How to plan responsibly for parents care

[Soleena]

My mum (80) had a stroke three years ago, can just about walk, mentally is fairly but struggles to do much for herself (dressing, cooking, etc)

My dad (83) is her carer, he helps her dress/get into car/cleans her up if she can’t make it to the loo, does the gardening, fixes things, etc etc! He’s fairly well, but has a weak heart and is not a young 83.

It’s not sustainable for him to keep caring for her. My sibling and I would prefer for them to move to supported living of some sort. They could be more sociable there (their house is pretty but isolated) and my dad wouldn’t be under so much pressure.

My mum is dead set on staying in the family home though, it’s very hard to persuade her to even think about it. But my dad can’t go on like this!

I live 3 hours away and have young kids, my sibling also has little kids and works. We don’t want to care for them, albeit we can be on hand to help occasionally, but they need a new plan for every day.

Mum rejects home-helps, says they are annoying and turn up at the wrong time.

We are at our wits end, my dad is crumbling, I want to force the issue as he can’t go on like this. It doesn’t help that my mum can be aggressive and bullying…

What do we do! Has anyone got experience of this?

They have a £700k house they could sell to fund onward care. They live in the south east and their village is a very expensive area, the nearest retirement village is 7 miles away.

i found some nice retirement flats for £400k, which would leave them £300k in the bank to fund their care, is that a good amount for a private care facility that’s a good standard?

I’d be so grateful for any wisdom or kind words, my sibling and I are really struggling with this

thank you

Paid for carers in her own home first please.

To add. I doubt your parents want to live in a 'retirement flat'. Nor that they might think them 'nice'. That is why they are resistant.
They like their home. With all their possessions they have around them. And no, you would not be able to take them with you. It wouldn't be the same.

The kindest thing is to help them stay in their home for as long as possible.

By the way, just to let you know, retirement flats are notoriously hard to sell. People whose parents have moved into those end up wishing they had not. They find themselves lumbered with service charges etc and unable to sell.

How old are your children ? If your parents are 80 +. They cannot be tiny young. So could you go and see them sometimes ? Perhaps your oldest children could help out around the house too ?

Your parents need paid for carers. Not home helps. It is their money and they need to spend it on themselves. Get a decent company in. Explain it is to help them stay in their home.

I speak with experience. My mother was in her home for as long as she could be. And we encouraged her to spend her money on herself. To have paid for carers visit. We also lived far away and visited her routinely.
It is not easy, but I could see that for her, her life was in her home. Her memories. All her things around her.

Keep your mum and dad in their home for as long as you can.

It sounds as though your mum needs a care assessment. A social worker /occupational therapist can come out to do a needs based assessment for her.
But you have to ask for it to be done.

I agree with this. I worked for an estate agents many years ago and we struggled to sell on retirement flats. They aren’t that nice, functional but not characterful. They were a headache for the offspring who inherited them as service charges remain payable. They can be rented out but do you need that headache?

It sounds like one or both of your parents might need to move into residential care before too long. Let them enjoy their home while they can and find a good micro provider for their care.

Something else I would like to add as unfortunately I have learned the lesson the hard way myself is that whilst your DPs are deemed to have capacity, none of the decisions are owned by you and any planning you and your Dsis make on what your DPs should do are purely hypotheticals. Remember you did not create this situation and you may not be able to resolve it.

What you can do is put your own limits and boundaries about what you will and will not do. It’s good that you and your Dsis seem to be on the same page, keep talking and try and split some of the responsibilities.

Unless you believe your DF is being emotionally abused by your DM, then when he complains to you about her say that he should be saying to DM that he is struggling and they need to get help in. Completing the attendance allowance for DM and putting in carers allowance for your DF are good as gets them on social services radar.

Residential. You're looking at somewhere around £1500 - £2500 per week for an individual. Live-in may be slightly cheaper for a couple, but you need to take into consideration cover for breaks, days off, transport and annual leave.

It's not unfeasible that caring for her will kill your Dad. I struggle in my late 50s looking after elderly parent full time. It's not uncommon for the shit to hit the fan before they will give in and allow help. You need to have the difficult talk with them about how they see the future unfolding.

You can have visiting carers before going into a care home.
Paid for. They can come as often as you wish. Morning, noon and night.

Maybe the mother will accept being told a carer is needed by an external person.

OP I emphasise the retirement flat point - don't do it. There is help available for adjustments to homes eg stair lifts or aids in bathrooms and it's much cheaper to keep people in their own home from a care fee perspective.

But ultimately your dad needs to stop pandering to her, tell your mother he wants to be her husband, not her carer and get carers in.

Honestly, you need to call her out on how she's treating your Dad (if she has capacity to understand). Tell her that he's going to be ill if he carries on being at her beck and call and that something has to change. I used to work in elderly care, and often saw the "carer" partner in a relationship drop down dead first, usually from strain and exhaustion while the person needing the care carried on for years after. The other thing I will add is that residential care may well be the best option here, as having carers in really stressed my Dad out when he was terminally ill (and a lot of them were little more than useless). McCarthy Stone /Similar other companies do half way houses between care homes and independent living, whilst not cheap and tough to sell on they are ideal in that they offer on site care/catering etc. If they've got the budget, I'd look into it.

Yes my dad and mum have carers coming in (had to persuade them over and over again) for about 16 hours per week it's about £1,200 per fortnight. Which seems a lot but it's practically nothing compared to a residential home.

My parents are in Surrey. I reckon if they sold their home the money from the sale would be used up in just over 4 years.

Age UK Surrey have a campaign called 'Planning for your Future', they do in person and online sessions but you don't need to be a resident of Surrey to attend.
Surrey County Council also have a cost of care indicator which may help give you an idea of care costs and uses the average costs for the South East. www.surreycc.gov.uk/carecostindicator

Each and every insight is immensely helpful

I appreciate the alternative view on retirement flats. There’s a retirement place near them that has a smart canteen and indoor pool (looks heavenly to me as a stressed out mum of little kids!) but I think all my mum sees is a loss of dignity, and being hidden away

thank you for the perspectives on the benefits of keeping them in their own home though

..they have started to pay a little for cleaners and a gardener, but I guess intimate care is another level and I get my mums resistance… it’s just that as everyone says, it’s breaking Dad

I can’t move to be nearer, and I don’t want my sis to have to shoulder the burden, she is busy with her own family and work, and emotionally it’s bloody tough handling my mum! We all dance around her to keep her sweet, sadly she has very little perception of how difficult she is

Yes, but the cost soon adds up to the point when live-in or residential becomes a viable alternative. Especially when you consider gaps in care, specifically overnight which is prohibitively expensive.

You could suggest they have one visit a day for a month 'to give dad a break' and then at the end of that they may be used to it and happy to continue.

Get Attendance Allowance request in, your DM should easily qualify from what you have said.

Yes, care home or respite centre

Unfortunately a lot of care homes will only offer respite for a minimum of 28 nights due to all the work, pulling together care plans etc needed....it's as much pre assessment work someone staying 3 days as to 3 months. Whether this is different if you're a private payer though...

I'd push for a social services assessment of need. Parents may well then be assessed for community care charge (max £100 a week) for domiciliary care. If they don't want to use the contracted agency they could pay private or do a mix of both.

My advice is get them known to the 'system' as needs can change quickly. Sadly I see a lot of people have a hospital admission that then leads to a lot of charge rather than it being more planned.

I think you have over looked the issues with these retirement ‘villages’. They often have huge yearly ground rent costs. Carers are extra and limited in what they will do / how many times they will come. Community facilities are underused. If care needs (either due to physical of mental disabilities) get too much they will basically kick you out, they are difficult to sell, you often have to give 10% of the value back to the company and continue to pay all the fees until it sells.
if you mean a residential care home then you get the 24/7 support but you would be looking at around 4k a week for both of them, and again, if their needs become too much in anyway why they get severe dementia, need hoisting etc they can basically kick them out. If they run out of money, and it wouldn’t take long, you either top up the fees yourself or they move to a cheaper care home funded fully by the council.
it sounds like you are beginning to outsource stuff such as cleaning and gardening which is great. What about shopping? Could you help arrange online delivery for them? Maybe see if you can get one care call in the morning to start with to help with washing and dressing? Let your mum build up a relationship with the carers slowly. But your dad will have to be firm that he can’t help her wash and dressing in the morning, and that she needs to wait for the carers, even if that means sitting in a dressing gown for a few hours. Late morning calls might be better than 7am ones depending upon their routine?
but most importantly make sure you or your sister have LPOA for both finances and health and well-being.