Private care homes and local authority

[CanadaCalls]

Hi, after some advice please…….

My mum has been in a care home since March this year after having two strokes in January. She has just completed 9 weeks in rehab but unfortunately hasn’t progressed much. She was due to return to her care home but whilst she was in rehab they have rented her room out to a new resident even though they were still being paid in full by her local authority.

As a ‘good will gesture’ they have given her another room…….on the dementia unit for residents with advanced dementia. She is so unsettled there as she doesn’t have dementia and finds it very upsetting hearing the other residents when they are distressed and crying out. It has all been a bit underhand with the care home as one way or another they had heard she would eventually be moving on elsewhere. The social worker is going to pursue the situation properly once mum has a new placement.

We had planned to move her care home anyway as it isn’t the greatest care home, but now it’s become more of an urgent move than it was before.

I’ve luckily secured a high personal budget with her local authority which is enough to cover the higher rates of private care homes. She has been refused so far by two of them and not due to funding or that her needs are too high - they haven’t even given a real reason other then ‘it’s s no from us’ like it’s the X factor or something! Those were the actual words from one of the clinical leads at one of our choices.

A manager of another home that I visited today said that even though the funding is covered in full, private homes will still choose a self funder over an LA contract as they are able to apply the yearly price increase to self funders but can’t necessarily do this with LA contracts. The manager said we may struggle to get her in any private care home due to this fact.

Does anybody have any knowledge on this and can offer any advice please?

Thanks

@CanadaCalls sympathy. In terms of the ‘it’s a no from us’ response it’s incredibly difficult isn’t it. We had this last year when trying to place our Dad. I had a spreadsheet of all the local homes and what an eye opener it was calling them . I learnt so much. EMI and EMD registered were few and far between but what he needed. Several simply told me they could staff the place so even though a room was available it was a no. The reality was we didn’t really have choice just where said yes. Luckily location was good and it’s been brilliant. The homes charge the LA a lower rate than a self funder as you probably know but I’m not sure on the ethics of them not providing care ahead of waiting for a self funder. Age UK are helpful. To be honest I spoke to anyone who could help both clinical staff, social services and I found lots of staff at the places I was calling were knowledgeable about other homes in the area and the bureaucracy. Not sure I’ve helped but I’d definitely recommend speaking to anyone you can contact. Social services were really helpful.

Couldn’t staff not could ^

@BlueLegume Thank you. It really is a minefield and one I’ve been tackling non stop for the last 10 months. I pretty much love and breath care home rules, care plans, entitle my etc - it’s exhausting.

I’ve fought tooth and nail to get her the care plan and budget she needs, now only to be told that we can’t spend her budget in a care home. They wouldn’t even need to lower their rates for the local authority as her budget is in line with their self funder fee, it’s literally the yearly price increases that are blocking us securing a position. Her care and support plan says ‘maximal care package’ do I believe this is what has enabled me to get her the budget she has.

All other care homes are unable to meet her needs do they’re not even an option. She has physical disabilities as well as a mental illness so she probably isn’t the most attractive of refiners when they could get somebody in who needs minimal care and it not put extra pressure on their staffing levels.

Our social work has been amazing and is literally one in a million but unfortunately she has no say in who the private homes do and don’t take as they don’t have to answer to anybody.

So frustrating 😔

@BlueLegume

Sorry, so many typos 😆

@CanadaCalls oh goodness me what a lot of work. Just a thought - you mentioned she is in a care home. From our experience Dad was discharged from hospital to a reablement unit - this happened twice. It was very clear he had a new baseline and no amount of physio was going to help. I built up a great relationship with the clinical lead who knew loads of staff in various homes locally. This bought me some time to find one. What she made very clear was that we needed to find a nursing home not a care home. Her logic was Dad was going to deteriorate so we would eventually need the nursing element. Would that help you?

There are no LA homes; they are all private now, and residents either self-fund or are LA-funded. The latter require a financial assessment and the resident pays a bit and the LA pays the rest (up to a ceiling that the LA dictates) - beyond that they seek top-up from relatives.

Homes have to enter into a contract with the LA for LA-funded residents, and the LA pays the fee, then recoups that from the resident.

Self-funders generally pay more and subsidise the LA funded residents. Homes are not wild about having LA residents because of the lower fee. My late OH went from self-funded to LA funded in the course of his nursing home stay - the home were not happy.

Mind you, to say he was LA funded was a bit of a joke really! They funded up to their ceiling and according to his financial assessment and he (well I actually) paid the rest which was about 6 times what they were paying, as I chose for him to be in a good home which cost more than LA pay. I had to put my home on the market.

@Mischance excellent point re homes being private but funded by LA. Our situation was we thought we’d be self funding which was fine but by some digging and amazing input from staff and social services we were awarded continuing health care CHC. This helped as it removed our mother’s anxiety about the financial aspect- which had partly been a barrier to her agreeing to even consider the recommendations and her thinking she could manage him at home. Hope the OP is able to navigate this difficult time. It’s a minefield.

Our social work has been amazing and is literally one in a million but unfortunately she has no say in who the private homes do and don’t take as they don’t have to answer to anybody.

Good to read that SW is one in a million. They are precious.
Ultimately, there may be little choice and DM may not be able to move. Brace yourself for that outcome.
The Dementia wing will be easier for current care home as they probably have a (marginally) higher staff provision in that wing, so it might be for hoisting etc
You just have to do the hard miles and ask every private care home within a radius you are willing to travel. Do your best to get onto this urgently. After Xmas, any spare capacity will fill up very quickly as it's the busiest time.
Maybe ask your SW what their response would be if you looked in a neighbouring Council area? Look at your list of priorities, again. Would you travel quite a bit further if you knew she was happy? Would shared facilities be something to consider if she always needs at least two staff members to hoist? Revisit these to be as flexible as you can.
Good luck, OP. My DM's first care home was force closed by the local Council and over 30 residents had 21 days to find new places. I understand the predicament. Yesterday's budget will not have helped any private care home.

It's horrible. I faced this with my 92 year old aunt. She admitted herself to a home for respite care last December and then physically deteriorated so could not return to her house. She was admitted self-funding on respite care rates- which were really high and usually short-term placements. She just thought she could stay. She asked to move homes after 6 weeks but that was complicated. And:
a) The care home she was in didn't really like her- she is very demanding and complains constantly and dishonestly.
b) She would not follow rules.
c) The social worker would not help with a place in another home because she said my aunt did not need to be in a care home. She needed an extra-care facility where she had some independence but care was available.
d) After 6 weeks my aunt did not want to stay at all but could not return home.

It turned out the respite rates were higher than the self-funding long -term rates and they gave respite residents the grottiest rooms. Hers was clean but shabby and dingey. Some of the staff were very nice but several were awful. She had money and chocolates/treats stolen from her purse in her room at least 3 times ranging from £15 to £35. It was not the other residents- who all had alzheimers/dementia or were unable to walk. I overheard staff being very rude to residents, including my aunt, when they did not know I was there. When I complained the manager was very defensive. She was not showered for days on end and was put in stained clothing. Again, the manager was defensive about this.

Eventually, we got her a place in an extra care facility which costs less than half what the care home cost and is lovely. It was an absolute battle - but the social worker supported me in this and it went through. I'd say get the social worker on your side.

She spent over £almost £40,000 in 5 months on respite care home fees and on maintaining call in care in her house and rent on her house- the social worker said she would be considered as having made herself homeless if she gave up her house before she had anywhere permanent to go .

My aunt, however, is a nightmare and I wish I hadn't bothered at all getting involved.

@LuluBlakey1 sounds similar to my mum! She has Bipolar and can be an absolute pain in my backside, but tends to behave for everyone else. Even so, I get the feeling that they don’t like her. My problem with this is they’re paid to do their job and to remain professional.

where she is there are severe staff shortages with two carers to look after 23 high needs advanced dementia patients. They are shouting down the hallway yelling at residents ti shut up.

my mum has said a few things of what they’ve said/done to her but because she has told dibs in the last, unfortunately I take everything with a pinch of salt

It's difficult isn't it? She has put me in some awful positions by telling me outright lies about things carers have/have not done or have said to her and when I go to address them (because she's vulnerable and it's not fair if she isn't helped and treated as she should be, however much I am naffed off with her) it turns out they are outright lies. She just enjoys manipulating people and creating drama.

The place she lives now has a care app where they record every visit as soon as it takes place, times, what she is doing and any relevant conversation/events- and it is cross-referenced to the agreed tasks on her care plan. So I know what she eats and drinks, whether she has been showered or not (she often says no one has showered her but the truth is she is offered a shower every morning and turns it down 5 x a week), anything significant she has said or done , if she is well/unwell. It has cut down her opportunity to tell lies and be believed but she still creates drama and lies about things.

@LuluBlakey1 awful situation. Our mother has always been a fantasist and story teller. It massively hits you once other outside agencies are involved. Whe Dad was in hospital she kept sending horrible emails to try and get staff ‘sacked’. She told a reablement place he was in all his stuff had been stolen. It had not. To be fair she made me as kid take a jelly back to a shop because it didn’t set…1970 so many years ago but I do remember wobbling up the road to the village store terrified I would spill anything. I was 8. Jesus that really was crazy. Sorry to hijack with a daft story.

@LuluBlakey1 @BlueLegume

Wow. It’s like they’re the same person! My mum is exactly the same! Her bipolar can make her wicked at times, wicked and selfish. It’s hard to put every ounce of your energy and dedicate so much of your life into someone who does their very best to wind your up every day and try to cause arguments between the family by telling lies. It’s exhausting.

She does the same, says that carers have said or done something or that they’re saying no to her basic needs, so I call her bluff and say I’m going to call the home and complain to the manager. She soon backtracks.

she also uses me as a weapon against them. Tells them she’s going to ring me and get me to sort it out 🤦🏼‍♀️ erm no you’re not. I’m not your guard dog that you can unleash on people whenever you feel like it! I’m loyal and passionate but I’m not stupid. I know when there’s an arguement to be had and when to turn the other cheek because she’s lying.

I want a recording device of some sort in her room that is discreet and that she or the carers dont know about. That’s the only way we’re ever going to get to the bottom of it.

any suggestions for what could be used? The typical hidden cameras in teddies and clocks are too obvious and they would know. Plus I don’t really want a camera because I feel that’s a bit too much of an invasion of her privacy but maybe just a microphone?

life’s just rubbish at times with them isn’t it. It consumes me and she is on my mind from the second my eyes open at 5:30am. Even if I don’t go to see her for a few days and try to switch off, she doesn’t let me because she is constantly calling or leaving voicemails. The messages I get every day are impressive too, like actual essays over and over again. AL DAY LONG. It’s just draining it really is 😩

@CanadaCalls awful I agree. My sister and I have now become a target of the golden child baby brother. He either accuses us of not doing enough/interfering/not listening/swooping in -essentially whatever we do it never quite hits the spot. He upset my sister yesterday and when I challenged him he just spouted a word salad of how important the care of his Mum is to him. Not sure where he was until 2023 - never really bothered with her unless he needed something. There are too many unpleasant elderly people out there creating such problems for a whole generation-my sis and I spent most of yesterday together me trying to console her. She messaged me late last night saying she thinks she needs to see her GP as her anxiety is so bad. We are both quite dignified people our brother is a hothead who doesn’t listen and is frankly enabling our mother to disengage with the world. She needs psychiatric help but he cannot/will not see this. We are quite simply not qualified to deal with her and never have been.

@CanadaCalls firstly, the care home is below mining staffing and sounds awful in terms of practice. Shouting at residents to shut up is abuse. I would be calling CQC were I you.

It doesn't matter whether your Mum is 'liked' by the staff. Or it shouldn't. As a care home manager all my people were treated the same, wether they were sweet older ladies or the kind of older people
That kick and swear and bite. Dignity and respect to all of them. That's the job. If they aren't doing it then they need to be bloody well pulled up on it.

Has she still got her own house? Might live in care at home be an option for her?

Again, Wow! Your story is literally my story!! It feels so good to know it really isn’t just me!

My mum has been the centre of everyone’s attention since she was 14 and diagnosed with Bipolar (she’s now 67). Everyone rallied round her, mum Nan and grandad and my aunt and uncle (her sister). If she was in a manic episode, she would have me on night buses at 3am and I just remember being here there and everywhere with her. My brother wasn’t with us for some reason, can’t even remember or think where he would have been! Then when she was in a depressed state, my aunt and uncle would take us away to their house where we would stay for weeks/months until she was better, and she would stay with my Nan and grandad and they would look after her.

So we were shielded from it as children which I am so grateful for as despite everything we’re going through now, I don’t have a huge amount of childhood trauma from it. Then I reached an age where she deemed me old enough to handle her crap and her anger and frustrations were then turned to me and the medalling in my life began. It was never directed at my brother, plus he was older and out all the time.

Over the years there have been many fall outs with her and us resulting in long periods of not speaking (longest stretch was 4 years). When I got the call from my aunt who lives next door to her and also wasn’t speaking to her at the time, to say the ambulance was there and she’d had a major stroke, we weren’t speaking.

I forgot everything and was there for her day and night for almost a year now. My brother has not had to take on anything. His life hasn’t changed where mine has quite literally been turned upside down. He is the golden boy. He can go 3 months without seeing her but that’s fine, she tells me ‘oh he’s so busy, I can’t ask him to do anything’. Ok what about me then mum, is my life not busy or does that not even matter to you??? 🤦🏼‍♀️

Everything has come second to her, including my two children (13 and 11) and I’ve decided last night enough is enough.

yesterday I took my kids to a theme park for Halloween and for some reason she decided to show her true self to my brother and his wife instead of me that day. By the time I got back I had phone calls and messages from both of them up in arms over her behaviour during the day (via telephone as she’s in the care home bear in mind) and how crazy she is.

I WAS ECSTATIC!! Finally, they got the tiniest of snippets of what I deal with on a daily basis! I’ve been telling them over these last 10 months how bad it is, how I’m struggling with her and need help but they’ve either not believed me or have just not wanted to get involved. I’m am so God damned thankful for yesterday! They now believe me and agree what a living nightmare she is!

last night I had a heart to heart with my youngest who has just started secondary school and he’s really struggling with the work. His little chin was wobbling when he said ‘I know you’re busy with nanny, that’s why I don’t ask you for help’.

That was the turning point for me. No more. My kids must come first.

Cannot tell you how good it feels to get stuff off of my chest to somebody who understands, thank you ☺️

@piscofrisco I agree. Regardless of their feelings for her, they should remain professional throughout.

Thing is, she winds us up as a family but I think she’s now extended it to the carers (she is very good at hiding her craziness from outside people and preserves it all for me) and it’s driving them mad!

I do agree that they need to remain professional but I also think they’re only human, it must get to them.

Shes telling lies about what goes on in the care home to us but then when we threaten ti speak to the home about it, she backtracks.

Earlier in the week she told me that a carer was in her face having a go at her and that I need to go in there and sort them out! I broke it all down and it turns out they wasn’t in her face 🤦🏼‍♀️

When I can’t believe anything she says, it’s hard to take anything she says seriously and not wonder if she’s lying or not. So they could be speaking to her like crap and neglecting her but she’s lied so many times that I don’t believe her.

it’s just a rubbish situation it really is.

Yes she has her own property but her therapy team and social worker have said it would be unsafe for her to return home due to her mobility and mental health needs.

@CanadaCalls oh poor DS - that update brought a tear to my eye. My kids are grown up now but they still need me and I know that they are not speaking to me as they used to because of what’s going on with my mother. Spent some time with my DD a few weeks ago and felt like I have missed out on several things that she has had going on all because ’she didn’t want to worry me with everything going on with granny’. My mother as your has always had to be centre of attention. Please stay strong and stick to your guns. You can still care about your mother without her being your first priority. Our brother seems to think if we do not declare our mother as our main priority that equals us not caring. Part of the issue is he has never really acknowledged what she is like so it has come of a bit of a shock to realise she is not a nice person and manipulates everything to get her own way.