Not understanding why she needs residential care

[TheRemainsOfTheDayCream]

My aunt (82, dementia, physically frail) has been in respite care for four or five weeks and is feeling much better thanks to the care. She's eating properly, taking her meds, etc. The next step is to get her into a permanent residential home nearer family. However, she is adamant that she doesn't need care and can go home. When she was at home, she was living in squalor, not eating, drinking too much, etc. She had carers, briefly, but shouted at them and sent them away. Since moving into the care home, she's eating properly, taking her meds, etc.

She's getting really cross with me about the move to permanent care and I don't know what to do or say. She says she is better now so she should go home. I have never been blunt enough to say 'You have dementia and it's going to get worse', but I'm tempted. However, she will just forget I've said it, so it's pointless, really. And she has no insight into her condition, which I believe is quite common with dementia.

Can the social worker override it if my aunt refuses to go?

Next week, the manager of the prospective care home is visiting to assess her and I know my aunt will tell her she doesn't want to go. What happens then?!

This must be a common problem. How do you deal with it?

Dias she still have capacity? Do you have power of attorney? If she does, I don’t think there is anything you can do to force her against her will. She will go home until the next crisis happens and then you start again. Who has assessed her and decided she needs residential care? You or health care professionals or social services?

She never arranged poa, @smartiepants70,so no, I don't. I had legal advice recently and they said it would cost approx £1000 for someone to visit her and judge whether she still has capacity.

She was living with - and being looked after by - a friend who has now died. She can go back to her old house but she doesn't remember it and she won't be able to manage the steep staircase.

The social worker decided she needed residential care after the care plan at home (her friend's house) failed. At that time, my aunt was in agreement.

She has no family to care for her if she goes home as I live 100 miles away and her sister - who lives near - is older and not in good health herself

She is judged as a vulnerable adult by social care. I had to raise safeguarding concerns with them twice. In addition to her dementia, she is also alcohol dependent, although she has been off alcohol since she moved to the care home (another reason she feels better).

Who will be paying for her care? Surely social services will do an assessment to check capacity? This may be one of those situations where you have to step back and let them do it. You can’t force it. You have no authority.

For her to be considered capable of making the decision to go home instead of to residential care she would need to show she is able to understand the decision she is making and what might happen in either case; so weigh up the pros and cons and remember them long enough to make the decision. If she can't remember the home she'd be going to that seems like a bit of a non starter.

But if she can show that she understands the risks of going home but wants to take those risks then that is a decision she is allowed to make.

Inevitably, given the drinking and the dementia, if she does go home it won't be long before the next crisis.

Definitely needs capacity assessment which can be done by social worker, GP or District Nurse if she is under their care for anything. If she has capacity not much you can do, sometimes as sad as it is people have to ‘fail’ at home to make them realise they need care. I feel for you. Has she had a full package of care at home? Was she safe in terms of being around gas, making hot drinks/food, not wandering etc….. ?

@Smartiepants79- she originally agreed to pay for her care which means selling her house, but I think she might backtrack on that.

She was visited by a social worker so I assume she did a care assessment. The social worker is on holiday, but I will ring her to ask if she's able to judge mental capacity.

@Smartiepants79- and no, I have no authority but I'm the one who has been advocating for my aunt and managing her affairs. If she goes home, I can't continue to help her.

@LadyGardenersQuestionTime - she can't remember things from one day to the next. When she phoned my mum this morning, she had already forgotten everything I told her about the next steps when I spoke to her yesterday. Of course, she doesn't realise this and thinks she's fine.

It would be disastrous if she went home and I'm worried about the impact on my mum who is already struggling with the situation.

@givingupimdone- she went into hospital because she became so ill through self-neglect and alcohol consumption, then was discharged with a care package that failed. I organised a meal delivery service, but she couldn't even cope with that: she just left the meals uneaten, piling up in their foil trays.

Her home had to be cleaned by men in hazmat suits before she was allowed back - that's how bad it was.

No you can’t, and sadly that may be what is necessary in order to force the situation. She needs be assessed for capacity as soon as possible. You need to be very clear and ruthless about what you can or can’t help with. How does your mum get her information about how her sister is getting on? If it’s from you, be more circumspect about what you tell her.

@Smartiepants79- it's easy for me to be clear about what I can offer because I live so far away, work full time and have two dependent adult children with additional needs, so there is no way I can support my aunt more than I'm doing already. I've made this very plain to the social worker. Social work were rubbish at first, but this social worker has been great so I will contact her for advice once she's back. She may just say she's decided my aunt doesn't have capacity already.

I am careful about what I tell my mum, but I can't stop my aunt phoning her.

I lost a day's pay to visit care homes on Friday. The only two homes on offer were like chalk and cheese: one was dark, claustrophobic and smelly and the dementia unit was one of the saddest places I've ever seen; the other was light, spacious, smelt fresh and had welcoming staff. The residents all looked well cared for. So obviously I have chosen the latter. It will be gutting if my aunt decides, after all this, that she won't go. I know it's down to her dementia and it's not her fault, but it makes me quite annoyed.

Have you considered live-in carers?

@Branleuse- thank you, but there is no room for live-in carers in her tiny house and she refused to cooperate with the agency carers who visited after hospital. She was frightened of them and thought they were stealing from her and having parties in her kitchen.

Just say that it’s not an option to go home as it’s been ruled it’s not safe. Then say oh you’ll love the new place you’re staying it’s just as nice as here and you’ll have cleaners and chefs all inclusive!

@AtlasCedar- I like that. She will then ask why it's not safe and I can say 'the steep stairs'! This is actually a real risk: the elderly woman who lived there before my aunt died falling down those stairs.

However, she will then ask why she can't go into a flat or sheltered housing instead, so I'll need an answer for that.

I've just spoken to a carer at her care home because she's been in tears on the phone to my mum and I wanted someone to check on her. He said she'd actually only just returned to her room after joining the other residents for lunch in the dining-room. He also said she's been searching for wine in the home, so I wonder if that is partly behind her desire to go home: she thinks she can start drinking again.

He added that she can't possibly live at home.

You say that the council won’t put her in a flat or sheltered because they have run out. That they needed any flats that came up for families with little children who were unsafe and homeless (if she’s sympathetic to that sort of thing). And that the sheltered housing has run out completely but wasn’t very nice anyway and was full of lots of odd people.

Just tell her there’s a gas leak at home/leaky roof/problems with the electric and she can’t go home until it’s been fixed by the council. On repeat.
All the flats are full. If the worse happens and she does get back home, withdraw all care and input immediately. And make sure Ss know beforehand she will be home alone with zero input from family.

We found it impossible to get a diagnosis of loss of mental capacity for MIL, and in our experience adult social care prioritised her wish to return home over our opinion that she couldn’t manage - she had dementia and Alzheimer’s which made her very confused and paranoid, but she was still looking after herself in terms of cleanliness.

Although things vary regionally, I agree with PPs there is almost nothing you can do at this point. When people assert that ‘the families must do more to look after their elderly’ they assume that the elderly are all grateful and cooperative recipients, and that’s not always the case.

We found with DFIL that we said his home needed work done to make it safe and ready and he would be more comfortable is the home rather than the assessment centre which was very hospital like. He was taken there by hospital transport and we were advised not to visit for a week. He settled in during this time. For the next few months when we visited he’d still ask about going home but was always calmed by the response of it being nearly ready. Because of the dementia he never remembered from one visit to the next. He is much healthier in the home with good food and care, company and things to do.

Your aunt will need a seperate Deprivation of Liberty Safeguards assessment to rubber stamp the placement. The social worker can guide you re finances. If your 100 miles away you can ask to be present at meetings online. She is in a safe place and nothing will happen quickly.

@AtlasCedar - you're good at this! I'm taking notes...

GP's and nurses can't do capacity assessments for social care decisions, only medical ones.

@DemonsandMosquitoes - thanks - I can use the 'unsafe staircase' reasoning, but she also has mice so I could add that as another issue that needs fixing.

I genuinely cannot care for my aunt if she goes home and neither can my mum. I've made this very clear to the social worker.