Care home sent her back

[WickerShit]

Mum (78) has Alzheimer's, diagnosed 2018, being cared for at home by my 85 year old step-father. Things have been really awful for a long time.

She is very very bad now crying and distressed a lot of the time, hallucinating, not washing or changing her clothes.

We have been pushing and pushing for them to get help (carers etc) and SF wouldn't have it said Mum would not accept any help from anyone but family. There's a lot more to the history of the last few years as you can imagine.

This month things came to a head with paramedics being called/hospital visits finally people seemed to start to sit up and listen and after a very bumpy ride very emotional and stressful she was found a place in a home which we moved her into. She went in Thurs lunchtime. By 7 pm they had called us and said they couldn't cope and we'd have to take her home. She was verbally and physically aggressive and throwing drinks / food at the walls.

Back home she is now calmer than that but back to crying and moaning and wandering round unable to settle. And still in the same clothes, hadn't washed for weeks,

When they called SF yesterday afternoon and asked how things are he said 'fine' . Someone called us yesterday and said if he continues to say 'fine' the authorities will move on and no more help will be offered.

Me and my step-sister have PoA. Just wondering what the next step is. So sad as I really thought on Thursday we'd finally moved on to the next albeit upsetting phase but no back to the nightmare again.

Which country are you in? I don't want to give you incorrect info.

Depends what you mean by 'big city'.

However I've seen patients from London in a specialist home over an hour north of London because it was genuinely the only place to meet their needs.

So it could well be that these 4 homes are the ones they deal with a lot and know can manage the level of complexity.

I think it's likely that the four homes they're considering are the only ones geared up for severely mentally ill residents.

Assuming you are in the UK, at least in our experience, no that’s not really how it works.

We had almost this exact situation with my aunt just before Christmas. The list they have given you will be the list of places that can actually cater to her needs, we also had this and we only had 3 options.

You cannot just describe her needs to homes to “see” if they can meet them, she needs a proper assessment and you then provide that to the homes. My advice would be to go with the homes you have been recommended though as moving from home to home will only cause extra stress.

With regards to “adding money”- it doesn’t really work like that in our experience.

As far as cost is concerned, it's not always the most expensive homes which are the best.

And what you're looking for is the best fit for her, not the dearest home.

I do get what you're saying. But you need to find out which homes have the most experienced staff, not which homes have the nicest bedrooms. I hope that makes sense.

Most expensive can mean more staff with higher training levels - in which case you would be expecting them to be advertising about how complex the patients they have are.

However it commonly means fancy soft furnishings, posh looking meals, a nice garden and no more skill than the cheap place.

It's early days in terms of assessment, stabilising, and treatment. It's a good idea to look at the homes that will be likely to cope, to make it a little less pressured when the time comes. But maybe wait until you're feeling a little less frazzled.

We were able to pay a top-up in addition to the s 117 funding for MIL to have a bigger en suite room. One home we looked at was much more expensive for even the smallest room than that funding would have covered, but they were also willing to accept top-ups. (I don't think they'd have taken her, or kept her for very long if they had.) However the number of places that can cater for this level of need is very small, wherever you are.

Apologies for the delay in coming back I've been struggling a bit this week (with other life/family/work pressures on top of Mum's care - the joy of being a middle aged woman.)

We are in England. Yes I have now gave very similar conversations with an Admiral Nurse and a Social Worker both involved in Mum's case.

I totally get that in a lot of more expensive care/nursing homes you are paying for bells and whistles not 'better' care. There is one beautiful one near me, much more expensive than the others. Looks lovely. But I have heard mixed reviews. The things which you're paying extra for isn't the kind of stuff which patients with the highest needs are going to even notice let alone benefit from. I know of one woman who was paying an extra additional fee for someone to sit with her mother for 'company'. But her meds meant she was asleep most of the time so you were effectively paying a significant hourly cost for someone to watch her sleep!

I hope I can explain myself here. I was just trying to establish that if she got allocated a place we weren't happy with for any reason - is it possible to 'buy' yourself out of the situation. Morally that sticks in my throat and obviously on a societal level I would want the same opportunity for care and dignity for all people regardless of means but as we all know when you're desperate and it's your family at risk you'll do anything you can to help them.

In actual fact I/we don't necessarily have the means to throw untold money at the problem - don't get me wrong. But for my own peace of mind I just wanted to be able to tell myself I am doing everything I can, I'm not missing something.

I did ask what the very rich do with their severely mentally ill relatives. Didn't really get an answer for that. Like a 'Elderly Mentally Infirm' version of the posh rehab clinics you hear about in London.

Back in the real world I've been firmly (but kindly) told to just sit tight and let the hospital do their job. Nothing more will be happening now for quite some time the assessment process will be at least 4 weeks and most probably quite a bit longer than that.

if she is out somewhere we don't like can we buy our way into somewhere better? You could buy your way into somewhere more expensive. You would be wrong to assume that more expensive was necessarily better.

There’s two levels of nursing care, there’s NHS funded nursing care paid direct to the home which may not make any difference because the quoted fees assume you’re eligible for that, and there’s CHC funding which is exceedingly difficult to get. If she doesn’t have savings or a house to sell, then the LA will fund, and you can pay “top ups”.

@WickerShit I'm glad you came back to the thread.
It sounds as though Mum will either be FNC or CHC, unless she goes onto a Section 3 in which case she may get 117 funding.

If she is FNC the NHS will pay about £190 a week towards her care and the rest will be means tested, if she owns her home a charge will be put against it etc.

If she is CHC (quite unlikely so don't hold your breath) the NHS will pay all of her fees, up to their agreed level.

You've been given 4 homes to consider, that could be because they are only specialist EMI homes available, there could be more homes but the LA aren't placing with them due to concerns, or they could be the only ones in budget. You can normally pay a top up or betterment fee if you wish to go to a more expensive home, but bear in mind you don't want to move Mum again, so make sure you have adequate funds for her to see out her days there.

Normally fees are paid to general nursing homes, not EMI, as the cheese and wine evenings, extravagant entertainment and posh carpets are not appreciated by the EMI residents, they usually benefit from a more low stimulus environment.

Hope that all makes sense x

Sorry you are going through this. I used to work in dementia and neurological care and could I suggest music therapy, it has shown to calm people and you see a reflection of that person was like before. I really hope you find a placement that is more suitable.

Hi OP.

When I worked for a very rich family, where the dad had the sort of severe and aggressive dementia you mention, their solution was to pay for two private carers to be with him 24/7, and one extra person to come in and cook lunch for him and do the cleaning.

That was an unusual and exceptional situation.

Fifteen years ago, this cost £250 a day.

The family wanted him to remain at home at all costs. He had held one carer at bay with a knife prior to this arrangement, and had been removed by the police and sectioned. The family couldn't believe that no private facilities existed for severely mentally ill dementia patients.

This family were very well known and very wealthy.

This is so tough. From personal experience dealing with someone at this stage of Dementia is heartbreaking.

Can I please recommend you speak to the Beacon, the NHS funds it, and you can call their helpline. If it is still the same as when we went through it as a family you are offered a 90-minute free consultation which will help you. They can advise if your Mum would be entitled to Continuing Health Care funding.

This is not a fun process to go through but care is so expensive and at this stage in Dementia you do need very specialist care.

https://beaconchc.co.uk/

I have viewed 12 nursing homes for my DM and she has now been in 2. The thing that makes the most difference to care in my opinion is the staff to resident ratio.