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.

Have you had a social worker in to assess?
Was it a home specialising in dementia, or just a care home?

She's had multiple assessments. Nothing since her discharge on Thursday. Yes it was a dementia home but they are saying they are not the right level for her needs. I might be getting the terminology wrong here but she needs a dementia nursing home or possibly admittance to a secure mental health unit. The thing is I know neither of those places will be all 'sunny lounge areas and wandering round the garden' and more 'asylum locked rooms sedation and restraints' which feels like a much huger leap than the one we were making to the care home environment. And tbh not one I think my SF will willingly agree to.

She will be worse while she settles. The move will obviously be frightening for her, she will lash out, but the home should expect that and have experience.
I know two people in dementia homes, they aren’t locked in, they go into the lounge.

OP thats very very unusual for a care home to not give someone a chance to settle in and to ring you and tell you to come and collect her. Was it actually you that spoke to them? Did you offer to go and get her or did they categorically tell you to?

You should have just left her to settle in. She can't leave without you taking her so she doesn't have a choice. If that happens again, don't take her.

I worked in a dementia nursing home when I was younger.
No one was restrained or locked in rooms. They had a lounge and other communal areas. All their rooms had personal touches

It just sounds like unfortunately you picked the wrong home for her needs. If it's not set up for someone then the home can't reasonably take in a resident who has more complex needs than they can cope with.
Can you just look at other options?

I’ve work in a dementia unit and it’s nothing like you think. I remember putting on loud music and them all dancing and walking round the garden repeatedly with one of them looking at birds. It wasn’t perfect and occasionally we’d get hit by them but there was caring and kindness.

Do you have an assigned social worker? If not, you need one. Speak to the GP. The SW is the first advocate for getting her in the right place.

Sooner or later something will happen that means police or medical teams tell your SF that she is no longer safe to live independently. At that point your SW will identify a suitable home.

If she was violently lashing out at the staff in the home, she'll do that to a member of the public, and that will be the trigger.

You have my deepest sympathies, dealing with someone who, while it probably (hopefully) comes from a place of love, is making very bad choices on your mother's behalf.

You need a social worker to advocate for better choices.

How will the care home be funded? This will have an influence on how much the medical teams push for her to be in a home. (And might be affecting your SF's decisions)

This sounds so hard. She really must be cared for either in a home or by carers. If they can pay privately for care, do that - find a care agency or a home and just organise it irrespective of what SF wants. Sorry that that sounds harsh but once older people get to this stage, nothing gets done if you don't do it yourself!
If they can't afford it, you need to start being difficult! The people that you've spoken to have done what they all do as a first step, which is take advantage of helpfulness! You need to find out who the 'someone' is who called. They're presumably from some branch of social care?? (it's different for different local authorities but if you can't find any info online ask GP)
You need to phone them and demand (cry, beg, exaggerate, tell them the worst things that have happened) help.
The alternative (which may be what happens anyway) is that you wait for the next crisis, get her taken into hospital and then make sure discharge home is refused. Then something has to be sorted.
Best of luck with it all. It's a horrible horrible situation.

That's an incorrect assumption, dementia nursing homes aren't like that at all and you can't just sedate someone because they're aggressive, though sometimes the GP does prescribe medication to calm someone if it's going to benefit them. The homes still have communal areas and activities running etc. maybe go and see some and see what you think

There absolutely won’t not be locked rooms or restraints!
There will be lounges, communal spaces, outdoor space (large gardens in some), activities, bbqs in summer, parties on occasion, animal visits, games, trips out, art , music, reminiscence, sensory stimulation, experienced staff, higher staff ratios than in residential homes… Go and look around a few, you will be surprised.

Oh, and no sedation. Doctors can prescribe medication if people are anxious/ distressed/ agitated but the purpose of that is not to sedate and if it has that effect they’d reduce the dose.

I used to work in a job facilitating discharges. The key difference between discharging to a care home and nursing home was unpredictable needs - care home staff can care for patients where it’s routine and they can give regular medication. Where a patient may vary, a nursing home would be best because a nurse can give additional meds where needed. My grandma was in a nursing home on the dementia unit and it had a sunny lounge and good care! You may need to look around but you can find somewhere.
Re your Step father - I would tel SS that you and your sister have POA and insist they contact you as well as him.
Good luck getting this sorted, I know it’s tough 💐

Sorry I am here just just on phone etc in reading through responses now to those who say we should have left her to settle we had no choice but to- they wouldn't keep her.

It was a dementia care home - she was accepted on the basis of her assessments however all of these have been done at home and with SD present. As soon as she is away from home she is much worse. And I think the violence of her response at being left there and no SD took everyone by surprise. She is physically still pretty strong and apparently she was shouting and swearing, going into other people's rooms, pushing people (other residents / staff) out if the way, threw full cup of coffee at a nurse, threw her dinner at the wall, held someone by the wrists shouting in their face.

Apparently they 'tried to get hold of a 1-1' mental health worker but couldn't get hold of anyone. Or a doctor. They were worried about the safety of the staff and other residents. I wasn't there but my step sister was not given the option to leave her there they insisted they took her home. I have asked what would have happened if we had refused or if we didn't exist and have been told they would have called police /ambulance and had her taken to A and E. not sure how A and E would have coped with her? Anyway staying there was not an option.

She needs to have a capacity assessment, if you have poa and she lacks capacity she can be assessed for the right level of care. Who collected her, it's unusual for a home to refuse a resident if they have assessed her first and agreed to take her. What sort of home was it, who arranged it. Dementia homes and long term pscyh units are not asylum locked rooms with restraints, you need to get that idea out of your heads so she is given the right help.

By the way I know lots dementia homes are very nice and have what you all describe - gardens games etc. my gran was in one and I visited her there. We have visited a few. The one we sent her to was like that. But these ones will not take her as they can't meet her needs. I'm not sure how another home will be able to meet her needs if she kicks off like that when she arrives? Does anyone know how a home should/would cope with the behaviour I have described? Other than sedation?

I work in dementia care and I can assure you it’s far from 'asylum locked rooms sedation and restraints' 😣You need to get a social worker allocated to your mother and look for an EMI nursing placement.

@DiamondGazette “I work in dementia care and I can assure you it’s far from 'asylum locked rooms sedation and restraints' 😣You need to get a social worker allocated to your mother and look for an EMI nursing placement.”

Great - could you please tell me in an EMI nursing placement how they would deal with the behaviour I described? So I know what I am expecting them to do - thank you ☺️

She's had a capacity assessments (at home) and came out as complex needs. This home has seen that assessment and agreed to take her but when she went postal they said they didn't have the capacity.

Did she go to a care home or a nursing home? What's her funding stream?

I have nothing to add in the way of advice as don't have experience of this but I'm sorry you're in this situation and hope it resolved soon . I can't imagine the stress you are under

We have the community crisis response team involved - we have two caseworkers currently looking for the right placement - we have an assigned Admiral Nurse also working with us. They are calling me and my step-sister and we are emphasising she needs to go somewhere. They are also calling my SD who is obviously a bit traumatised from the whole thing and as she is settled back at home when anyone calls him he says they are 'fine'

I've also worked as a carer in an EMI dementia care nursing home and the set-up looks the same, nice lounges, activities and events, gardens, personalized bedrooms, etc they cope by having a much higher ratio of staff and better training and pay. Everyone was highly trained in dementia care and de-escalation techniques. The building was designed to be dementia friendly. No one was ever sedated or physically restrained.

The place she went was an 'assisted living residence'. As I said they did see all her notes / assessments.