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Elderly parents
Original poster

In battle with Social Workers over parents!!

280 replies

Mrstiggywiddle · 24/01/2026 11:23

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.

OP posts:
Daisychain700 · 24/01/2026 14:50

I have some experience and my advice is:
no point opening best interest discussions or Court of Protection applications until their home environment is suitable for them.
You need to cost the work of bathroom adaptations/downstairs living and cost how long you can fund live in care for them both as the council are unlikely to be able to continue funding when the money runs out and the Court won’t force them to do this.
You need to approach live in care agencies and take their advice about how many staff are needed to run this package, including cover for carer breaks as you are not local.

If you can only fund it for a few months is it going to be more distressing for them to go back to nursing home at that point?

Could you or they relocate to be near each other: live in care packages really need a family member to run them, or there is a risk the worker/s can become too stressed and it can break down. Different live in care agencies have different levels of manager support but even with good support good family back up is needed to manage medical issues, household issues, disruption due to carer annual leave/sickness etc.

Original poster
Mrstiggywiddle · 24/01/2026 14:48

BigAnne · 24/01/2026 14:12

@Mrstiggywiddle if your mum falls and breaks a bone she'll need specialist lifting equipment to get off the floor to prevent further damage. The use of equipment is a 2 person job.

from my experience, the specialist lifting equipment is handled by paramedics, whether in nursing home or their own home.

OP posts:
littleyellowflowerspotted · 24/01/2026 14:47

What an awful situation for you OP. Where it’s clear the family dynamic is healthy and you clearly want what’s best for your parents, I think it’s awful the State can take over like this.

I’ve not been in your position but I do oversee the care for my elderly dad so I understand your concerns and desire to buy some time for them, away from a locked-in institution. A few immediate thoughts…

  1. Social workers are probably thinking about long term and the immediate present isn’t their concern. They’ll be thinking that at some point at least one parent will need nursing care so they’re minimising the disruption and doing it now.
  2. You are absolutely right that people do decline much quicker in a care home than in an environment that’s familiar. For some families, they have no other choice when a parent declines but in your case, you’re offering a viable solution clearly in line with what you and your parents want. Like I said, you’re buying some time for them to be comfy, before their cognition deteriorates. You are right to fight for this!
  3. You do however need to look at this with clear eyes. I do think it’d be very difficult for one carer to look after two elderly people and as their health gets worse, this might become quickly unsustainable, especially if your dad has been known to go for a wander to the shops. Ultimately a care agency would do a full assessment and they’d give you a true view on what is safely possible. It might have to be two people (at least during the day and one at night)
  4. I don’t know how the law works on this but as a last resort, you could go to the local media. Obviously you’d then be fighting against the council’s PR machine but a story about how the law works in NI and two elderly people being ‘imprisoned’ (I’m being dramatic here!!) is possibly something the Belfast Telegraph would take up.

This is a very difficult time of life for adult children who are trying to juggle life and health with the needs of sick parents. I hope you’re able to get a speedy resolution!

Original poster
Mrstiggywiddle · 24/01/2026 14:47

WMW · 24/01/2026 13:46

This has been a tough time for you OP, and you clearly care very much for your parents.

But I think you are being naive about their capacity, and the idea of them moving home with one live-in carer.

You also seem to think that drugs will slow their mental decline - but they are way past that point now.

I think you should listen to the social workers, and to the care home. They won't be "locked in " their rooms, but will not be able to wander out of the home. I miagine there have been issues with your DF getting lost, or getting into difficulties, when he went to buy a newspaper. (Reading between the lines here, having had experience of dementia in two relations of mine.)

I would also take with a pinch of salt anything your DPs tell you. People with dementia are not reliable witnesses. Maybe they have been shown how to use the TV, or CD player, they just can't any more...

You are a long way away from them, and imo them returning home would result in multiples problems and scares. As it already did.

don't think being naive, well aware of what could lie ahead and what is likely to lie ahead for each of them. No, of course they're not locked into their room, it's not the weather for organised trips to the secured garden. No DF has never got lost, knows exactly where he is - so far, agree that will likely change, but we aren't there yet and may not be for some weeks or some years, who knows. Yes, they have their timelines screwed up, disorientated to time and place, definitely. Not to place when they're in their own house. Def not reliable witnesses. Yes, they've been shown how to use phones, CD player, yes they've forgotten, yes their glasses are no longer the correct prescription, mum won't wear her hearing aids as they're a faff, but they need repeat demonstrations, until they have it mastered. I'm not sure how you're able to say they're way past that point now, Dad's psych of old age said she would prescribe the drugs if the correct diagnosis was made. Yes, I care, and would like to think mine care about me when it's my turn.

OP posts:
AheadOfTheCrib · 24/01/2026 14:46

Hi OP
This sounds really difficult for you and I can tell you are trying to push for what you feel is best for your parents, but I fear you may be a bit naive about the situation. I am a social worker in NI, and just wanted to share my thoughts. Apologies in advance if this is long.

First the DoLS authorisation - this isn't the sole decision of the social worker. Your parents need to have been assessed as lacking capacity to make decisions about their care needs, and this will have to be evidenced. A medical practitioner will then see your parents, and will need to confirm their agreement re: the outcome of the capacity assessment. Your thoughts and wishes as the nominated person, as well as your parents previous wishes, will also be recorded and all these documents are sent to an independent panel. The panel will review the evidence, wishes, needs and risks, and make a decision on whether the DoLS will be authorized. Because you do not agree with the DoLS, the authorisation is then sent to the attorney general to review and make sure it is necessary, proportionate and legal. So there is a minimum of four steps where all professionals need to agree the DoLS is necessary.

Regarding live in care at home - this is absolutely an option for your parents, so long as you can prove their needs can be met at home and the majority of the funding is privately met (the health service does not have the budget to fund 24/7 care at home unfortunately). I obviously don't know the full information, but it sounds like your parents have been assessed to need a carer each, which is why social services are asking for confirmation that you have a minimum of two carers ready to start. The downstairs bathroom is a necessity, as your mum seems to be a high risk of falls and the consequences of her falling while using the stairs could be deadly. It's not that they are refusing to discuss home care, it sounds like they have discussed it with you and these things are what they have deemed necessary for this to be a viable option.

In my opinion (based only on the information you've given and my knowledge on the subject), I likely would also be recommending nursing home care for your parents.

Hope you get things sorted out and your parents are happy, healthy and content wherever they live.

Flapjak · 24/01/2026 14:44

Having worked in this area, usually people who are deemed as having high enough needs to warrant funding of a live in carer over a nursing home , would still need to consider that that carer is not available 24/7 365 days a year , so either parents can be left alone at times or additional carer for breaks, one or two days a week off and holidays would also need to be factored in. I think you would find it nigh on impossible to find a carer would agree caring for two people with falls risk and dementia on their own or even if you did they would be a high risk of them underestimating the need and resigning after a short period. Usually social workers will do as much as possible to keep people in their homes with a care package as it is cheaper and spaces are limited in nursing homes . For them assessing both parents as requiring nursing home placements this suggests to me they feel both parents are unable to remain safe overnight and in-between care calls. If both parents have a similar level of risk or need , I dont believe it would be safe to have a sole carer working on their own

Original poster
Mrstiggywiddle · 24/01/2026 14:40

rookiemere · 24/01/2026 12:57

OP it sounds like such a tough time for you and I hope you are now fully recovered.

From my experience with my own DPs, social workers are usually very reluctant to put people into a home and will try for carers at home as long as is possible ( or in some cases much longer). I am so sorry as I know how hard it feels to have to be the only one advocating for your DPs, but I would say the decision to put them in a home has not been taken lightly. I would think very carefully about how it would work in reality with carers, and unfortunately with dementia they are likely to need a home at some point, so it’s only a stop gap solution.

It does sound as if they are in an awful environment so I would personally focus my efforts on understanding why they don’t have access to their newspapers of choice and see what can be done with the TV channels whilst simultaneously checking out other homes in the area. It’s hard to tell if your DPs are self funding or not, if they are then you can choose, but if not you’ll need to work with the social worker.

You sound like an amazing DD, don’t burn yourself out in the process.

thank you, yes it's really really rough. I hope I'm fully recovered too!! High risk of recurrence and spread unfortunately, trying a low carb/sugar diet, recommend Jenny Phillips nutritionist.

dementia unit is only option according to SWs as it's lockable. This morning they started getting their paper and were very switched on, although tired, but sparky!

SWs behave as though completely ignorant that Live In care exists, however one yday admitted they had worked with them before so the ignorance is all play acting. They would be happy with a stop gap solution if that's all it can be, at least they can say they tried. 24 hour attempt was not an attempt, it was poorly managed. THey are self-funding, but in NI the SW reigns supreme still. Not same as mainland UK. Unbelievable, I know. I'm still wrapping my head around it.

OP posts:
Jellycatspyjamas · 24/01/2026 14:36

Mrstiggywiddle · 24/01/2026 14:15

yes, you're right, either way there is no funding available for this, any money has gone.

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Are you looking for the local authority to fund care at home? Where I am (Scotland) packages of care are being significantly reduced due to funding restrictions and lack of carers - folk who get budgets approved then can’t actually find anyone prepared to do the work. Nursing/care homes are being proposed because they can provide reliable, consistent care at a reasonable cost to the local authority.

You said there was funding available for live in care for 6-12 months, but finding people to do that won’t be easy. And in 12 months time a place in a home for them together may not be available in the way it is now. They may well be better at home with you, because you know their ways but a live in carer won’t, and will have clear protocols to work with. It’s very hard to see your parents decline but the system just isn’t funded, or flexible enough to provide the optimal care at the exact time it’s needed in the way you’d prefer.

Original poster
Mrstiggywiddle · 24/01/2026 14:35

ChaChaChaChanges · 24/01/2026 12:26

I’m so sorry, because I’m in broadly the same position, but I think SS are right. Care home is the most realistic option now.

i'm very sorry you're in similar position. SS don't know my parents, they look at them on paper, tick box exercises, etc. They have demonstrated their lack of knowledge and lack of experience. The specialists who see them weekly disagree wholeheartedly with SS. I'm sorry if SS have deemed yours to be fit for care home only, it's rough.

OP posts:
Original poster
Mrstiggywiddle · 24/01/2026 14:33

stichguru · 24/01/2026 12:18

It's a long post - The key question I guess are your parents going to be safe and well at home just the two of them for quite long tracks of time between carers? While it sounds like social services have been abysmal in their communication with your parents, the answer to this question sounds very much like it's a no. In fact, I would suggest that at times they may both need a carer or one of them may need 2 carers for certain tasks. Social service is unlikely to pay for a full time carer plus another to visit once or twice a day for washing etc.

Therefore either you parents have the money to pay privately for this, in which case, they with your help, need to crack on and get it set up, or they don't, in which case a nursing home place is the only safe and sensible option. I would say some elderly friends of ours were rather in your parents' situation a while ago and ended up in a care home with two next door rooms - one has become their bedroom with a double bed, wardrobe, drawers etc, the other a sitting room - 2 chairs from their house, a coffee table, desk and cupboard from there house and space to move more chairs in. So a few weeks ago when we visited we were sat in their sitting room, just the 4 of us in private, not on their bed or anything, Just a possibility...

they have the money at least for a period of time, we cannot just crack on, I've been battling this since summer 2025, earlier even, social workers preventing it. We've spent 1,000s on nursing home since the summer when parents realised they wanted to be back home, so the funds are diminishing all the time, so is their cognitive state, the dementia unit is really not helping, but that is the specific choice of the social workers.

OP posts:
CloakedInGucci · 24/01/2026 14:31

I think you are being (understandably) overly optimistic about them being able to go home, with one carer, while builders put in a downstairs bathroom, and the prospect of drugs to slow the dementia. Even if disagree with everything else the SW says, surely you can see that at the very least she’s right that they can’t go home until the downstairs bathroom is done.

I also think you’re being a bit unreasonable to flippantly describe people in the dementia home as “inmates”. I appreciate you were making a point but your parents have not been imprisoned by people who want them to suffer.

Original poster
Mrstiggywiddle · 24/01/2026 14:30

Hiptothisjive · 24/01/2026 12:06

I think this is the really unfortunate intersection between what your parents want vs what is best for them at this time.

Aside from the very long (!) post about tonality and what was said the facts are your parents aren’t able to safely look after themselves.

Even with a carer unless they were live in with all the conditions and dementia not to mention the attempts to take them home and failing you continue to go down a very stressful path of doing what they want vs what is best for them. Fro. Your post I think your parents need to be in a home.

agree on paper it looks much like classic case of needing a nursing home. Reality is I know how damaging a nursing home is. They've been in two, same story, different faces. Cognitively they're much better at home.

OP posts:
BillieWiper · 24/01/2026 14:29

Mrstiggywiddle · 24/01/2026 13:59

Surely if they genuinely don't have the funds for more than six months worth of home care, you can just get it for six months? - yes. Even 1-2 months would be worth it.

If it's private how can SW stop you? - Difference between English & NI law sadly.
Is it that the social workers are basically in control and your parents wishes are no longer legally valid? - yes and yes
Are they trying to encourage/force the sale of the house in order to fund longer term care in a home? - not yet
Or could they move somewhere smaller/more accessible? - would still make them disorientated and it's not home, but understand.

They may not be what they want it now, but almost certainly will need in the future. - agree, we aren't there yet. There's still life in the old dogs yet.

I'm so sorry you're going through all this. It sounds so stressful. X - yes, thank you v much, I'm horrified.

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Thank you. It's the law over there that seems the biggest barrier. It seems most unfair.

I hope things improve for you all x

Original poster
Mrstiggywiddle · 24/01/2026 14:28

Smartiepants79 · 24/01/2026 11:54

Who is paying for this care? Live in carers - would that be 24 hrs a day? My experience of live in care is that it is very hard to find good, consistent people to do it and it’s very expensive.
I can’t really tell if your parents are actually fit and well enough to be at home. Is there not a risk that a few weeks down the line you’re back where you started with them in hospital?

cost of live-in care is exactly same as a nursing home, in some cases a fair bit cheaper.

OP posts:
Morepositivemum · 24/01/2026 14:28

Op the issue sounds more like the care home than them being in one. I’m shocked they don’t have access to newspapers, tv and a garden. Outside of this they sound like they need to be in a care home. If you accept this they honestly might too

Skybunnee · 24/01/2026 14:27

I can’t see them considering sending them home if you haven’t done the downstairs loo and got a carer in place. You probably need to do that then have it assessed to see if it is suitable.

Original poster
Mrstiggywiddle · 24/01/2026 14:27

Cherubneddy · 24/01/2026 12:02

I am shocked at the number of people stating OPs parents should not be allowed to return home on the limited information given! I can’t say what I think should happen until having an awful lot more information regarding what can be put in place to mitigate risk etc. For example, IF OPs dad left the care home ONCE to go and get a paper, that is NOT justification in itself for him to be locked in a home and his rights taking away from him. But as I said, we may not have the full picture here.
And just because 2 people have dementia, it doesn’t necessarily mean they cannot be safely cared for by one live in carer. It depends on their needs. Not all people diagnosed with dementia behave the same/ need the same care.

yes, i'm a bit surprised too. Perhaps these people haven't yet had to advocate for their parents or see that the person inside is still there, not reduced to a liability. Dad likes to go and do jobs, like gardening, like sweeping up leaves so his lovely wife has an easier walk to the car, like buying her shampoo or biscuits, or their paper, providing for her makes him feel good. So he walked 5 mins to the Spar, fairly regularly. Mum less confident, rightly so, she doesn't go with him. Once she did, she fell over her rolator, a passer by helped her up, she carried on to the spar, bought their paper and walked back. Quite an achievement. But not one she wants to repeat. The lack of capacity is true in that they couldn't remember the PIN to get out the front door, but did have capacity to figure out they could go out the smoking exit and through the gate. They don't have capacity to remember their PIN to access online banking, nor the capacity to manage their finances, nor the capacity to read small print, nor the capacity to remember how to work their CD player, but they do have capacity to know where they want to live, know they want me advocating for them and that they want a solicitor on board, know they want to go to church and miss their friends there. The dementia in my dad makes him struggle to find the best words to use, he's hard to understand a lot of the time, at the same time if you're patient you can wade through the excess language and get the gist, but the social workers don't do that. My mum's dementia might be showing when she thinks she's still teaching, but Parkinson's makes you have hallucinations too. She struggles to remember words but that is due to strokes that happened in 2024 according to Psych of Old Age. With social workers it's definitely one size fits all.

OP posts:
littleyellowflowerspotted · 24/01/2026 14:26

zipadeeday · 24/01/2026 11:27

Can you shorten that at all?

I don't understand why you don't just remove them from the home and put live-in carers in place if that's what you want?

I honestly despair of posts like this. Why be on a forum if you can’t be bothered to read what people write?

viques · 24/01/2026 14:22

soupyspoon · 24/01/2026 11:33

Can one carer look after them effectively OP?

I am sorry you are having such a hard time OP, it sounds a nightmare, but your parents do sound very frail, and although it sounds as though they are currently able to understand and talk about their living situation you know that this is only temporary, and that their understanding and ability to express their needs will deteriorate.

This together with their physical needs means that they will need far more support that a live in carer, or two which I think would be the minimum, would be able to offer. And what would happen if the carers were unsuitable, or needed to leave, or could not cope. Your parents are very vulnerable, they don’t need to be put into a more vulnerable situation where continuity of care could be lost at short notice.

I understand that their current care home isn’t what you want for them, but realistically I think if you keep pushing for the care at home solution you are on a hiding to nothing. I really think you would be better to use your energies to get them a place in a better care home where their needs would be met and they would not have to face even more upheaval.

olympicsrock · 24/01/2026 14:21

This sounds awful - but I can see that they need two carers . The burden for 1 is too much. The problem is that they may have missed the boat to return home now given this awful situation.

I think you might be better to focus your emergency to finding a good home that they can live in together , ideally with 2 adjacent rooms. Will they not allow you to sort television and newspapers yourself ?

IsaDrennansoitis · 24/01/2026 14:21

How often do you see them or speak to them @Mrstiggywiddle ?

Only asking as my late mother had Alzheimers and often sounded sensible on the phone when I'd call at 11am she wouldn't be the same person when my sister called at 3pm.

We struggled with mum as time went on. She let herself out of the house in the middle of the night (despite cameras and alarms, and we lived 20 miles away)

Similar to you, social workers made the decision on her behalf that she needed round the clock care and was placed in a (very nice) care home. She lacked capacity and we didn't have POA.

She was settled there and we knew she was safe.

If your parents are classed as lacking capacity then ss will be making decisions based on their best interests.

Are you an only child? It must be very hard being so far away from them and not seeing on a day to day basis, their needs.

I also hope you're out the other side of your treatment and well on the road to recovery.

Do you mind saying what county your parents are in? Because the area and care home would make a difference to their treatment. Mum was in a North Coast home, specialised in Alzheimers and they treated her like a queen.

2026willbebetter · 24/01/2026 14:19

Mrstiggywiddle · 24/01/2026 13:59

Surely if they genuinely don't have the funds for more than six months worth of home care, you can just get it for six months? - yes. Even 1-2 months would be worth it.

If it's private how can SW stop you? - Difference between English & NI law sadly.
Is it that the social workers are basically in control and your parents wishes are no longer legally valid? - yes and yes
Are they trying to encourage/force the sale of the house in order to fund longer term care in a home? - not yet
Or could they move somewhere smaller/more accessible? - would still make them disorientated and it's not home, but understand.

They may not be what they want it now, but almost certainly will need in the future. - agree, we aren't there yet. There's still life in the old dogs yet.

I'm so sorry you're going through all this. It sounds so stressful. X - yes, thank you v much, I'm horrified.

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Because the SW is putting your parents interests first and moving them home again and then into a new home will be too much for them.

Have you asked a live in care service to assess them and if they would need 1 or 2 living carers? And if they can meet your parents needs?

Original poster
Mrstiggywiddle · 24/01/2026 14:18

SisterTeatime · 24/01/2026 11:58

Honestly, I think it’s hard to see how your parents could manage with one live-carer and no downstairs bathroom. By one carer I assume you mean one at a time, not one in total.

The return home clearly was a failure.

I don’t see how one carer would cope with managing eg your dad going out and being confused. Obviously a carer would not be able to physically keep them in the house and would not be able to go out with one and stay in with the other! So two carers seems eminently sensible to me in the circumstances.

it sounds like your energy would be much better spent on getting them either into a better home or drastically improving the care they receive in their current home. I’m not doubting your account but just wonder whether staff have confirmed they don’t help with things or going out in the garden. Is it possible your parents are saying things that aren’t true?

I also think if you’re in London and have had cancer and gruelling treatment you really need your parents to be safe with the best quality of life possible within those safe parameters rather than at home where they may not be safe and may not have any better quality of life.

two days ago while mum was horribly disorientated and scared and while I was on facetime, I made Dad get up and find a nurse to talk to them both and assure them they were in the nursing home. Dad walked around for a good few minutes before someone stopped, he asked, she waved into the screen, said "Yes, I'll do that" then walked off in opposite direction. Second person stopped, took the phone, walked a few feet away from Dad and told me how well he had done in an activity she had led earlier. I had to really push hard to get her to speak to mum and dad but she eventually did, and it helped. Clear reluctance though. It's a dementia unit, presumably theyre not used to inmates requiring BBC News and newspapers.

OP posts:
FiveFoxes · 24/01/2026 14:17

I don't have any advice, but I have a Mum with (probably advanced) Alzheimer's who has been living alone in her house with 3 x care visits and who has now reached the stage where I have arranged live in care to start shortly.

I took advice from the Admiral nurses at Dementia UK https://www.dementiauk.org/information-and-support/how-we-can-support-you/what-is-an-admiral-nurse/. I also spoke to several care agencies who provide live in care.

It is expensive, but only the same as the care home prices. The agency will supply a rotation of carers (one or two) who will live with Mum for a week on/week off or all the time. They work 12 hours a day with a two hour break. If necessary, you can pay for an hourly carer to cover these breaks. They need to have (mostly) undisturbed nights, otherwise you pay even more and they can provide someone to cover the nights. The care agencies and the Admiral nurses said there is no reason why she can't just have live in care right to the end.

We haven't quite started yet, but hopefully it will work as described. I don't know why people think live in care isn't suitable for dementia. It's a bit worrying but no one is really saying why!

Oh and my Mum had a incident last summer when she went for a walk and forgot where she was. It was NOT wandering - she always used to take herself on walks, just this time she didn't recognise her surroundings (but did ask strangers for help). If she's still around when the weather's better, the live in carer can take her for walks and satisfy this need (if it still exists then).

I am lucky that Mum has enough savings to be able to cover the care that's needed. I have PoA. I am going to look at care homes as a just in case.

I don't know about NI, but I hope the above information has been helpful.

Oh and she has donepezil. It made a remarkable difference when she first started it. It might not be doing anything now, but it may well have slowed the decline for a while.

What is an Admiral Nurse and how can they help?

Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.

https://www.dementiauk.org/information-and-support/how-we-can-support-you/what-is-an-admiral-nurse/

Original poster
Mrstiggywiddle · 24/01/2026 14:15

Cherubneddy · 24/01/2026 11:57

Also to add, social workers unfortunately do need to be aware of family being motivated by money and avoiding care fees to retain inheritance. I’m not saying this is the case with you OP, but we sadly do see it on a regular basis: some families are very open about it.

yes, you're right, either way there is no funding available for this, any money has gone.

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