In battle with Social Workers over parents!!

[Mrstiggywiddle]

I think I may have no recourse here but wanted to know if anyone else whose parents live in Northern Ireland have experienced similar.

Mum has Parkinson's, Dad has Type 2 Diabetes, both recently diagnosed with Dementia in November & December 2025, mum definitely in early stages, dad slipping faster. Both in a nursing home since January 2024 and both want to move back home with a live-in carer, I want the same for them.

They both washed up in a nursing home not of their own choice last January. I live in London and had been diagnosed with breast cancer 4 months earlier. At the same time Mum had had a fall and been hospitalised for those 4 months where she started to become disorientated. Dad visited her 3 times a day battling with traffic, hospital car parks and in between managing his own diet and medication. By the end of the 4 months he was frayed, then a hypoglycaemic attack landed him in hospital for a fortnight. End of December mum was discharged to a nursing home, Dad joined her a few days later. The plan was for them to get back on their feet, eat, rest and plan a return home. Then the interim social worker got involved. She was against a return home, mum was too unstable and would fall. She relented, they went home in February, lasted 24 hours, Dad had another hypoglycaemic attack, spent all night awake in A&E, mum was driven back to the nursing home for the night. Next day Dad was at home alone having not slept, woke 3pm and had another hypoglycaemic attack and was taken back to A&E where he spent another sleepless night. A&E did nothing except monitor blood sugars. The social worker held a "Best Interests" meeting 27 February, I was in the middle of chemotherapy so joined by speaker phone. The social worker opened by saying "well it's safe to say the return home was a failure" and ploughed forward getting District Nurse, SW Manager and Home Manager to say the same, and they all agreed that Mum & Dad should stay in the nursing home permanently. They pretended to ask my opinion (I held back as was shocked and no time to think through an answer), Mum and Dad were horrified at being spoken about in such terms and said as much, and the decision was taken out of our hands.

By May, I had finished chemotherapy, had had double mastectomy followed by lymph node clearance, and a new permanent Social Worker had been assigned. After waiting for her to make contact I eventually made contact some time during the summer. I had a good impression of her over the phone, I told her Mum & Dad wanted to move back home with a live-in carer, she said "maybe we do need another Best Interests meeting", so I waited.

In August I had 3 weeks of radiotherapy. At same time my parents were assessed as "lacking capacity" and my Dad was no longer allowed his jaunts to the local garage to buy his paper, but they didn't tell him this. I did but neither believed me. A few weeks later he walked to the garage, he was found and brought back, staff reported he had "absconded" to the Social Worker. They then called an urgent "Best Interests" meeting (no. 2) for 22 October, but didn't tell me it was about moving them to a locked nursing home, instead I believed this was to finally discuss moving back home. The meeting was an ambush, mum and dad were not invited as I discovered at the start of the meeting, reason given was they lacked capacity to understand what was being said. Statements from my parents were read out in which mum was quoted "I know a return home is not realistic and I must not allow my daughter to steer my goals". Dad went along with mum and was quoted "I'll stay here". A few days later I asked mum about this, her jaw dropped, she said "she must have asked a very carefully worded question to get that out of me", and both were clear that this is not what they wanted. At the meeting I was asked with no warning to provide a water tight live-in care solution, put on the spot I couldn't, they decided live-in care was therefore not possible. The meeting concluded with all in agreement except me that a move to an EMI unit/dementia unit was the plan. A matter of weeks later both were diagnosed with early stage dementia.

9 December a further Best Interests meeting (no. 3) was held to get a unanimous decision to move them to an EMI/dementia unit. I had hired a solicitor who attended, 4 social workers, 2 physios, OT, a cast of a thousand, but not my parents. Social worker suggested moving temporarily to an EMI/dementia unit so they were locked up while discussions took place about a return home, also to install a downstairs bathroom. I stated downstairs bathroom was possible, but I was very concerned that another move to a place that was still not home would disorientate and distress them further, but was convinced by the social worker that she wholeheartedly agreed and that it would only be temporary. Christmas Eve mum and dad were moved. They have both declined since. No TV in their room, no access to newspapers, no help to find the channel they want to listen to news, no help to set up their CD player, no help to re-orientate my parents when disorientated, no access to the outside garden (which is secured), no help with hearing aids or glasses which are vital to maintain mental acuity. They are being allowed to slip.

23 January (yesterday) another meeting, originally I was told to invite the Live-In care providers. Found out 2 days before the meeting they were no longer invited and it was to discuss finance and care plans. Quick smart we forwarded care plans and costings. Opening questions were have you installed a downstairs bathroom, how much money do your parents have and what can they afford, and social workers insisted they would only allow them home with 2 live-in carers doubling the cost, also they should have enough for a year minimum, if only enough for 6 months the social worker said she would block a return home. The social workers hadn't even bothered to read the quotes sent to them. No quotes yet for downstairs bathroom as I was under impression it was not a condition for returning home, no access to parents bank accounts yet (slow solicitors), and I do not believe 2 carers are necessary, some of the other specialists back me in this, especially the one who sees my mum for weekly physio sessions.

The crux of the matter is that unlike mainland UK, Northern Ireland gives no authority to next of kin because the NI parliament did not sit since 2016 and their care provisions have not kept pace with mainland UK. In lieu of next of kin authority, care providers have instead Deprivation of Liberty Safeguards (DoLS), and they wield this. Social workers seem to have ultimate legal authority and threaten legal action if they do not get agreement from family. Additionally, these social workers have dragged their feet since taking over in May 2025. We are now facing more meetings to discuss returning home, meetings about meetings, etc. The lead social worker obviously doesn't know her facts but will talk around the houses to disguise the fact. She shouts down anyone who disagrees with her. All the social workers are defensive and are so unhelpful in discussions with me. I can see a time coming when my parents will not even remember they have a home to go to, let alone know they want to live in it.

My solicitor admits I just have to jump through the hoops they make for me, meantime he is getting written confirmation of my status as "Nominated Person". He is disgusted at the treatment given to both my parents and to me. The physio who said downstairs bathroom useful but not a condition and that parents need only one carer "and at that, minimally" suggested official complaints to 1) Director of Trust, 2) Commissioner for Older People, 3) RQIA, 4) MP. Said to say Trust is responsible for their decline, that instead of reducing their liability they have increased it by neglecting parents' cognitive well-being, and that the longer they remain in a locked dementia unit the more adverse the effect on their health. My solicitors advises against complaints procedure for now.

Has anyone experienced anything similar, can anyone suggest any possible way out of the deadlock? The social workers would like to lock them up and throw away the key. My parents are retired teachers, they have given to others all their working lives, paid their taxes, they are grandparents and have life to live. I cannot believe that this can happen in a 1st world country, I'm contemplating adding to my Will that social services never by default get their hands on me. This is a great advert for assisted dying.

Thank you for reading this.

Thank you for this, I’ve just googled, think section 21a challenge applies only to English law not Northern Ireland.

Yes, logistics prevented bathroom quotes. 2 carers because of risk of absconding but I don’t believe that risk exists - at least at moment. Home is home. Sorry for being brief, astounded at the volume of responses in this thread.

OP, I think the interest comes because a lot of people have been or will be in the situation of finding care for parents or worried about our care in the future.
My aunt who had PD was at the planning stage of having a downstairs bathroom put in when she suddenly spiralled downwards and had to go into a home. I can understand SS wanting only to talk about your parents going home when the bathroom installed as the situation might be completely different by the time the bathroom is installed.

Residential and Nursing homes always have waking care but the ratio for staff to residents is lower overnight.
Too low but it's much the same in the NHS.
We all hang by a thread. Seemingly.

I really feel for you @Mrstiggywiddle, it's a grim situation to be in when people you care about are a long way away and you just can't get to them. And the first post needed to be a long one because it's a complex situation. I honestly think (hope) some of the less kind replies on this are from folk who haven't had to deal with the care of elderly parents. It can be bloody hard.

Realistically how practical is it going to be for them to go home. They have dementia, this is only going to get worse. You also live a long distance away, so can’t be always on hand to provide support.

Yes but you'll need 2 live in carers to cover 24/7 plus cover for holiday, illness etc. Plus the costs of running a house. Who is going to manage the house, sort out the boiler and all the maintenande etc?

This feels like an extremely complex patchwork, with several pieces pushing against other pieces. I really feel for you all.

I won’t chew over everything you’ve said, but I’m afraid two huge obstacles stand out; that it is not possible for you to be on the spot dealing with issues as they arise (leaving aside your health issues), and frankly, that your parents don’t have the kind of money that means they can take the reins financially. That maybe shouldn’t matter but it kind of does in reality.

Im certain that you’re right that your parents do better at home from a cognitive point of view - pretty much everyone does. But physically there are huge issues that work against that as a solution. Your mother has significant mobility problems and your father is an insulin dependent diabetic with crucial time/storage-sensitive medication needs. Combine those physical needs with progressive cognitive frailty and it’s a recipe for disaster - which is indeed what happened. Then their home is not currently set up, at least for your mother, and it could be months before that’s done.

My experience of live in care for dp’s mum was pretty awful tbh. It lasted 3 weeks before total breakdown. You yourself need a solution that is calm, not constant crisis, because you can’t be on the spot.

I think given all that I would concentrate on finding a much better care setting for your parents. I agree with you that secure EMI sounds very over the top for them. I personally might not move them to where you are because of the cultural changes involved - the wrong newspapers, wrong accents etc. But the right care setting with a positive attitude to people actually living rather than existing could be a better outcome.

It’s not the perfect solution because there isn’t one. And I hope tbh that your solicitor works out better than he sounds - he sounds wet and slow tbh. But it’s probably what I would do in these specific circumstances.

Your love for your parents and their love for each other shines through in your posts, but gently I would point out this is not helping you see the situation clearly and practically. Your subsequent posts mention things that those of us further down the road recognise as not just old age but clear signs of dementia (the cd player, the hearing aids etc)

Two parents with dementia at slightly different stages is a whole other ball game and whilst not unique it’s not as common (thankfully) as a single parent.

Due to the way dementia progresses with better moments than others it is really easy to miss the inevitable decline which marches on. Especially as the “better” parent will start to forget the “worse” moments of the one with more advanced dementia. I was in a slightly different situation in that we didn’t realise my dad had dementia as well so we were taking his assurances everything was fine.

But things were absolutely not fine - what was happening was that his short term memory didn’t remember the periods where my mum was delusional, trying to escape, violent etc. And then when she’d calmed down for a bit he genuinely believed everything was fine.

I was not in a position to visit them for a number of months for medical reasons (so not totally dissimilar to you) and they fell into crisis at an astonishing rate. I saw them for a few hours and then within weeks dad was ringing me multiple times a day saying he couldn’t cope. But then a few hours later when we spoke everything was fine according to him. Because he’d forgotten what had happened a few hours earlier.

In the most horrific three weeks of my life they had multiple engagements with social services and medical professionals but each coincided with mum being relatively calm and so they would sit there as this sweet loving contented couple (because the long term memory of that still remained), say everything was fine and the professionals would say they didn’t need support.

Only after the police were called one night when mum had tried to attack dad to get out of the house did anyone believe me that there was a real problem.

I do crisis management and incident response for a living and that month building up to getting mum in a home and full care package for dad nearly broke me. And I was basically running it as an incident in professional mode, which was what it needed to get everything set up and my parents safe. I also had the immense privilege of being able to take time off work and of my parents having enough money that I know we can fund years of care.

If I had been able to get my parents in a home six months earlier then yes it would have been distressing for them but not as distressing as it has been with mum massively disturbed by the change (although thankfully now settled) and dad still forgetting sometimes that she’s gone and won’t be getting better and coming home.

This will be the hardest thing you have to do, but please believe me helping them to settle in a home now will be 100 times easier than trying to do it once it’s “too late”.

That’s a very good post from @PermanentTemporary.

I am almost at the crossroads point with my DPs and was considering live in care - they could afford about 8 years of it which would be more than enough- but this thread has made me consider that perhaps it’s not the panacea I imagined, and certainly so far managing and getting cleaners, gardeners, home hairdressers and dentist for DPs has always been a lot of hassle. Also I live an hour away so close enough for DH and I to keep a close eye on proceedings and step in when things go wrong.

@Mrstiggywiddle I think this thread has garnered a lot of interest as it’s so unusual. I have genuinely never heard of social workers forcing able people into care homes and all my experience and friends experience has been the direct opposite- DPs left at home to preserve their “independence “with 4 indifferent carers a day when they are unable to wipe their bottom or know if they have had lunch that day.

You sound like such a lovely caring person and it does sound as if the unit your DPs is in is not suitable for them, but getting them home sounds like you’re trying to solve yesterday’s problem. It might be possible for a while if they had unlimited funding but if they can’t cover what social services states is needed - 2 carers and a downstairs bathroom- for more than 6months to a year, then all you’re doing is temporarily stalling the problem, and not even that as the at home care will need close management from you. Their dementia will get worse, at the minute because their basic needs are being sorted they will sound more coherent, DF was utterly plausible in hospital ( brought in with delirium) about how he could continue to live at home, but honestly I don’t know if he has washed any of his clothes in the past 6 months and doesn’t recognise sell by dates - cleaner and carers are meant to check these, but guess who it ultimately falls to <sigh>.

At the minute I am posting this to put off calling my DPs. Every call presents another problem to add to my list. I am no longer their DD, just an admin assistant to support the carers. They have capacity enough to air their complaints and demand, but none to recognise any burden on me or DH. I would give just about anything to have them happily settled in a nice care home.

At the minute you have turned this into a battle. Everything social services said is wrong. All care homes are bad. You are spending money on a solicitor which automatically makes it adversarial.

Honestly I think you’re wrong and I think it’s too late to get them back to their house. I would either look at getting them into a better care home and/or moving them to a care home nearer you so you can be there often physically as that’s what will do them the most good. They have dementia and I know you wish they don’t, but drugs won’t cure it at best they can slow down the decline. I’m worried that this is consuming you and even if you got the outcome you wanted, it wouldn’t work.

Sorry i have failed to say that this 1 carer 24/7 or 22/7 more accurately is only 1 of a number, at least 4, who would be on rotation with another popping in to cover breaks. There are other ways to cover breaks but for us we couldn’t use those ways reliably every day so counting on needing the 2-hour daily cover. Should have put that in original post because lots of responses point out what you’ve pointed out. Post was already long enough!

I have a disabled child with a care package. Are you prepared to interview and liaise with all these rotating carers indefinitely? It’s worth noting that some will be with your parents for weeks, some only for days, some will be strangers on sick cover, replacing them will be an ongoing thing. None will be with them for more than a year. It will take up enormous amounts of your time.

This is an accurate statement of what 24h care is like. The carer does need a daily break, to sleep at night, to have their own room and bathroom and you have to pay for their food too. Then you need another one to cover their holidays. It all tots up and usually is more expensive than a care home. Once you get into double up or waking night care you’d need to be very rich to afford it.

In my experience live in care is better for people who are physically frail not those with dementia unless the carer was known and accepted before the person got dementia. We get a lot of calls from live in carers where the person doesn’t recognise them and is trying to throw them out of the house or conflicts about use of heating or the shower. Once had a call from a carer who’d had to lock herself in the bathroom whilst the person she was trying to care for battered the door and had got a knife from the kitchen.

Usually social workers are very keen to get people home even where this seems a very unwise idea. They are very big on the ‘least restrictive (aka cheaper) option’ and ‘respecting the persons wishes and feelings’ The fact that they and a number of other professionals think this is a bad idea leads me to believe it probably is a bad idea.

Under the mental capacity act DOLs safeguards (which I think are the same in NI as other parts of the U.K.) OP would be the RPR ‘responsible person’s representative’ and as such is entitled to challenge a deprivation of liberty in the Court of Protection on behalf of her parents. I am sure the solicitor has told you that

We get a lot of calls from live in carers where the person doesn’t recognise them and is trying to throw them out of the house or conflicts about use of heating or the shower. Once had a call from a carer who’d had to lock herself in the bathroom whilst the person she was trying to care for battered the door and had got a knife from the kitchen

This is exactly what happened to me as a live in carer. Her family would come rund and she was amazing as she could remember all the social cues of having people over for tea and would have a lovely time reminiscing over old photos.

Then they would leave and she'd be threatening to call the police (turned out she couldn't remember the number) as I'd done something outrageous like suggesting her matted hair needed washing. Or trying to hit me with her walking stick as I'd said it wasn't safe to go out in the ice.

I'd report back to my boss and the family didn't believe a word as lady was so charming when they visited. Although looking back, they also didn't sack me despite clearly thinking I was useless.

Next carer came, reported all the same things, spread the word through the other live in carers locally and suddenly they couldn't hire anyone to do the job.

You mention in your posts that your parents are already struggling with many things that require memory (PIN numbers, working CD player etc) and that you know they don’t have capacity in those areas.

You also say they have capacity to know that they want to be at home.

Candidly this is quite possibly the dementia progressing - short term memory/things that are not used / done as regularly or require executive function go before longer term memories (which is what home is to them).

You could say my mum also has capacity to want to go home. But she is further down the road and to her home is a 1950s house when she is a child and her mam and dad look after her. Until she forgot who we all were she also wanted to go back home where my dad was but it was dangerous for both of them. It wasn’t capacity as she didn’t understand that, she just still had the memory that home was where she belonged.

If you read enough threads on here and the dementia board you will see the phrase “needs not wants” come up regularly. Even if your parents are not quite there they sound like they are very close to it and once they get there moving them back into residential care will almost certainly be distressing and traumatic.

The one thing I have taken from my horrific experience that I mention in my earlier post is that I will be moving my dad into care before being at home is at risk of becoming imminently impossible. Candidly I would be moving him around the stage your mum is at.

Also and I totally understand that you have very negative feelings towards the home, the social workers and the overall system but do try to reframe some of your perspective of it as you run the risk of even more heartbreak down the line if you don’t start to adjust your perception of what people with advanced dementia are like.

You mention how the home is probably not used to “the inmates wanting BBC and CDs”. It is almost inevitable that one day your parent will be an “inmate”. And for a long time many dementia patients get pleasure from TV, music etc even when many other cognitive functions have declined. My dad cannot remember who he just spoke to in the phone or if he’s eaten today or been given his meds but he sure has hell can still do the Times Crossword better than I can!

You also mentioned the positive impact being at home with their own niknaks, pictures etc had on your parents. Have you asked the home if they can have those in their room? All the rooms where my mum is (a secure wing under DOLS) have soft furnishings, TVs, ornaments etc from the resident’s home. It may help them settle.

Long after my grandfather could no longer work the TV that I put in his room in his care home, or read the magazines I had delivered, he enjoyed sitting in the TV lounge where the big TV would always be on. The care home staff would make sure he got up, and got dressed, and went downstairs, and was with people. None of that was happening when he was at home on his own.

And I never announced my visits, I just turned up, so I know nothing was being "set up" for me. And he was fully funded by the govt, due to having been under Section 3. But it was a lovely care home.

Similar with my dad. I would arrive unannounced and find him sitting in the lounge with other residents, having been showered, shaved, and neatly dressed, and given breakfast. I also remember being there when a staff member was in with an Alexa and got people to request their favourite songs to play which we sang along to. Simple but effective.

I don’t think the OP really needs more anecdotes but my MiL had dementia and went from daily care to live in care to a care home over a number of years. And the worst point was when the live in care was failing. No fault of the carers but it’s a hard job and when in effectively becomes 24 hours a day, an impossible one. They were on their knees from tiredness by the end. We had a rotating schedule of carers doing 2 or 3 weeks at a time. They had 2 hours respite each day covered by visiting carers but that wasn’t enough when MiL was unreliable overnight. It was also expensive and increasingly hard to find carers as they chose not to return so we were constantly interviewing and training new people. It’s soul destroying to do that for one 2 week booking and then have them decide it’s not for them.

so my advice would be to work on finding the right care home. Mil had always been adamant that she would never go into one and my SiL felt it was a betrayal to do so. But once she’d settled in she was, I believe, happy. She was certainly well looked after. My only regret is that we didn’t move her sooner.

good luck to the OP and all dealing with this now. It’s not easy.

Seek a second independent opinion on capacity for both of your parents. Try and find a decent private geriatrician, maybe even one from Republic.
Make formal complaints.
Write to social workers advising that your parents longstanding will and preference was to live a quality life in their own home (with risks) rather than a lengthy life in the abyss of nursing home care.

Hi OP, what a sad situation for you all to be in. I only have experience in England so, as you say, it's not all relatable.

I've read as many of your replies as I could, but forgive me if I cover things you've already responded to.

My first thought is that your parents probably could have managed at home with live-in originally but, with the passage of time and the independence they've had taken away from them, I wonder whether or not this is realistic now.

And the issue of the bathroom, when is the last time either of them used stairs independently and safely? Perhaps something the OT or PT could help you to assess in terms of current function. And the last time they had a shower or bath? Many people living at home live downstairs only, they strip wash either in the bedroom or at the kitchen sink and use a commode, which a carer empties. Therefore a d/s bathroom is unlikely to be essential for their return home... Assuming they can use a commode and have LIC.

A true BI assessment should take into account all relevant views and, assuming they're following the MCA 2005, your parents should have the information made available to them in any way possible. So, in theory, it's not unreasonable to ask for them to have a 48hr assessment with a LIC to inform their decision making. Remember, it is decision specific. It doesn't need to be "where do I live long term?" it could be "is it safe for me to live at home with a LIC?". Also, when your parents talk about going back home, can they describe where "home" is? What do they think the risks are? Home is often a feeling. Do you have photos of their current home and previous homes?

Another observation is they were assessed as lacking capacity before they had diagnosed, so how was part 1 of the assessment met?

The issue with multiple moves, including this potential trial, is it is hugely disorientating for people with dementia. I figure you know this well by now. How have each of your parents settled each time they've moved?

I do wonder why your dad couldn't be supported to go to the garage to collect his paper. Or even have a "shop" set up at the front desk or nurses' station.

Sorry, I have so much to say but can't remember all the points I wanted to make. Hopefully there is something useful in all of this to help you. Good luck, and well done caring for your parents so much.

Oh, and for you, get an LPOA set up now for both health and finance. That way Adult Social Care have farrrr less of a say.

I think even if you get the bathroom and the carers in place, If you only have funding for 6 months that means moving them again albeit it home and then moving them again in 6 months. Older people don’t do well with moves (I am a nurse), they can literally cause their death.

I really feel for you. We had similar in that we had to suddenly move a relative with Alzheimer’s to a care home for their own safety. We saw the deterioration & constant agitation & fortunately were able to pull her out. She now lives next door to us with live in care. She isn’t in her original home but we tried to make it as similar as possible and it has made a huge improvement in her quality of life.
She’s pretty advanced Alzheimer’s already & realistically we know she’ll likely need to go back to a home at some point but while she’s able, she deserves to be treated like a person not just a patient.
I wish I had some advice for you but we’re mainland UK. I just wanted to weigh in and say your plan isn’t necessarily unrealistic

But you still havent got the bathroom or carers sorted and they will be getting worse on a weekly basis. Then the funding will only last a few months and you're back to square one with them in a NH so why not just leave them where they are and at least they are safe?

Yes home is home but probably not for too much longer. You are not understanding how frail and confused your parents likely are and what happens in an emergency especially with you living so far away? Patients can really perk up around family but once they're gone they get even more agitated. Why do you think home care is likely to be any better standard than NH?

OP you've had quite a few professionals telling you that you're underestimating this situation.

You are correct, but there are routes to appeal:

Here are the key details for DoLS in Northern Ireland:

• Authorisation Process: Rather than a court, DoLS applications in NI are authorized by Trust Panels (within Health and Social Care Trusts), which are responsible for checking if a person’s liberty is being restricted in their best interests in hospitals or care homes.
• Legal Framework: The Mental Capacity Act (NI) 2016 applies specifically to Northern Ireland, covering both mental health and mental capacity.
• Challenges/Appeals: If a person or their representative wishes to challenge a DoL authorization in Northern Ireland, they can raise it to a Review Tribunal.
• Exceptions: While the specialized Court of Protection does not exist there, complex, high-level legal questions about capacity or deprivation of liberty can still be referred to the High Court.

Can’t massively understand the bathroom obsession either. A commode and someone to empty it/ assist with a strip wash has always been considered sufficient in cases I have come across. Generally paying lots of money for major renovations for very elderly frail people in their twilight years does not go well and they very often get little or no use out of it.