Please help - 99-year-old grandmother with dementia being evicted from care home

[DiamondsAndRust]

Have also posted this in Elderly Parents, but thought there might be some Mumsnetters here with greater knowledge of the care system.

Really not sure where else to turn with this - have tried Age Concern etc, but so far they have been unable to provide much in the way of assistance. Any advice from those with legal experience, or knowledge of care homes/geriatric medicine/psychiatry would be hugely appreciated. Not sure if anyone actually can help with this, though, as it's a bit of a minefield, but here goes...

I'm writing this on behalf of my 99-year-old grandmother, who suffers from severe vascular dementia and Alzheimer's. She is currently in a local care home which, care and facilities-wise, we've been very happy with. However, she has recently deteriorated to the point where they now feel unable to cope with her, despite being a designated dementia care centre. In recent weeks they have resorted to medicating her to the extent that she is continually drooling and appears pretty much comatose. Without the medication, she constantly calls out and is abusive towards other residents. Apparently this goes on all day and all night. Unfortunately, her dementia is increasingly manifesting itself though violent outbursts, and while she says she is aware of her behaviour, she is powerless to stop herself.

Things have now come to a head, and this week the care home has given my grandmother 28 days notice to leave. They claim that she is putting herself and other residents at risk, and that she needs a more secure unit, with staff who have more extensive training in mental health issues. However, they are unable to advise us on where such units might be found, which the 'good' ones are, and how exactly their facilities would help matters. Originally they wanted to hospitalise her, 'in order to sort out her drugs' but since we were very resistant to her going into hospital (there is nothing physically wrong with her and we felt that this was a ruse to get rid of her), they have now come straight out and asked her to leave.

My question now is really twofold: 1) Does my grandmother (or, in effect, my mother, who now has power of attorney over her affairs) have any rights at all regarding where she lives? She is self-funding, which means she has been forced to sell her flat and has already paid out over £100,000 to the care home that is now trying to evict her. In having to leave, it seems that her 'choice' is either to languish in a hospital as a 'bed blocker', or to pay for another home not of her (or our) choosing. 2) How would a dedicated severe dementia unit be of benefit to my grandmother at this stage? I'm really struggling to see what such a unit can do differently from where she is at present; the few secure units I've visited have seemed uniformly grim, with she has already been given pretty much every dementia drug going, so there is little scope for improvement there.

Her current care home has stated that they suspect at least some of her traits are 'behavioural' - i.e. due to her character, rather than the result of her dementia. I am inclined to agree with them to some extent; she has always been a 'difficult' character, and very stubborn. If this is the case, though, are they not just trying to pass the buck by evicting her? An alternative care home is not going to be able to alter this, so it seems that she runs the risk of potentially being asked to leave the next one too, if she displays similarly disruptive behaviour. The possibility of another, underlying mental health issue such as schizophrenia has also been mooted, which might be exacerbating her problems. Is there any way that this can be tested for, or does the presence of the dementia make this impossible? Is it worth getting a psychiatrist involved?

Really not sure where to go with this; at 99 she is far too old to be shipped around like a parcel, and there is no way that my parents could care for her themselves, as they're in their '70s and my dad is currently recovering from a triple heart bypass. Any advice on where to turn next?

[FreeLikeABird]

I am sorry to hear this. Have you been in contact with social services? If not I would suggest calling them, they can then advise on your rights and also suggest homes in your area that can help with your grandmothers needs.

[glammanana]

How sad it is to read this and what a disgrace on behalf of the care home she is in now for their lack of help & empathy,does your GM have a Social Worker if not get in touch with SS asap,you say your nana is self funding if she has been diagnosed with Dementia & Alzhemiers she should be classed as requiring nursing care so no care charges should be paid by the family get this sorted asap also and make the Care Home she is in now aware that you know this and request a refund of those misplaced fee's.Get your nana's Doctor on your side and do not allow her to be bullied by these thoughtless people,they should be well aware of the other options you have and who will accept your nana. Best of Luck

[DiamondsAndRust]

Thanks for responses so far. glammanana it is my understanding (after seemingly endless discussions with social services/medical professionals/care homes) that fees are only met by the State if the person's needs are medical, rather than dementia-related. Since she's fairly robust physically and, until now, she hasn't needed nursing care as such, she has had to meet the cost herself. However, it may be the case that her needs have now changed, so we're going to get her reassessed. She's now down to the last £50,000 of her savings anyway, after which her care needs will have to be met by the council.

Sadly my nan's GP seems fairly clueless where all of this is concerned - she was in the meeting today and seemed utterly out of her depth. She had also previously prescribed her with diazepam (as a sedative), which is actually linked to worsening dementia symptoms, and it was only after I did a bit of research on this myself that this was stopped.

I think next port of call will definitely be social services (they have assessed her previously, but not recently) and to organise another mental health assessment. Also looking at getting a council advocate involved, as it does sometimes feel that the care homes (being run as businesses) and the council (being out to cut costs) are ganging up on you!

The most frustrating thing is that there's no joined-up thinking, no over-arching strategy and precious little independent, comprehensive advice available. It all seems so complicated (I think, in part, this is deliberate, so that people are discouraged from claiming the few benefits they might be entitled to, e.g. attendance allowance - we had to fight tooth and nail for this too).

[aprilanne]

hello diamonds and rust .i am sorry your grandmother is being treated in this way .i have worked as a nurse for care of the elderly .so as far as i am aware .if the home she is in cannot support her needs then it can indeed basically give her notice .if you refuse to move her .the social work should be able to find alternative accomadation .and when her savings below £16.000 she will get local authority help
.they may move her to a local hospital like an nhs home temporarily until they find something suitable .under no circumstances offer to take her home unless you can cope for a while
.because if bed blocking they will get her a place because nhs charges social work .department for everyday and elderly person who should be in care bed blocks in is usually between £50 /£30 per day .so they will help .but if at home they will take months .hope it works out ok .what she needs in nursing home not care home .

[DowntonTrout]

I went through a similar thing last year with my mother.

Firstly, I'm afraid the care home is entitled to ask you to find somewhere else. It maybe that they feel they can no longer meet her needs or that she has become too disruptive and it is affecting the other residents.

There is some confusion over specialist dementia care homes, EMI care, nursing care etc. mum was in a residential home with separate dementia unit but not EMI. She was self funding but when we reached crisis point she was admitted to hospital and at that point we got social services involved. Their assessment meant that it was accepted that mums current home could no longer meet her needs, EMI was not suitable and mum then qualified for Continuing Health Care funding and we were able to find a suitable nursing home specialising in dementia. Mums fees were paid from then on until she died.

What I would say is if you have not had a SS assessment, get one. They will drag their feet but push, push, push. Hospital may not be as bad an option as you think as once she is in the system it is much easier to get help. Whilst she is paying SS won't be interested.

Hospital also means that you get direct care and that a dementia consultant will be on the case with your GMs meds and this may improve things. Once she is in the hospital you can refuse to take her home or allow them to discharge your GM back to the home. In which case, again, SS will have to get involved.

I realise that is probably not what you want to hear but in my experience this is the best way forward. Moving someone at this point is never easy but if your GM is disruptive she is also likely to be distressed and if her current home cannot deal with her then you don't really want her to stay there anyway.

Good luck with everything. Ask questions, be pushy and prepare for a battle. The last few months I had with mum almost broke me but I never gave up and we got the best we could hope for in the end.

[DiamondsAndRust]

Thanks DowntonTrout for your wonderful, thoughtful response. What you say does ring true, as our situation sounds very similar to the one you had with your mum. I suspect, sadly, that there are many vulnerable elderly people stuck in the same position, and the self-funding aspect only seems to confuse things further.

We have found an alternative home that we like the look of, and which (apparently) caters for more severe cases of dementia. Mum went to have a look today and was impressed, but it remains to be seen whether it's suitable for my GM - it's another residential home rather than a nursing home, so she'd have to carry on paying full whack, and we definitely don't want to have to move her again in the event that they can't cope with her needs either. In the meantime, we have tried to contact GM's social worker - they're on holiday until the 19th, but we've asked for her case to be prioritised as much as possible due to the 28 day deadline for moving.

Thanks again for all responses - lots of food for thought.

[DiamondsAndRust]

UPDATE: Thanks agani for your helpful contributions. Latest on this is that my mum thought she had found an alternative residential home that caters for more severe dementia. She visited yesterday and all was looking positive, but today a representative visited her current care home and it's now looking as if they can't take her - they hadn't realised that she is essentially wheelchair-bound, and they said that her needs would be too great given the demands of the residents they have already. So back to square one.

However, they also said that she does not need nursing care. So at what point DOES residential care tip over into full nursing care, if a 99-year-old woman with severe dementia and who is incontinent and immobile without a wheelchair doesn't qualify? We're at the end of our tether, as it seems at this stage that there is literally nowhere to send her - residential care homes that are being run as commercial businesses are turning her down on the basis that they're overstretched and she's too demanding, but at the same time no one is willing to accept that she needs full-time nursing - possibly because this would mean the council having to contribute financially (she pays for everything at present).

We have requested a Continuing Health Care assessment, and a mental health assessment - her GP is reluctant, though, as she agrees with her current care home that her issues are 'probably behavioural'. We've also contacted her social worker, but they're away on holiday until next week.

My mum is really distraught about all this. When she called earlier today, she told me that she just wished my grandma would die - sounds incredibly harsh, but in her increasingly rare lucid moments my nan just tells everyone she wishes she were dead, and it really seems that the system has washed its hands of her.

[DowntonTrout]

Don't lose heart Diamonds

The system may have tried to wash it's hands but they can't if you don't let them. A nursing home did refuse us because they felt mum would be too demanding.

Remember what I said above. It is not the worse thing that could happen if your gran were to be admitted to hospital. Once she is there you are in a much stronger position.

I sat down with the social worker and went through mums CHC funding forms with a fine tooth comb. There were so many misrepresentations and down right lies on it. We would never have got the funding left as it was. People just tick boxes. I know it's not really the funding that bothers you- it wasn't for us, it was a means to an end that meant people finally accepted that mum did indeed need nursing care and we were able to then find the right place for her.

Once they have tried all they can with the meds and assessed your gran fully, they will want that bed free quick as you like. They will then have to find her somewhere as she will have nowhere to go.

I know it feels wrong but you have to play the system at its own game.