Talk me through options here…

[Sproutingbird]

Hi, wondering if anyone can talk me through options in the following scenarios. Background info: Dad caring for Mum who has mid stage dementia and cannot live alone. He currently does everything for her but they both refuse any outside help. Low savings, no spare cash each month but they own their own property jointly. I do not have financial means to contribute to their care.

Should anything happen to Dad so that he was incapacitated, possibly in hospital, (but hopefully intending to come out of hospital at some point) what happens?

Scenario 1: I find Mum a place in a private care home. Parents could possibly fund a few weeks but after that, the money would run out. If Dad was still incapacitated at this point (but wanting to eventually come home) what happens?

Scenario 2: I go through the local authority to find a care home place for Mum. But how long could this process last, and what happens to Mum in the mean time? I mean are we talking a couple of days or several months to get this sorted?

Thanks in advance and I’m sorry if you are in a position to advise about this, as it is a position that nobody wants to be in. Just to add, in either of the above situations, if it were found that Mum actually needed to stay permanently, what happens then?

Not really in a position to advise but wanted to join this thread.
Slightly different situation as my MIL has dementia but lives alone. She also can't do anything for herself and so we fund carers 5x a day for various visits. Hour in the morning - bath & dress. Pop in visit, long lunch visit, pop in visit, evening longer visit. She's incontinent now so has to be changed regularly.

We've recent started having discussions about looking at homes.

She's just above the threshold at the moment (with re to savings) but probably by only 10-20k which will disappear quickly once in a care home.

We've recently arranged day centre visits to start soon which is three times a week but they would do 5x a week if needed. This is 9-5. This was very quick to arrange / could be done in a matter of days. Is that an option for you where then someone stays overnight with her?

When we originally contacted the care agency they could start pretty much next day. So perhaps a mix of care & day centre short term?

As for care homes, the only advice I can give is to look for somewhere that takes gov funded as well as private funding. We've been advised that should MIL move into one now, she'd pay until under the threshold (about 23k savings), and then it would be state funded. However, she owns her own house so at the point of moving she has to sell her house and then once that has happened she obviously needs to pay for care again until that money also runs out.

I don't know what you do if the house is jointly owned by 2 people, but I think I've read somewhere that care costs wouldn't be required to be covered if one person is still living in the house until they also move or die and the house is sold. At that point care costs are re-couped by the state.

Not much help I'm afraid but hopefully someone will be along shortly.

Without savings to pay for care you’re going to need to engage with adult social services in your area. They will need to assess and work out care needs. If your dad needs go into hospital you’d need to make sure they know you can’t fill the gap and that carers will be needed. If social services are already aware of your mum this is likely to be an easier process.

Thank you Summerloving. I think in my parents case, they are already well under the threshold, but could possibly fund a couple of weeks privately in a home before the money literally runs out altogether and they would go overdrawn. It’s tough all round and I am sorry about your situation. If Dad weren’t in the house, Mum would be left without care at all currently as they have refused any outside help so far while Dad is around to do stuff.

Thanks walkingwoods. Mum can’t be left alone so residential would be needed, but if engaging with social services, I understand that this could take a very long time (months? Weeks?) to sort out… so any idea how long this might be and what Mum does while this is being sorted?

My mum and dad were in this situation although they (after crisis after crisis) did have a private carer, but mum couldn't be left overnight or for long periods by the time this kicked in.
You need to get an adult ss assessment moving now, even if your parents won't accept help you need ss to see that they need it. Then ask about emergency carers schemes. My parents were in Oxfordshire and there was a scheme for the carer to have a card which said they were a carer and if incapacitated to call the number. Just this in itself made dad realise people took this role seriously.
The first time dad was in hospital and I needed to invoke the emergency carer thing, ss had 4 care visits a day going from that evening and it went on for a couple of weeks (free of charge) until dad was well enough to care again. Once mum couldn't be left at night and dad had been admitted, they found her a care home place the same day and she stayed for 2 weeks, then carers at home. Dad hated this, but she actually liked it. After that they arranged it a few times, including the day dad died and mum could have stayed at that home or we would then have had longer to find a more convenient home as obv you are stuck with what is available right there and then that meets your parents needs.

The part that took a long time was the initial assessment, but it was actually all very easy to manage after that. I had to be super firm with my dad on the need for it all though, and though he absolutely hated the idea of my mum in a home, his health was very frail and accepting all this got him his wish to stay at home together till the end.

I don't have direct experience but have been researching recently for my own mum.

Care Assessment: ask the council to do one now, before your parents are in a crisis situation. Probably won't happen immediately - my council said 8 weeks for an appointment. As your parents have low savings they'll probably become reliant on local authority funding at some point, so the council will need to become involved anyway.

I read somewhere that carers can register somewhere as a carer of someone who is dependent on them, so that if something happens to the carer, eg accident, it will be known that there is a vulnerable person in need of assistance. Might be linked to the carer having a formal Carer Assessment.

I've found these websites useful:

https://www.dementiauk.org/

https://www.alzheimers.org.uk/
(has a talk forum like Mumsnet which is excellent and has people dealing with all types of dementia, not just Alzheimer's)

https://carers.org/caring-for-someone-with-dementia/caring-for-someone-with-dementia

This is useful, thank you. They have not had any kind of needs assessment or carers assessment as they are adamant they don’t want strangers coming onto the house to do things. But if I put it to them that they don’t need to accept any help, but that the assessment is to make social services aware of them and so that a back up was available should Dad be incapacitated, I wonder if they would accept that?

Its one of those times where you have to parent your parents and be firm I'm afraid. I found sometimes I could make up a friend whose parents had been in a bad situation because they hadn't sorted something out, and it was playing on my mind so of course I didn't think <bad thing> would happen to them, but just for peace of mind, lets get you signed up and then I can stop worrying. Feel free for me to 'be your friend' trying to sort care for mum 80 miles away with a FT job and a 6 year old plus dad in hospital as well if it helps you tell the story

Have you got LPA OP? X

I have LPOA for both parents, health and finances, and they have it for each other too.

Social services can move quickly especially when it’s an emergency. But they need to be aware of your mum and her needs. My dad went into hospital as an emergency after a fall. Prior to that he had point blank refused all external involvement. The stay in hospital triggered social services involvement and he’s now back home with carers visiting 4x daily. Although horrific at the time it was the best thing that could have happened. He wasn’t coping on his own at all and now has regular meals / medication and is so much better physically, sadly dementia worse following hospital stay. Social services were very good when they got involved. Organising emergency respite care and carers to home whilst we sorted the plan going forward. He is currently self funding but financial assessment has been completed ready for when his funds start falling close to threshold.

Looking back I wish we had engaged social services / GP earlier even to simply make them aware. It would have made the process much easier if we had.

I've been in this situation before and am facing it again now. Last time, it was an unplanned crisis (caring partner hit by a car and temporarily hospitalised). Family took emergency leave to cover the first week or so, then arranged live-in care for a few weeks - privately funded. It took three or four days to actually set up.

This time it's a bit different - my DP are in the situation you describe. DF is pretty fit and well, but the situation is precarious - he had a fall recently which really shook him (though thankfully did no lasting damage), and I'm aware that anything could happen at any time, and mum with dementia would be totally unable to cope. And there are various issues as dad gets older - eg I'm pretty confident that mum's taking her medication unreliably, and dad seems either unable or willing to take control of that - I think he just gets aggro from mum if he tries to interfere. Like yours, my DP utterly refuse outside help, and I'm pretty certain would refuse to engage with a SS assessment. I'm currently working on getting them to add me as a contact with their GP, so I can at least talk to her, but don't know if they'll agree.

This happened to me - though it was 17 years ago. My mum had Alzheimer’s and my dad was her carer. He became very unwell virtually overnight and was diagnosed with pancreatic cancer. He had to go straight into hospital. At that point, they had been staying with my aunt for a few days whilst repairs were taking place to their boiler. This all happened on a Saturday. I called social services that morning and was given the option of respite care for my mum, with a choice of two homes, subject to an assessment. This took place a few days later and my mum was admitted to one of the homes. It took about a week. When I look back, I don’t know how this happened so quickly, as I don’t think that social services had any prior knowledge of my mum - but maybe they contacted her GP. I think that an assessment was done of her ability to pay for the care, as I remember receiving a bill.

Worst case scenario your mum could be admitted to hospital as a social case until social services find a care home.
We had this problem with ILs. In the end DH spoke with social services to get a list of potential SS funded homes and visited them so that when the inevitable happened (FIL had terminal cancer, MIL was severely disabled after a stroke and couldn't be left) we were ready to go. We were lucky that the preferred home had a place available when FIL was admitted with unstable diabetes as a result of intolerance of painkillers. That meant family only had to cover a couple of days for admin by the home and SS.