What happens when the money runs out?

[xrayted]

DM (93) and DF (97) both in a nursing home for the last year due to deteriorating health conditions and lack of mobility after various medical crises (mostly falls and unsafe at home). They are both medically fit other than the frailty dementia and mobility issues. Rooms adjacent to each other and well settled. The total monthly bill is around £12,000. They have decent savings but due to my father’s profession they never owned a house. We are increasingly worried about what will happen after the money runs out .. we were originally told no worries and that the LA would step in but we have calculated that after the LA pays the maximum amount of around £800 pw pp and then subtract pension income and AA we will be left with a shortfall of £6,000 a month for the two. This is an impossible situation! Does anyone have any experience of what happens when the money runs out? We are panicking and only see two options: moving them to an affordable home which might be awful and sub standard or taking them into our home which would mean me giving up work. Would appreciate any thoughts.

Don't take them into your own home is my first thought. The level of care required would likely finish you off before them.

The local authority will try to negotiate what they will pay with the nursing home. If they won't pay enough then they will ask if relatives are willing to top up or your parents will have to move to a cheaper place. The local authority often pays less than private clients for the same home.

They would need to move to a home that's within the council's budget - but I wouldn't take them into your house, I can't imagine you trying to provide care for both your parents on your own

If there is no one in the family able to agree to pay a third party top up to cover the shortfall, the LA may look to moving them to a cheaper nursing home following a Care Act (2014) assessment of their needs.
Are you sure they are in a nursing home and not a residential care home?
If in a nursing home, do they have nursing needs or could their needs be met in a residential care home as they cost less?

I agree don't try to move your parents home. Sadly dementia gets worse not better so you would have 24 hour care needs - confusion /behaviour/soiling at all hours x 2. Possibly eventually two bedridden parents needing every spot of care provided due to them being immobile. That's too much for one person to bear. A nursing home has a whole team of people to provide that care and they still sometimes struggle with people's needs.

How long will their savings last?

Recent experience of this - I think it is carehome/nursing home specific. My experience was that the carehome reduced their weekly fee to match the council rate (after asking family if they could top up). Not sure if this is common or not - but discussion with the home as they will have lots of experience with this.

also I think the council don’t pay the full £800 - the resident uses their pension etc and the council tops it up to £800 if that makes sense.

I would keep in contact with both the home and the council - they are in my experience pretty helpful

Don't panic just yet! Start a dialogue with the LA about the future. How funding works etc, you might be pleasantly surprised. My own experiences with them were nothing short of supportive. If your parents have been at the nursing home for a few years the LA might not want to move them. You say nursing home but do you mean care home if they have no medical needs? Are you paying for nursing when not needed?

I know having them live with you is onerous but with no savings they could be assessed to needing carers 4 times a day which may work out cheaper for the LA and might also enable you to continue working in some capacity. I know this sounds horrible but due to the age of your parents it will not be a long term thing.
Hope you find a solution that suits.

Wow such useful comments. Kind of confirms what I had researched. They are definitely in a nursing home and both have the extra NHS nursing subsidy along with the higher rate of AA. You are right about taking the care on at home. They are both doubly incontinent and cannot walk so their care is full on. DM had a fall a couple of weeks ago in her room and ended up with a fractured NOF needing another hospital stay and operation and it is unlikely she will ever regain her mobility (hip replacement and Pelvic fracture due to falls over the last 3 years). We originally thought the LA would provide the £800 supplement and that the shortfall would be minimal and we could manage to fund the top up of around £500 per month, but now realise that their income (ie pension etc) would be deducted - leaving a massive shortfall of £6,000. We have an appointment to talk with an advisor on Tuesday and will then speak to the care home manager. We had them at our home for 6 months during covid lockdown and they were both much fitter and more mobile then but it was a nightmare. We had “poo-gate” issues (don’t ask) and the experience was very draining. Now they cannot dress or toilet independently and need 24/7 care. My DM has regular bouts of diarrhea which is challenging and unpredictable. There is about 6 months left in their savings but we don’t want to be at a point where we have zero left in the pot and are forced to move them. The move itself would be very traumatic at that stage

Thank you for all your support - really helpful to see it all written down to get perspective

Yes, get the lines of communication open now.
Even if they have to move homes, make sure you visit a variety of LA approved ones. Just because the price is cheaper it doesn't mean the care is sub-standard, it normally means more facilities (that your parents can't access anyway).
Another thought on cost cutting - could they share a large room?

Good idea and yes we are considering the option of them sharing a room - there was one available which we originally refused as they tend to have very different routines and my DF, being very deaf can be disruptive and shouty because of this but it may be the only solution :( Also he watches TV all day and my DM hates it so there would have to be compromises!

Start talking to SS now, work out how long their savings will last (taking them down to approx £23k each), so you have an idea when extra funding will be needed.

SS will negotiate with the home, so would be paying less than the going rate for rooms. They might be asked to move into a smaller cheaper room. It's possible SS might move them somewhere cheaper but that depends if somewhere cheaper exists.

Do not think about offering to have them at home! And be very wary of offering to pay a top up unless you can genuinely afford to continue that without causing detriment to your own home, pension etc. It's easy to think it could not be for long but what happens if you commit and it ends up being ten years?

www.ageuk.org.uk/information-advice/care/paying-for-care/paying-for-a-care-home/

You should speak to social services now if they only have 6 months left before they run out of money. They will be able to guide you through the process. Do not offer to take them home or to a cheaper care home. The money they can keep will depend on where in the uk you are, I think it’s 23k in England but it’s higher in the other countries.

Thank you that is amazing advice. We have gone from being sick to our stomachs all weekend to at least the makings of a plan of action. Nobody warns you of these things and there is an element of denial when you have spent years of trying to support them in their own home and gradually becoming more stressed by the trips to A&E and midnight phone calls. Finally we had them in a safe environment. But with their prices increasing by 10% this month adding another £1200 to the monthly bill there is no way we could cope with paying the top up. With the current numbers the top up alone is more than our combined salaries! We have already supplemented their care over the years as much as possible but this is beyond anything reasonable. And although my first reaction was to bring them into our home, realistically I know it would be a nightmare what with double incontinence issues and constant falls, and yes even at their advanced age, we could be talking another 5, even 10 years. It is a horrible way to think but it is unavoidable.
Anyway we have an appointment with a finance guy to sort out hard facts and numbers on Tuesday which will lead to a meeting with the care home manager and hopefully we will liaise the LA people. We have worked out that IF they offer us a reduced room price in a shared room AND the LA steps in for the rest the 23k threshold will fund the top up for a while. I will be 64 this year and unable to think about retiring yet … we really are the ultimate sandwich generation - my GPs died in their 70s but modern medicine has skewed the population so that people are living longer and longer.

We are in the UK, south east and from what I can workout it is £23k threshold. What slightly irks me is that when we had initial discussions with the care home we explicitly asked what happens when the money runs out and they don’t have a house to sell, the manager kind of brushed it off and said that the LA would take over and they had never made anyone leave for lack of funding so we kind of left it, thinking well that discussion may not be necessary … £150 grand down the line we are suddenly having to face some difficult negotiations and decisions. Sending them to a new home seems very cruel if it that is their decision.

Glad you are a little more positive op. I just want to say that all of us who have been through it, we all will have had different experiences with our individual LAs and they do not all have the same rules re funding. Hopefully you will have a good outcome and your parents will be able to stay where they are indefinitely.

Sorry you are in this position OP. Don’t consider having them home. 6mths is a long time in your 90’s, it may be that the situation sorts itself out one way or another…I was beginning to think my relative would outlive me but the end when it came was fairly swift.
The home my relative was in would have taken the SS fees level when the money ran out but by that point they’d been there 8 years and billed approx 400k. Not sure if they'd have been so accommodating to a less long term resident.

Christ - £400k. The mind boggles. And our children are all struggling with getting in the housing ladder and raising their own kids. We kind of assumed that the situation would “sort itself out” before this happened, but you just never know if that will be in 6 months or 6 years. This week will be very interesting and hopefully we can get our peace of mind back. I think if we can manage to negotiate smaller/shared room then we can stretch the budget a little further. The process is exhausting!

I would say that suggesting they have a shared room is a worse option that have them move care homes TBH. Rather than treat the parents as a package, they need to be treated as individuals. So in the discussions with the Manager / LA they need to carry out independent financial assessments - for example, it may be that one parent has a greater income than the other in terms of pension so the LA would have to fund a smaller amount. LAs will look at avoiding moving residents unless absolutely necessary. Under no circumstances should you offer to pay a top up unless you can absolutely afford to lose that money! Care homes generally charge self funders a higher rate that they charge the LA.
In your calculations, you need to remember that any Attendance Allowance they receive as self funders will stop as soon as they become partial funders.

This is why it is possible that they will waive the excess - they said the same to us and were good for it. It’s a business and if they have spare rooms they get money for them

And don’t go in offering a shared room try to keep the current status quo

That would be the dream but the home may prefer a cheaper solution and releasing two more expensive rooms (£1,600 per week) for new residents. But you are right - we will see what they come up with and try to start from a position of keeping the status quo. To be honest, they squabble like cat and dog most of the time - 70 years of marriage and there’s not much magic left…

Give SS and the home the facts and figures and let SS work it out.. they may presure you to move them somewhere less expensive but if they are settled where they are I would be arguing that this would be detrimental to them.

Do not offer a shared room as an option
Do not offer to top up or (whatever you do) to have them with you

This.