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.

I am the carer for my DH with dementia. It is a really tough job and to keep DH at home I have really clear back up options for both respite and if I am not able to look after him for a period. Ion my experience not all of social services were helpful and the ones I met were very overworked and did tend to look for fairly easy solutions.

I am not familiar with the position in NI, but the approach I took was to present a really clear plan of how care would be provided and how we would look for support. Getting named support from agencies and care homes did seem to gain favour with SS.

@WMW we weren't discussing a dementia diagnosis, I was responding to the statement by another poster than social workers fonts do Mental Capacity Assessments and I was saying that, at least in England, we do.

A dementia diagnosis is a medical diagnosis. You can have dementia and still have capacity to make decisions about your care.

I'm in. England and I don't know what the difference are with NI but my mother has what is now very advanced dementia and I've managed to keep her at home with a live in carer. When my father was alive there was a live in carer but he had to have a separate care package as well. He had cancer, not dementia. Ive got the following thoughts:

• Why a downstairs bathroom.and not a stair lift if its about a risk of falls? That's what my parents have. The carer should ensure they use it safely.
• Its difficult to manage two people with only one live in carer. If you/the agency do find someone good to take it on, you are lucky, and the carer will be paid more to take on the extra responsibility. There might be a good compromise where there is one live in carer and a second carer comes it at specified times for personal care and meals. As your parents deteriorate its likely thst their needs will diverge abd they will increasingly need separate input. Care agencies do their own assessments to see if they can meet need. Its important that you are there for that part of it.
• Generally, a live in carer alone comes in at about the same cost as a nursing home, and yes, it is much better for people with dementia to be in familiar surroundings. So in fact it would be cheaper for both of your parents to be there with 1 live in carer and extra calls than 2 nursing home placements. The reason the council don't like it from a financial perspective is that in England the council can take the value of their house into account and take the full cost of their care until the proceeds of the house have gone. But if they are living at home then the council cant take the value of the house into account when charging for care.
• I had power of attorney for both finance and health, plus evidence that staying at home was my mother's wish, plus it was clearly in their best interests. We still had to go through a total of 7 assessments and in fact after the 7th I did complain about that! I was very lucky with the social worker who was from the specialist mental health team for people with dementia who argued the case.
• when my mother started to wander out of the house and got lost we had to get a DoLs to be able to lock the front door.
• Don't underestimate how much work thete is in maintaining the house. In the past cold snap the water froze in the boiler pipe and she and the carer spent 2 days without central heating and hot water.

Don't give up if your health permits you to continue. Be present for everything. The situation with my mother has gone on now for 6 years and we basically have a hospital.at home set up with hospital bed, ceiling hoist, community nurses twice a week, two carers for personal care and the use of morphine patches for pain relief. Shes 96, very frail and with very advanced dementia. But she has individualised care with a very good main carer and my hope for her is that she just drifts away from us peacefully. Good luck.

My father passed away a year ago after a 6 month period of being in and out of hospital and care homes in NI.The social workers we dealt with were quite reasonable in the main but the nursing home he was sent to was atrocious.He fell after tea time one evening and sustained a bleed to the brain and fractured skull.The staff didn't report it to us until 10.00 am the next morning when the manager came on duty.The fees were £2100 per week as it was a specialist dementia unit.On one visit we found him naked except for a dressing gown, the home had lost his clothes.
SW and my family asked for him to be fed as he only weighted 50 kilos.They refused because they said he was a proud person who wanted to feed himself.At the next meeting they said he now weighed 51 kilos so this proved he didn't need to be fed.He was 6 foot tall and looked skeletal.The SW couldn't convince them that he needed fed and didn't seem to have any power.
He eventually aspirated trying to feed himself and died a few days later.The home phoned my sister and asked was he in end of life care because they needed the bed.Not a single word of sympathy was ever expressed by the home, they invoiced within a week of his death for any outstanding amounts.
Long rant I know but I'd be very careful of the quality of homes in NI and that's difficult for you when you live at a distance.

same, nursing home is £2000+ as both are there. Single live-in carer is only 1-200 more if looking after a couple

But a single live in carer wouldn’t be a realistic solution, because it doesn’t really exist. You can have a succession of carers on shifts that arrive at different points, but you’re not going to get one or even two, people that stay 24/7 and are able to perform the tasks you think they can.

NI has some excellent EMI nursing homes and some pretty awful ones. The costs are no indicator of quality and reviews on line tend to be non representative and often done by people who have had issues. Many general nursing units will also have a locked door, the EMI/ dementia units are more in relation to staffing levels and dementia trained staff. Many dementia patients are managed in general nursing units if their behaviours are manageable. Some units have a high tolerance and some will refuse a resident for minimal reason.

The other thing about the live-in carers too is that if they encounter a problem you will be their first port of call, and you will be called frequently. If a parent falls, or absconds, you will be called to come and sort it out. You will end up on the phone several times a day by the end of it.

They will ask to go home every single opportunity they can get, my grandmother did. Every single phone call or visit. It was heartbreaking for everybody. But her care needs were just way too high and above the needs of any live in carer. And she was only one person. After my grandmother died we had her funeral in the church she went to every week in the village where she had lived most of her life. We took her home where she wanted to be.

Exactly, surely 2 carers ant an time each doing 8 or 12 hour shifts is what’s needed. If it’s one carer how can falls be prevented when they are asleep. Who looks after your DM if your DF wanders off and gets lost outside and so on?

I'd want a clear definition of what 'looking after a couple' meant - I suspect it isn't looking after 2 people with dementia.

My DM did a few years with an elderly couple. One of them had dementia. The other one - bit frail but not much else. So yes she did meals, washing, shopping, cleaning etc for 2 people not one, the actual 'care' bit was mainly one person and not two.

Plus she had a totally private suite to herself including bathroom and kitchen. In a gorgeous house in a desirable part of the world. And they could fend for themselves if she had a holiday.

The chances of you finding someone who wants to be a live in carer for two people, who meets your standards, isn't already in work and wants to be in NI is remote.

OK, so how many carers have you currently got lined up who've said they are interested in taking on this job of live in carer to your parents, at that price point?

You can. I have for my mother. And did when my father was alive too.

What Did you do when the live in carer had her free time? Most carers only work 5 days a week. Was the carer on duty during the day and night? What about annual leave?

OP, this is useless fight...for when and for why? You are hardly making it also

A live in carer is there 24 hours a day except for a) a 2 hour break, which is covered usually by agency staff, unless the client is safe to be left for 2 hours a day; clients without dementia can be left, usually, provided everythi g is fone for them first; b) they sleep at night, and they can be woken up up to 2x times a night - more than that then there has to be waking night staff. My mother's main carer works for 6 weeks, then has a 2 week break, and we have a break carer for those 2 weeks. My mother, when she could walk, used to wake up around 5 and move around upstairs, but we agreed she was fine, the carer didn't need to get up she was entitled to move around her own bedroom! Though they did ask me to put up a gate at the top of the stairs to be sure she didn't fall down. There are different patterns depending on the carers. My friends mother has sisters as carers, one does days, the others nights. 2 weeks, 2 weeks off is a common pattern. Its a good deal for care work. You give them a food allowance and they are there all the time so their only cost is their personal phone bill. Otherwise is payment for 14 hours a day and a sleep in fee.

It's a hard fight, but not a useless one. When I was a social worker I was horrified at the standard of care in residential and nursing homes and nothing has changed my mind since. I was responsible for the adult safeguarding investigations in my borough and can tell some horrific stories, but generally the care is very poor, even if they don't meet safeguarding thresholds. I am not going to let my mother be cared for a succession of different members of staff away from everything familiar if I can possibly help it.

So NOT full time care then. Full time = 24 hours care.

Are you in the UK?

Yes, England.

To get 24 hours waking care, then you would need 2 carers. But my mother has 16 hours waking care and someone sleeping there at night.

I guess I need to point out that in residential and nursing care there is likely to be waking night care, but not always. But even if there is waking staff up they obviously cant be in every room all the time. They do the rounds and in the better places have a system where residents can call for staff. This is no different from what mother has, and she has the advantage of 1-1 staffing rather than 1-3 or 1-4, and much less than that at night.

My DM has Dementia, she has one to one care at night and there are 10 other residents with 3 care assistants and a nurse on duty all night.
I didn’t realise some homes don’t have waking night care.

That's a really good ratio. Ot sounds lijw a good place. Is it a family run home?

No it’s run by a company that runs three care/nursing homes. During the day there are 4 care assistants, a nurse, a manager, a cleaner who does the rooms and hangs up the laundry, an activities person and a general assistant plus catering staff. It’s a wonderful nursing home, we have been so fortunate.

Spot on, you’ve really paid attention to the detail! Sorry it was so long.