Questions about Live-in care funding

Idpullthecurtain

Has anyone been through a similar experience?  Maybe you could offer some advice?

Short story Mum needs 24hr Care, she hasnt been discharged from Hospital yet.  Have been exploring Nursing Homes.  Shes bed bound, so toileting and washing is a main factor.

I have recently started exploring taking her back to her house and using Live-In care.  The Gov does provide contributions if she is below financial threshold for assessment (£24k)  She is way below that so according to Gov she is entitled to some financial support.

I am just wondering what we can expect?  How much contribution is possible/likely, I have no idea if it could be 20% or 80%.  Does anyone have similar experiences?

(its possible Mum may be eligible for Continuing Healthcare, and I hope she is, but she may not get it)

TIA

gm0

Obviously it depends on the level of need.  CHC is a unicorn.  And normally deployed to pay care home fees for a subset of the sickest.  A short stay (terminal) family member got it.  A long stay family member did not.  They approve a few in this case postumously.  Cost known.  Perfect.  But the medical lottery about what counts and winning on ALL the subjectively graded criteria - just miss one and you are out. Multiple levels of review.  A budget to fit into.  A racket as well as filtering limited resource to greatest need.  

NHS nursing top up paid to the care home is all you generally get.  Or part of the carer visits to home paid for (with a top up self funded and paid to the LA).

Live in carer done properly with cover/shifts - 24/7 is expensive.  A few can afford it doing it properly by UK employment.  LAs don't typically fund it.  They want you in a regulated care setting, with others, with the full CQC shift system.  If that's what you clinically need and for daily support.  To opt out - you need to sort it out yourself.  Not an option they will be encouraging or stepping into funding.

There are people doing more casual informal things with live in carers. Where costs are lower and shift coverage/sick/holiday cover and much else goes away (along with some of the cost). Making things emergency prone and difficult at times.  And of course this is off the books employment with all that entails.  And the social are not particularly getting involved with that.  Nelsonian co-existence with community care visits.

Visits.  It is possible (paying top ups to LA) to have multiple care visits daily to live at home.  On a care plan. But this is not a 100% reliable service. For the bed bound.  It doesn't do the job really.  On its own.

Reality is of casual employment and different people showing up at different times.  The more remote you are - the less contingency to a staff infection/illness/other absence - but the more stable the workforce may turn out to be.  Workforce turnover is high in cities.  Never the same face for long.  Day to day.  It's not malicious - just some poor person trying to cover the full visit list based on this weeks absences, illness, resignations and necessarily swapping people around to get the job done (or close to).

A family member working on co-ordinating and filling in is needed. 7 days a week to make it work (most) of the time.  Unless you live and work next door - this won't be timed visits.  Normally the spouse per in sickness and in health. Occasionally the children.  Many people don't want their kids to take this on and this is a trigger for emotionally accepting the time has come to move to a care setting e.g. loss of spouse.

The move from hospital to care home will often improve basic nursing. Turning, changing etc. which can be diabolic in acute hospitals now.  A whole topic of itself.  Whatever the nurses are keying at the station computer.  It's not getting patients turned to avoid bed sores.  Obviously this depends on finding a well run care home.  

Comfort and washing and lifting and changing isn't possible if only one carer shows up on a given shift so things sometimes just don't happen - until tomorrow.  Calling the helpline about a missing last minute shift doesn't magic up a carer to replace one who vanished on the day.  It's just stressful.  If there is a pattern of poor performance.  Then the LA need to take names and use a different provider.  But it is in the nature of the the thing that an emergency situation will arise eventually.  Spare capacity is finite.

Training the resident (or attending daily) family member on hoists and such (safety training to be allowed to participate) is helpful also

It is very hard making it work with visits. With resident family member. 
Many people do it anyway - as they prefer being at home *as long as possible* despite the compromises.  A family member did it for five years.  I joined in for a month.  And was awed by their stamina.  It's relentless.

I would not remotely suggest it is sensible to do visits only without live in family member.  

Most GPs have signposting on carer support which can be helpful to get educated on it.

Brie

If she is completely bed bound then personally I would say that being at home is not a good option for her.  If she is insisting then please don't allow it until there's been a full health assessment done on the home and all the equipment required is provided.  This will include ramps, bed lift, likely a different bed (hospital style), wheelchair, commode, over bed table, full accessible wet room possibly.   A care home will have all of this and the staff available and trained to deal with it all. 

The care support normally available from a local council will, at most, include 4 visits a day, possibly just 1 or maybe 2 individuals.  Visits will likely be about 15 minutes and timed when convenient for the carers rather than mom.  So if she needs to the loo during the 23 hours of the day when no one is there then that's unfortunate.  Visits tend to be timed to cover dressing in the morning, perhaps just sitting her up in bed and giving her breakfast, a stop mid day for lunch, another for dinner and then putting to bed.  There's no time to discuss the weather or what she did when she was 15.   My uncle had this level of care for a few years before his death at 103 - but he was happy to be on his own as long as there was sports on TV for him to watch.  

My MiL wasn't bed bound when we all moved in together but she got progressively less mobile over 5 years.  Our caring solution was to hire a company that provided generally the same carer who came each week for 3 hours.  They initially would ensure she was up and dressed and had breakfast, then do some cleaning, change sheets etc and then just sit and chat.  Early on it was not easy but possible to get her in and out of cars and into a wheelchair so the carers could take her to the garden centre and sit and have a coffee.  Eventually it was enough that, after helping her in the shower, they sat with her and heard the same recollections about her first job and how much black marketeering her mom did during WW2.  

MiL had 2 times at care homes.  The first was really marvellous, getting her to chat to everyone, refusing to let her just sit about, got her more mobile, brought her ice creams on hot days.  The second was more basic as she was, at that point, mostly bedbound but the staff still managed to spend time with her, make sure the radio was playing the music she liked, ensured that she actually ate her dinner.  In both instances these were care homes chosen by the LA but ones that we checked out prior to her being moved to ensure we were happy with both the location (easy for us to visit) and the quality of the place.  

I know this doesn't answer a lot of your questions.  We were the live in care for MiL and it was relentless.  If you are hiring live in care you will need to be aware of them having the right to not be there 24/7, that they will be (I assume) entitled to time off, holidays, sick days etc as they are employees.  If mom's home is big enough and she is well enough maybe you just need someone to be living at the same address in case of emergencies while the LA providers the bodily care assistance 4 times a day. 

I have no direct experience of this but I do know there are organisations that help set up "home shares" where someone, normally elderly, has someone young move in, rent free normally, but who might cook dinner or do the gardening, light cleaning.  And chat.  A quick google threw up this organisation which will give you a better idea of what I'm talking about.    Share My Home | The affordable alternative to live-in support

Savvy_Sue

It is, as others have said, relentless to care for someone in their own home, especially once they are less mobile. 

One advantage of a good care home is that there will be more human contact.

MiL is in a care home. She's at the end of a corridor, but anyone who makes it that far pops in to see she's OK (even if they were originally doing something else).

Her original neighbour was mobile, so would bring all the gossip.

At home, she'd have had her son, but he was still working, and maybe one visitor every couple of days, plus carers. Far less stimulation. 

elsien

@Brie, it’s no use saying “please don’t allow it” if the person has capacity. Because that is not anyone else’s decision to make, however much they think it’s a terrible idea. And fully accessible wet room certainly isn’t going to happen, at least not in the short term. If someone is in bed all the time they will simply be changed and bathed in bed. 

But to go back to the original question about carers, the local authority would have to do a needs assessment first. And then in planning the level of care they are legally allowed to take resources into account if they can show that their alternatives that will meet her needs and would still be in her best interests. Most will not fund more than 4 visits a day and not much in the way of support  at night. No-one can give you a percentage figure as to what a local authority might contribute - what they would do would follow from the needs assessment.

If the hospital is desperate to get their bed back, they may suggest a short term discharge to assess bed in a care home (names vary between areas) and the CHC assessment would be carried out there within 4 to 6 weeks. 

If your mum’s needs are pretty much social care ones such as washing, eating and continence  she will not qualify for full CHC funding. 

Keep_pedalling

I think it highly unlikely that live in carers would be funded where there is a residential care alternative. The main problem with someone who is totally bed bound is that the home would also need major adaptions that it might not be suitable for. Apart from a wet room, a hoist to enable the carers to move her to and from bed safely may be needed. 

Brie

@elsien - my point was don't allow it until there's been a full assessment done.  Yes of course a fully competent individual might insist but if the OP is there as a carer even part time she should ensure that the assessment notes what provisions are in place.  Council and the NHS have a obligation to ensure they safeguard individuals.