Emergency Care

[Peachycat01]

Hoping u can help with some advice. My dad has dementia and lives at home with my mum. I live very far from them both but in the UK.

Dad has limited verbal communication and very impaired short term memory. He knows he is at home, recognises me and mum. He is placid - generally walks up and down to the loo, watches TV and sleeps on and off. He couldn't be left alone overnight or for long periods during the day without a responsible adult being there.

Mum is an ex-nurse and happy to leave him for short periods in the middle of the day e.g. food shopping/meeting a friend with the ring camera on to watch him and/or asking his brothers or sisters to pop in/stay.

Mum's amazing but not a 'planner' and often refuses to discuss things with me. She often doesn't let me know about things until there is a crisis. I'm worrying about what to do if she ends up in hospital at short notice (she's in her 70s). It's a hypothetical but I like to be prepared as I have anxiety. Plus in those situations, other family members step back and it's just me to sort it.

Basically, I'd need care for dad fast and how do I get it asap, like within hours. What if it's out of office hours? I have POA for him. Sorry if this is a stupid question and one I should be able to work out for myself- just dreading being in an utter panic phoning nursing homes or social care numbers and being told phone lines are closed or they can't help me for whatever reason. Where do I start? Xx

Depends on whether you're looking at this privately or if they would be eligible for social services funding. If private you could contact some local private care companies and/or nursing homes, explain the situation arrange assessments so he's known to them as and when such a situation arises. They should be able to react fairly quickly. If SS funded you can find the local adult social care number and the out of hours emergency one (these things always happen on a weekend), then contact them in the eventuality.

This worries me too. My DM is at an earlier stage than your dad, but my dad's a bit older than your mum, and my big fear is what would happen if he were to suddenly die or become incapacitated. My best guess is that I would need to take immediate compassionate leave from work for a week or so to deal with the initial aftermath (difficult but possible), but after that I don't know. My DM would be extremely resistant to any care, but she'd also be unable to live alone (and of course she'd be in a total emotional tailspin if she'd just lost dad). I know that she'd want to come and stay with us - but my fear is that that would become permanent. I think it's hard when someone doesn't obviously need full on care (ie she doesn't yet need personal care, she can make a sandwich etc), but they couldn't live alone (huge anxiety, total inability to use any form of tech or do any admin, unable to cook a proper meal, short term memory awful, no real support network apart from dad).

I have arranged emergency care before, which took a few days to arrange privately, but that was more practical, after an elderly family member had an accident and was immobilised, and needed live in care to help look after them and their partner with dementia. But the difference was that the person was fully compos mentis and on board with the plan. In that case, we just phoned around private agencies until we found something.

Have they had a care assessment and a carers assessment from the local authority? In England and Wales, even if you are a self funder you are entitled to an assessment where they will advise on what care is needed, including emergency support (as long as you flag it). This puts both parents on the radar of the system, so that if something should happen to your Mum you can call and get care.

The funding/payment for the care (emergency or otherwise) is assessed separately.

My advice would be to contact the social care team and have a chat about your individual circumstance, and speak to your Mum about your worries about you providing support for your Dad if she wasn't well. And point out how much she would worry about him too if she was stuck in hospital with a broken leg waiting for surgery.

Do you have the phone number for your DF's SW? If he's choosing to doesn't have one, I'd second requesting a Care Needs Assessment for your DF and a Carers Assessment for your Dm but try and be there when they are carried out as they often say that they're coping just fine.

Is your DM in touch with the local Carer's Group? We found them really helpful when DFIL wasn't eventually persuaded to talk to them.

And if DF is being left, have you filled in the Herbert Protocol and have it ready to email?

Given the particular situation that you're worried about, I'd also fill in This Is Me and gave it saved and ready to email.

When my DMIL had an emergency admission for Delirium we were able to email it to the Ward and they were grateful as it helped to settle her.

Definitely make sure that they are known to their local social services. Get them on the list for an assessment, including a carers assessment. Short term your father would probably need to go into a care home/hospital and social services will be aware of where there are emergency beds even if they are reluctant to admit it.

There are also cards that you can get that your mum should carry that explains that someone who needs care is at home and will need looked after should anything happen to her when she is out.

Regarding phone numbers there will always be a 24 hour number for social services. It might be shared between a number of areas. Here 3 councils rotate the out of hours emergency service.

Thank you everyone - part of the issue is my mum blocking my input and refusing care assessments. She just shouts at me and shuts it down. We haven't got a good relationship so I am treading on eggshells with her. I think I will ask the question to social in their area - I would have to pay for his care.

Difficult if she just shouts. Has she always been like this or do you think it's fear of the future?

You wouldn't. If they have assets and or savings over 23K then it comes from that, tapering down to nothing when they get to about 14K and then the local authority pays. Adult children can't be held responsible for paying for their parents' care costs. If you're thinking that you could pay because your mum refuses to, that gets difficult as she or your dad will need to agree to the carers coming in. But I would still follow the advice above about requesting a care assessment. Mention the issue about him being dependent on your mum and it being an emergency if anything happens to her.

Unfortunately with situations like this, it often takes an emergency for people to accept that they need help. You may end up having to wait till then.

I have raised safeguards with local adult social care about them over the past few years as mum has struggled with alcohol- binges and then ok for months then binge. It has been extremely stressful for me (selfish, I know) and everything kicked off at the start of the first lockdown. Mum is ok at the moment and was ok at Xmas which I was thankful for (can be a trigger for her). Last time social care told me they couldn't intervene or do anything because mum had capacity and would not allow care assessment or agree to speak to them. I'm not allowed a house key and try not to upset her so she doesn't drink. I'm dreading the emergency situation.

You're right to be concerned but I think all that you can do is be ready for when the emergency comes and it sounds as though it will come.

Unfortunately it's an all too common story that older people fail to plan, even when one or both of them are clearly unwell with a progressive disease and help only comes when it's an emergency.

Look after yourself OP have a think about how much or how Lotte you're willing to do to sustain them living like this.

You might get some.support in the Elderly Parents section. It's a bit busier than this section and there is usually good advice and lots of MNers who are going through similar

There are emergency cover schemes available to carers. You DM would need to register as a carer, and be assessed and approved as eligible for the scheme - this is not the same as having a care needs or social services assessment. The schemes provide free emergency care for 48 hours if she become incapacitated, goes into hospital etc. so just about long enough for you to contact and set up private care agencies, care homes/respite. You should be able to be sign posted to services in her area through the carers trust or AgeUk. Do you have POA for your dad?

i've experienced some of the same issues and i would say that the best advice was to make sure that i had a front door key and to take my grandads car keys away and replace them with old car keys in case he decided to pop out in the car.

The county my parents lived in had an emergency carers scheme which was excellent. You signed up for it, were issued with a card that would tell anyone if they had an accident that they were a carer and had a phone number to call, then they would organise carers for free for up to 72 hours.
When dad ended up in hospital, this resulted in carers three times (I think), then once mum had been deemed unable to be left, same day admission to respite care on a couple of occasions.
Dad was much more amenable to this as a I framed it as 'if you had an accident I need mum to be safe while still being able to help you and its free'

Does dad have capacity, has HD been formally assessed. Are you the only one with poa, is it for health and also finances. If you're sole pia you have every right to know what plans may be in place for any emergencies. Your mum cannot refuse a care needs assessment for dad, they also need a keysafe. As poa I would contact adult social services safeguarding, not allowing him assessments which could benefit him is abuse.

I would also let his GP know, they may have a frailty unit at the practice and start introducing yourself to local care agencies, do you have financial poa too.

Ah so that makes things more difficult @Peachycat01 and sorry to hear this. Do Social Care know about the alcohol issues when you raised safeguarding concerns? They have a legal duty to review any situation where there maybe safeguarding concerns. And actually, this isn't about your Mum's capacity, it is your Dad's. I would speak to them again and ask them to explain what they are doing to support your Dad and point out they need to be working with you as a family.

In reality though, if your parents are still assessed as having capacity and refuse there isn't a whole lot more you can do until the crisis arises. So ask the social care team for their emergency number/duty desk for when it occurs. And make sure you back up everything with an email.

Thank you all for your messages and wisdom. I have POA for dad but unsure what it is in - mum got me to sign a form and just said it was POA.

I have spoken to adult social care in their area at least three times and told them dad is being cared for by mum who has alcoholism. They have told me they cannot help if she refuses to engage with them.

I will read through all your responses again and go through all the points to see what can be actioned and hopefully make things a bit safer for all.

When a POA application goes in, you should then get a letter from the Office of the Public Guardian confirming what it covers and asking if you object or have second thoughts. If you haven't had this, I'm afraid you need to check to see if your mum has submitted the application. It does take a bit of effort as you have to name an attorney, a back up who can step in if your attorney is unable to do it, and also get it witnessed to show your dad isn't being coerced.

The problem anyone who isn't self-funded will have is the inevitable time delay. If you want SS funding, you can't put in place private care (or admit to doing it yourself), because SS will only find where there's a need not a want. If someone else is already providing care, then there isn't a need for SS to provide it. It doesn't matter that the relative paying for/providing care wants to stop. SS won't step in until the care has stopped. This inevitably means some suffering on the part of the neglected sick person until the SS assessment has taken place and care has been arranged.

All this means that realistically OP, unless your dad can self-fund or unless you want to go provide care or pay for care, your dad is going to end up in hospital through neglect and then you'll have to ensure he isn't discharged without a care package in place. At best you'd have to take all your annual leave and then some unpaid leave (due to the amount of time it all takes) to go up there, be his carer while waiting for SS assessment and care package to be arranged, because you don't live there and have a job/home/life miles away they'd believe you if you said you're going to stop caring from X date.

Do you have health and financial POA or only one of them? If you have health POA you can insist his medical people keep you in the loop with what's going on with him. Not your mum though, if she has capacity then it's upto her what she shares with you, even if you have health POA for her it doesn't take effect until she loses capacity.

It doesn't sound like a POA has been registered if you haven't received letters or activation codes. If you do, you need to know whether it's for health or financial, you should receive separate letters are codes for each. Assuming your mother also has POA for your father, you also need to know if decision have to be made jointly or can be made separately.

Even without her referral you could make a list of emergency care agencies, respite homes etc in their area, ready to do should you suddenly need to ring round. And find out about any emergency schemes in the area. You can contact Age UK and dementia charities, they have a wealth of information you can access without needing to involve you mother.

If you feel she cannot care for him properly, and social services dismiss you because she won't engage, you can make an adult safeguarding referral - however this referral can only be made if you can stipulate your father is unsafe in some way. Is he at risk of fall? Is he receiving any prescribed medications correctly? Is he eating/drinking safely? Are his hygiene needs met?

You can prepare a contingency plan. Try and fill out as much detail as possible. I have one which I keep by the front door. Your mother probably wouldn't countenance having it in their house, but if you have it, it will give a starting point. https://carers.org/downloads/carer-contingency-campaign-pack-reportlr.pdf

https://www.carersuk.org/help-and-advice/practical-support/creating-a-contingency-plan/

To reassure you a little OP, I work for the ambulance service and if we attended your Mum in an emergency, no way would we leave your Dad alone. If very urgent, we'd take Dad to hospital with us so he was safe but if we had more time we'd call crisis response to send out an emergency carer.

Mum is ok at the moment and was ok at Xmas which I was thankful for (can be a trigger for her). Last time social care told me they couldn't intervene or do anything because mum had capacity and would not allow care assessment or agree to speak to them.

This is a taste of the run around, scheming and lying you can expect from SS, who'll do anything to get out of paying for anything. They've neatly side-stepped the issue of your dad's care needs by latching onto your comments about mum's alcoholism and making it all about that. Their response is appropriate if you were asking about care for your mum, but you're not, you're asking about care for your dad. So what they told you is irrelevant.

However, if your dad has a care needs assessment and your mum says she's happy to care for him, then they'll believe her and that she's capable and they'll say he doesn't need care from SS.

So you need to be there at this assessment, you need to tell them your mum isn't capable due to her frequent binges (else they'll say, let us know when circumstances change but at the moment she's capable. If you say the binges are few and far between.). You're going to have to expose your mum's incompetence (and inevitably ruin your relationship with her in the process), in order to get help for your dad. Being an alcoholic or binge drinker isn't enough, it's her level of functioning that determines whether mum is a suitable carer for dad.

I know all this is hard OP. One thing though, how long has mum had an alcohol problem? Did dad know (before dementia)? Because if he did and chose to remain married to and living with her, then he by default chose this situation of her being his carer too, however incompetent she is under the influence of alcohol. You need to mentally detach from your parents decisions and lifestyle choices, past and present. Don't feel obligated to step in to fix problems of their own making. Apart from anything else it's fighting a losing battle and so is a complete waste of your time that will achieve nothing other than to harm your own health.

If the alcoholism is new, perhaps as a way if coping with the dementia, then I have a bit more sympathy. But the facts remain you can't help someone who won't help themselves. If mum is neglecting (by being drunk and incapable and unable to provide effective care) or abusing dad (by denying him assistance from elsewhere or financial abuse using his money for her alcohol etc) that's a safeguarding issue. There's no work-around, you have to drop your mum in it, including with police if necessary (for evidence, so it's not your word against hers) to get care for your dad.

Bless you @AnotherVice - once the paramedics came out to my dad and while in theory they could've solved the acute problem and gone away, they picked up how desperate I was for him to get help, asked some leading questions and said they were taking him in. I know you are all under massive pressure and just wanted to say I was so grateful for your colleagues' kindness on that day.

You need to check if you have poa, the opg would have sent you authorisation if it was registered. Does dad have a formal dementia diagnosis?