Any advice on how to start planning supported living for elderly parents?

[LongGinShortTonic]

I’d really appreciate some advice on next steps.

DF is 87 and DM is 82. They live 3.5 hours from me, and my sibling lives in northern mainland Europe. They grew up there, lots of roots and friends. they downsized into a frankly ridiculous house (steps everywhere, even on the ground floor) house in a village four years ago which has a bus, shops, church etc and are very happy there.

DF has had increasing health problems for the past 2 years and recently had two TIAs. He’s got a catheter and waiting for a prostate op which keeps being delayed. he struggles with walking and left to his own devices would quite happily sit on his iPad all day. He can walk with his walker or a stick but not far.

mum does everything, and she’s struggling, but won’t admit it. There’s some cognitive issues but nothing major, although she does have arthritis in both knees and when I got there this weekend she was struggling stand up, Dad was trying to help but couldn’t, it was heartbreaking. They have no help in the house and if this was taken away from her she would struggle. My sibling or I go every three weeks to help for a couple of days but it’s not enough.

We are one shuffling step away from a crisis, and I’d much rather they be in control of what happens next. I spoke to my sibling last night and they suggested it was time ‘dad went somewhere, the only question is if Mum goes with him’. It was a hard and businesslike way to put it, but he’s right.

They’ve been married 60 years, I don’t think they’d want to be separated. I ended up in tears.

They don’t need carers, I don’t think, they need to be somewhere with help available if needed and support that can be ramped up as necessary. They want to stay in the house, but without either of us closer that’s going to quickly become very hard.

any ideas or suggestions as we start to navigate this? The conversation might start but it’ll take time to process and to find the right place and we’d rather be informed and them be in control rather than being lurched into a crisis and having to make decisions for them.

From our experience. Elderly parents still living at home, with help of carers (and a good neighbour)

Contact adult social services. They can provide help and advice, put rails in, provide equipment such as walking frames etc

Attendance allowance - apply for this. It’s not means tested. It’s a horrible form to fill in, but fill it in on a worst case scenario.

You say they don’t need carers, but we found that has helped my parents (86 and 91) stay in their house. My parents found it difficult to have people coming in at first, but have got used to it now. Make it clear what you want them to do - housework, cooking meals etc.

Laundry service - we use a laundry service once a week that collect the laundry , wash it and return it.

Lifeline - if your parents are at risk from falling, consider a lifeline. My dm prefers a watch one then a pendant one.

Get Power of attorneys in place.

Residential homes are expensive, very expensive.

@Silverbirchleaf has all the main things. You could add: cleaner, gardener, shopping delivery/meals on wheels.

Age UK are also an excellent source of advice and support
https://www.ageuk.org.uk/information-advice/

Definitely apply for attendance allowance. As pp said, the form is a awful (as someone who deals with HMRC forms on a daily basis, this is much worse) but our local Citizens Advice as an 'older persons champion' with loads of experience of completing then and he filled one in with me over the phone for mum then just posted it to us to be signed.
You've mentioned some cognitive declined with your mum. I'd keep a close eye on this. My mum was in a similar position towards the end of Dad's life. When he passed it became clear how much he was 'covering' for her and they were hiding/in denial about her actual cognitive decline. From looking in to this more, it seems to be quite common for elderly couples to do this. With the benefit of hindsight I think Dad also played down his own physical care needs to avoid regular carers going in and noticing what was really happening.
Re accommodation- do they have friends/social contacts/support network etc in their village? If they do, I'd look at ways to keep them there (with carers). If they don't I would definitely look at assisted living etc. Speaking frankly, as well as planning for their care needs together I think you need to consider how one of them will manage when the other passes. Having social contacts and a support network close by will be vital. If you can arrange things to build this now things will be much easier when that happens. When my Dad passed Mum was very isolated and although she hates being alone it's very difficult to persuade her to join social groups etc which makes it lonely for her and puts a lot of pressure on the few family members left. It would have been much easier if she and Dad had kept up some sort of social life (even if it was just through living in retirement accommodation) so she had some people nearby.

Thank you so much for taking the time to reply, all of you, much appreciated. Laundry service is a great idea. My mum used to be a caterer, there's no way she's giving up cooking! They do go out for dinner once a week and maybe a lunch too, so she's not cooking all the time. I think a deep clean once a quarter would mean mum can stay on top of it the rest of the time - there's nothing she likes more than cleaning, but she's starting to miss things, so this would pick that up. Dad already has a fall alarm, maybe one for Mum too would be a good idea.

Dad would definitely qualify for the Allowance, I didn't know about that, thank you.

We have power of attorney for health and finance in place, and they have wills. They have a really strong support network - people are falling over themselves to help and the phone rings constantly with friends calling to see how they are, suggesting getting together. Thank you also for the link to AGE UK.

If something happens to DM then it's going to have to be residential care for Dad, there's no way he can cope alone.

In terms of how to discuss it with them, I think I'm going to come at it from the angle of 'if you want to stay in the house, lets look at how to make that happen' and also 'let's look at options for when we get to the next stage' rather than stomp all over them with the rather direct route my brother took!

Thank you so much. We could be in this for the long haul, and it's hard from a distance.

I would investigate getting a reliable cleaner/housekeeper who will vacuum, do laundry, pick up groceries and crucially update you with any concerns - they do exist but may call themselves home helps, also seen elderly guardianship services near here too - all aimed at supporting families who are not geographically close. None comes free of course but a lot cheaper than residential care. I’ve done quite a lot of research on this and it seems that there’s both agencies and individual providers filling this niche.

Fantastic, thank you!

I've got a lot of research ahead of me. I feel better already for knowing there are options.

Another thought, microwaveable meals. My parents rely on supermarket microwave meals. My fil used Wiltshire foods. Having a few of them in the fridge or freezer can make cooking easier, but they may not be at that stage yet.

Also internet shopping. My dm tells a family member what they want, and she orders it for them.

Social services assessment first, they may be more accepting of an outsider saying what help is needed.

Can they afford to buy in the sort of help they need? Cooking, cleaning, garden, personal care?

Are they using the village amenities or just like the idea of it?

My mum still lives in the house we grew up in and due to her dementia is past the stage of moving somewhere more practical through choice. We are now looking at whether she needs live in care or has to be somewhere else where care is available.

It’s heart-wrenching. I find her resistance to change is part of her lack of awareness of how bad things are. Carers 3x day were argued against for ages now she is always checking when X or Y is coming next.

Extra care housing!

Mum is still shopping and cooking and cleaning and happy to do so. She would rather die than use a ready meal (unless it's from M&S!) and she is quite happy popping out to the butcher / fish van etc. Yes, they do use the facilities in the village - and they can afford to buy in help. I'm looking into all the suggestions of laundry and gardening and so on. I think a deep clean once a quarter will just keep the pressure off for Mum.

My big fear is that my sibling has gone straight to 'care home' and they're not there yet. He's great, but quite forceful. I think with a walker downstairs that would alleviate a lot of the concern about him falling.

Social services assessment would be laughed out of the room! They're very proud. The GP would be a good call for me to make.

All of this. Excellent advice.

Get carers in. They do need them from what you are saying.

@LongGinShortTonic every person who has been through this has been through this stage. It still needs to happen.

My SIL is blunt as hell she just landed it in on them in spite of their protestations and didn’t pussy foot around it.

Age UK is your friend here - they have info on everything.

It sounds to me as if your brother is the problem here!

Your parents do need to retain choice in their lives and I am sure that staying together is what they would choose. The idea of separating them would lead to two declines I think. If neither are actively suffering from dementia then they have to be free to choose what they wish to do.

All you can do is gather all the information you can and present them with options from which they can choose. Unfortunately you cannot protect them from every danger and they have to be free to take their own risks, as long as they have full info on what is on offer.

Fully fit adults choose to climb mountains and put themselves at risk and that is their choice. Elderly people in possession of their faculties and all information are no different. I know that this leaves family to worry - but I would worry if my son were planning to climb Everest!

It may be that they might make a wrong choice in your eyes but it is their right to do this as long as they are not putting anyone else at risk.

It is very hard I know.

Do you know any other elderly people in the area. We thought the same with my parents, but when they began to talk to other oaps , and found out about what services were available, they were more willing. Also, in some areas, it’s called ‘Elderly Community Services’ etc so not ‘social services’ as such.

I am assuming they are doing online shopping with deliveries as Dad is on his iPad all the time!

They did do online shopping through the pandemic and are all set up with ocado and Morrisons but Mum is very happy to go shopping - it's beyond my Dad but nothing makes my mum happier than making a production out of going to the supermarket!

I have now spoken to my brother again and thanks to you all I was able to have a reasoned and calm conversation with him. I've said the aim is to keep them at home and the messaging needs to be about how we keep them independent. That two walkers, one for the sitting room up the steps and one for the dining room and kitchen, are non negotiable for me - the big risk is Dad falling. He agrees and says to ring the folks and talk to Dad and send him two options and just get him to choose. I have also said he needs a grab rail in the shower and one by the loo. This is all to help him stay at home safely, so needs to happen.

I've called my Dad but they're not answering, probably out terrorising the local roads with Mum's driving (topic for another day) so waiting for him to call back on that.

I have said there is a longer term project for he and I to do about finding out the actions for the next steps so we're ready when the time comes. He was, overall, very supportive and listened to me. He's taken the Allowance application on and will sort out laundry and a weekly cleaner for Mum, so he's helping, it's not all on me.

None of their friends have carers in unless they are seriously ill - one of my relatives had a fairly major stroke the other week and when my parents went to see them, my mother was incandescent that she hadn't 'made an effort' and put her make up on and a 'decent dress seeing as how she was having visitors, and she could have run the hoover round'...

I am googling and following up on all the suggestions, thank you. My physio this morning suggested the NHS trip and fall assessment service, which in my county is called 'Strong and Steady' so something else to look into and maybe of use to others, although I think you're all far ahead of me in understanding the support on offer.

That is a very good answer so long as it doesn’t have accompanying expectations from adult children to fill the gaps.

In my experience the parents have enormous expectations from adult children who simply do not have the time resources to fulfil those expectations and the same parents refuse to do things that would help themselves like getting taxis when they can no longer drive for example.

So I totally agree with you on the independence so long as it is not accompanied by having excessive expectations on their children.

I wouid also look at if you can put in some sort of solid ramp system over these steps, even if just temporary, but long lasting, as navigating a step with a walker sounds problematic…..

Occupational Therapy/ Falls assessment via GP or social care is a key one if they want to stay at home. They know what rails, bathroom seats, trolleys, etc etc will help.

The steps are three steps up from the dining room into the sitting room and up until 3 months ago when I insisted they didn't even have handles on them. A ramp would be impossible, it would be too steep and take up the usable space in the dining room in their tiny house (don't get me started on why they bought this house, it's ridiculous)

Do you think it's worth getting a walker online whilst we wait for the assessment? I don't want him to fall in the meantime. Can I refer them for the social services assessment, or is it something they need to do via the GP?

I have a disability and have a brilliant lightweight rollator ... it only weighs 10lbs!
There are also wheeled ones that are light.
The beauty of a rollator rather than a walking frame is that you can use it outside and take it to town in the car. And you can sit on it if you get tired.

Agree. A care home for both of them is likely to be anything from £12k-£16k PER MONTH.

Be aware that they will not be beyond fibbing to down play how they are. I would maybe consider a retirement complex but DO NOT BUY!

My late Mum was in one and liked it but she only rented.

The other thing of course is that I know you think the house is unsuitable but its THEIR unsuitable. They will have got used to the little fobiles as did my Mum when she was living on her own. She shut the doors on rooms that had an issue ie heating not working in one bedroom. I also found out when she did finally move that she had a very odd hot water system which was in my view dangerous. The water would suddenly turn cold. I found out for a few years she had been doing a strip wash.

I wouldnt put this burden on a neighbour. Mum made a real nusiance of herself asking various neighbours and one had a gentle word with me. Its not for them to take this on

Good advice above about how to get them help so they can remain at home for a while.

You can refer them to Social Services yourself by calling Adult Social Services for their area. It'll probably be an answerphone where you can leave a message.

But I don't think it has been asked yet unless I missed it, would they be self funding? If they have more than £23k in savings, they would count as self funding and they (you) would be expected to source and fund their own care. Any assessment could be done by the manger of the agency/care home.

But there is only any point in that type of assessment if they will accept help.

Best of luck. 💐