. The GP might say they can't share information with you but they should listen to the concerns you have as this is not breaking their confidentiality.

Sadly it often takes a crisis for people to realise they need the help - such as a hospital admission which has been mentioned here. It is very very tough on family but a sad reality.

For those of you that have a social worker involved in a hospital it is okay to speak to them privately to explain you are unable to continue the level of support previously. Ask for you/your previous help not to be included in the assessment. They should then assessed (with the hospital staff) as to what would be needed.

I would like to acknowledge that the above isn't always easy. Sometimes there is a lot of pressure on you to agree to help so they can be discharged.

It took a family member to spend a night in prison before services prioritised a capacity assessment for our family member.
She had accused him of trying to kill her and because she 'had capacity' it had to be taken seriously. nb I realise that this is a better approach than the police (to whom she was well known) saying "ah well, we know she's not of sound mind" - this is how very vulnerable people (for that is what she was/is) slip through the net when they are actually being abused.

I assess capacity in my clinical role op, and honestly you are right more or less. If we receive a referral from someone other than the potential client themselves or possibly their attorney, we might investigate but if the person themselves refuses to engage, won't let us in, doesn't seem in immediate distress, we can't do anything. A person is allowed to make poor or dangerous choices if they understand the consequences. And we are definitely not allowed to carry out capacity assessment on random unwilling people at the say so of family members.
Which is why elderly care often has to reach crisis point before anything can be done.
No harm in making contact with social services though, but very often nothing will happen. Likewise wise I see on here all the time advice to phone up the GP or the hospital ward. Who of course shouldn't be talking to family members without permission of the patient.

Which is why elderly care often has to reach crisis point before anything can be done

But this is the entire point- it's when it hits a crisis and someone is at physical risk that people are coming to ask advice and others are suggesting a social services assessment. Eg someone having multiple falls, landing them in hospital, someone having malnutrition because they cant prepare food due to their mobility, someone leaving the gas on constantly because they cant remember they switched it on.

Noone is suggesting anyone try to force a capacity assessment on someone who is managing fine - why on earth would they?

So if the elderly person cannot cope without assistance, and is beginning to neglect them self, people should just leave them to it?

@HappilyContentTheseDays thank you for sharing your experience.
My advice would not have applied to your situation as your family member had dementia and from what you have written, unable to meet the threshold for capacity around making decisions about her care.

I am pleased to hear you felt supported once services were involved.

I wrote my post to try and help exhausted carers going through the system hoping Social Workers will become an involved. It was aimed at carers who support people who have capacity but not accepting outside support.

Safeguarding of course would be exempt.

If you can no longer give the level of support needed ( for any reason) and the person won't accept outside support and it is needed to keep them safe - this can be raised as a safeguarding as it will place them at risk of harm.

It is a very tough situation and like I said this is said with kindness to hopefully stop people being hopeful that Social Services can intervene when the person being supported has the right to decline.

Sorry OP, but if someone will be unable to provide care at the level their family member requires (or demands) they are perfectly within their rights to raise it as a needs assessment request to social care teams, especially in circumstances where if they withdraw their support it can become a pretty rapid, or even immediate safeguarding concern. Whether the family member engages or not with that assessment process is then the problem of social care, not the one providing the support prior.