Refusing to be a carer

[Curiousincidence]

DF has mixed dementia, in a care home self funded as his condition meant he wasnt safe at home, needed constant supervision, high risk of falling, incontinent, getting out of the house and lost etc. DM has health issues, in 80’s, pre DF going into care, DM wasnt sleeping, hardly eating, constantly in tears. Fast forward to now, DF has been in care for five months self funded while social care carry out assessment. Financial assessment done, social worker agreed they felt he was well over the threshold for permanent care. However that recommendation hasnt been approved and now social care is talking about assessments to help with home adaptations so DF can come home. Not only are they now well under the threshold in terms of savings to self fund, DF and DM will run out of savings to pay for care in the next two months if Social Care will not approve care home care.

My question is about DM, who was unable to cope before and certainly wont cope now. What happens if she says no to being a full-time carer (and by that I mean 24/7, hardly able to leave the room, locked in the house because of his roaming etc). What are her rights? Is there anything we can do to challenge if the assessments say he can come home when we have safeguarding worries for DH and DM and know the social worker has agreed that living at home is not an option. Do they have to assess whether its safe for DF to come home and live independently without DMs support (but with likely 3x a day half hour care visits that are likely to be proposed) if we can demonstrate DM’s health issues and mobility are such that she cant be a carer.

She can just say no. Contact the Alzheimer’s society to see if they can help you with this.

Financial assessment done, social worker agreed they felt he was well over the threshold for permanent care. However that recommendation hasnt been approved

This is the relevant bit. You need to talk to social services (Adult Social Care) and point out what that SW found on assessment, firmly. Be very clear that your mother is unable to be a carer and if they send him home she will be leaving the house and completely unavailable to provide any care whatever. If he co-owns the house, they can't stop him coming home if he requests it, but it doesn't sound as if that's the case or if he has capacity to make that decision.

You will need to be very strong but the alternative sounds like a nightmare for everyone concerned, most importantly your parents.

Thank you for your comments. Yes in terms of capacity he wouldn’t be able to answer in terms of his wishes. He’s almost non-verbal now apart from some yes/no/bye words. He wouldn’t be able to tell someone who we were, or find the word for wife. I doubt he’d be able to pick out his house from a photo of the street as he didnt know where he lived when he got lost on his road.

If you don't get anywhere at first, contact local councillor and MP with the details you've explained here.

This sounds like a frankly dangerous situation and I'm appalled they think a return home would work (saying this as a 24/7 carer and retired from nearly 30 years in social care)

Thank you for your comments. It does feel so surreal that it’s even floated as a possibilty that he comes home.

Has your DM had an assessment OP?

She’s not. I did make a social care referral for her too a couple of years ago but she refused it as she said it wasnt help for herself that was needed.

One more question for anyone reading with experience. If the care home thought the return home wasnt safe (knowing the person who has been in their care and having seen the mobility and capacity to support of the person’s partner) is it likely they’d submit a safeguarding referral if DF had to return home?

Definitely refuse.

You have to be very firm and clear with them. Cal them, again and again. If the person you are talking to cannot help you, ask to speak to their line manager.

You have an assessment saying that he needs care home care (well over the threshold!) and they have not provided a full care package to ensure he is cared for adequately at home. He is also already in a care home which is good.

My tactic would be to keep chasing for the approval of the original recommendation. Ask them why this appears to have been changed to care at home, say you assume this is a mistake as your DF's condition definitely hasn't improved since the recommendation was made and that your DM is not able to take on any of his care needs herself.

All that is bat shit.

How 80 years old woman can cope with that.

Who are they to take her money away for his care.

Jesus .... challenge, challenge, challenge....a disaster waiting to happen. Put in a written complaint , nothing works faster. Good luck.

So he's in a care home and his self funding is running out? Why has the staying in full time care not been approved? Did the social worker not file the assessment? Ring adult social care first thing tomorrow. Find out what happened to the assessment saying he was over threshold (I'm saying this as we had a social worker do an assessment on my mum and then disappear for 8 months) ask to speak to the team manager.
If what they are saying is that they aren't paying for his current placement when his self funding runs out, you may have to look at a different care home (this actually happened to my dad, they placed him in one home straight from hospital and moved him 6 weeks later when the NHS funding ran out) I've often known people have to move placements when moving from self funding to council funding as it's all about budgets, but I'm confused how they decided he can come home. Also, all your mum has to keep saying is no

Thanks for your feedback. It’s not the specific home but our assertion (and that of that social worker) that the only option is residential care that is being questioned. We choose a home that was one of the less costly in the area, and one that accepts the rates that the local authority pays without requiring top up. We’ve been told the issue is funding and that we havent exhausted the “at home” support that could be put in place before resorting to residential care. However none of this support is available through the night when DM would need it most. If it was viable support we’d have gone with this rather than self funded 24/7 care.

We will continue to push back and DM is refusing a carer role. Thanks again for your comments.

My father in law point blank told the local authority that he was refusing to allow his wife back in the home as he

People are unaware until they come right up to it how awful the social care funding gap is...
Really sorry this is happening to your parents OP. I would agree with other posters regarding contacting adult social care and ask to speak to a manager. Highlight the safeguarding ( both your mother and father would be at risk at home due to the acuity of his needs and your mum's vulnerabilities ) concerns you have and seek to make a safeguarding referral. Request a carers assessment for your mum.
Ask for a written care plan of how your dad's identified and eligible needs could be met by homecare , including his night time needs - they obviously can't.

Encourage your mum to refuse to have dad home on the grounds that she cannot manage his needs. Xx

She mustn’t move out of the house as it creates issues with funding. Just keep saying no-it’s hard. Sending much love x

Someone with that level of dementia cannot possibly be safe at home with one other elderly person. He needs 24/7 waking supervision and a secure safe professional environment for his own safety and hers.

It must be a mistake in the original assessment (lost in system?) .

My mum is a dementia sufferer with similar needs, my poor dad was on his knees before she went into a full-time home. She couldn't be left alone for 5 minutes.

You haven't tried at home carers because the person's needs are way beyond that level. Your mum was providing 24 hour care but she can't and won't do it any more and his dementia will only have got worse.

I hope you get sorted and I'm watching with interest as we will probably have the same battle soon when DM's savings run down to the self funding level.

The Alzheimer's Society Dementia support forum is very helpful on this stuff, I've had very good advice and solid support from them.

I think they would flag it at any discharge planning meeting with the expectation that the hospital social worker would address any concerns and decide if safeguarding threshold was met

Social workers do a wonderful job but like doctors, they can make terrible decisions and the odd mistake. My dad was recommended a local care home by our (ever changing SW) - always on holiday or unavailable when you need them - in 3 years barely got to know one by name - anyway, the home was absolutely DREADFUL. Lovely area (don’t be fooled people), staff shortages astronomical inside. Gave us the tea and biscuits in first hour - all lovely when we got there-still waiting for someone to come and ‘let us go’ 3 hours later. At that point our DD couldn’t stand upright without falling backwards so how on earth were we meant I leave him? Unbelievable. I eventually went to the managers office and asked how we could be reassured he would be cared for and how could we leave? Manager reassured us (in inverted commas)
and got someone to see to him. We stayed another hour (DM desperate for a break I’d 24/7 caring), and all left in tears. That night he was admitted to hospital after a fall. Blood pressure had been dangerously high. Luckily he was ok. We brought him home after that. Looking back, all residents appeared to have had ‘full nappies’ - you can see when they are in communal living area. This is a direct result of either being understaffed or neglect. But the biggest giveaway to us should have been - smelled of urine when we first went in. Buzzers in corridors going off constantly.
That was my first experience of taking a social worker’s ‘advice’. Gut instinct should have prevailed, but like many others we were distraught at having to leave him in one in the first place and overlooked our gut instincts at the time-shouldn’t have even left him there for one night. You live and learn.

I realise this post is from a few weeks ago, but hope you and your family are coping OP 💐
We had a similar situation with my in-laws. My FIL had mixed dementia and Alzheimer's and my MIL understandably couldn't cope with him at home in the end. He ended up in hospital due to a fall (which didn't injure him badly) and after discussions with hospital staff and social services, it was decided FIL needed residential care.
Despite this, while a home was being found that could take him, my MIL received daily calls from the hospital, wanting to discharge him back home and in the end, she became so terrified of an ambulance turning up at the house and unloading him, that she moved out of their house and into our house 200 miles away, so that there would be no-one there to take him if he was brought back to their house 😢 You and your family have my utmost sympathy.