No future planning and now crisis

[disappearingfish]

SIL is 83 and her health, mobility and balance have been deteriorating steadily over the last few years. She has resisted any real interventions, just the bare minimum of adaptations.

She fell this week and spent 6 hours on the floor before the paramedics came to get her up. Now she's frightened of being alone and she's taken to ringing everyone in her address book and guilting them to coming over to fetch and carry for her, pressuring them to stay overnight. It's a flipping nightmare. DH (her brother) is her only local family so is being run ragged, guilted all the while she refuses to use the new electric recliner chair, the new accessible bed etc. etc.

She does have a carer but she's only supposed to pop in a few times a day and she's done nothing about any other care. She's off her head on meds half the time (including stashes of pills she's ferreted away which are years past their expiry date). She's shouting at everyone who doesn't jump to attention, including the doctor and DH. Her lovely kind neighbour has been in tears at the abuse she's had. I get that she's frightened but my god it's hard.

There's no LPOA or anything else in place that can enable people to make decisions in her best interest. Her children live far away, have their own lives and families and are doing their best. No real point to this post but just had to vent. We saw this coming years ago and have tried and tried to tackle it but she wouldn't listen.

[SeriouslyAgain]

Vent away! It's so often the case. The refusal to forward plan is so frustrating and then everyone around has to pick up the pieces. Without LPA, no idea what can be done really but just wanted to say 'I hear you'.
Probably the 'best' that can realistically happen is at the point of the next crisis, family will have to push at the point of discharge so that some form of care is 'imposed'. It's so stressful.

[DustyLee123]

Does she have a social worker?

[disappearingfish]

Thanks @SeriouslyAgain you've said what others have said. Unfortunately she has quite a few people (still) willing to dance round her and it's allowing her to ignore what we are telling her. That she needs proper care in place.

[disappearingfish]

@DustyLee123 no social worker and no ability to get her to engage with one.

[EdithStourton]

I would contact whatever care team is sending the carer who currently comes in, and say that she needs more support. Hopefully that can trigger a review of her case. She might accept advice from them that she would refuse from you.

You have my sympathy. It is so difficult when you have an elderly relative who could and should have made some plans for the likelihood of a decline in their mobility and capacity to care for themselves, but has been wilfully blind. We had this with one elderly relative, who refused to do anything other than rely on her children until a crisis hit, and we're now having a similar-but-different scenario with another.

[AluckyEllie]

Unfortunately I’m going to be harsh and say you need to set boundaries now. Support your husband obviously big really try to get him on side. He needs to block her calls after a certain time, or on days he has said he won’t be available. Be crystal clear with other family members exactly how much he is prepared to take on for her.

This is not his fault or his problem. I’d get the lovely neighbour some flowers to say thank you and explain to them that you don’t expect anything from them/that it’s okay for them to ignore her.

She needs to fail and fall in a heap if that’s the only thing that will get her to realise she needs to accept carers/interventions etc. I know it’s not that easy, I really do. I work in a hospital and dear lord the number of elderly patients we get bouncing back into hospital over and over again because they cancel the carers or refuse to go into a home. It’s boggling and so frustrating.

[disappearingfish]

Current carer is independent, no team behind her. SiL really needs to be somewhere they can monitor her meds.

I've told DH to go over tomorrow and bin all her ancient tranqs and painkillers. I swear some are left over from when she looked after her own mum 25 years ago!

Thank you for letting me vent.

[disappearingfish]

Harshness gratefully accepted, it's exactly what everyone else who's been in this situation has said.

[SeriouslyAgain]

I second what ALuckyEllie said! Good luck - and to your DH!

[disappearingfish]

Care agency came today to talk options, 24 hour, live in or overnight. No decisions made yet so everything is still very much cobbled together.

She's ignoring all advice about keeping her legs elevated so now they're a swollen mess. I think she might end up in hospital if the sores don't heal.

So much else going on I can't keep up. DH has done a lot of running around but has also been firm about his boundaries.

[FiniteSagacity]

@disappearingfish I can only offer solidarity, this is so similar to what we’ve been dealing with and the mix of neediness, self-neglect and refusal to engage with those who can help is just exhausting. On the verge of capacity but not reality with any grip on reality 😔

[disappearingfish]

Thanks @FiniteSagacity that describes it perfectly, neediness, self-neglect and refusal to engage. Whenever there needs to be a serious conversation she just says "I'm too tired" and shuts her eyes and that's that! Then 5 minutes later she's on the phone to some random in her phone book saying "I'm dying can you come over straight away". Even if they live 100s of miles away.

Also discovered, as long suspected, a serious binge eating problem. Which now she's not in control of her shopping and fetching/carrying she can't hide anymore. She was eating kilos of chocolate, cake and biscuits at a time. What on earth to do about that?

[3luckystars]

Vent away!!!

[SafeguardingSocialWorker]

you can probably make what is called a Safeguarding referral online with her local authority.

if she is taking a load of random meds and neglecting herself physically then it's likely she will meet the threshold for some level of attempted intervention from services - it may well not meet the threshold for safeguarding immediately but it should generate some involvement from adult social care who could then involve other agencies.

[disappearingfish]

Thanks so much @SafeguardingSocialWorker. The doctor and district nurse is aware, would she be under an obligation to make a referral? Because at the moment she is just being viewed as a nuisance, not as a risk to herself.

[midgetastic]

Ignoring the real problem you now face and going back to your headline

How does one future plan though ?

Ignoring that everyone ends up differently

There is not much high quality sheltered living accommodation or a community that she could have signed up for , so there is a not a culture of signing up for such accommodation or communities ( which do exist in other countries )

Care in the uk is a last resort that is done as cheap as possible , no one plans to put themselves in that situation

And because there isn't really a good option no one wants to think about it and get mentally prepared- because there is absolutely nothing positive to look forward to

[tokesqueen]

Until people stay away, completely, and she has to phone emergency services then nothing will change.
Whilst people are calling in, doing her shopping, odd jobs, sorting problems etc then nothing will change.
Give social services 48 hours notice in writing and withdraw contact.

[disappearingfish]

How does one future plan though?

Some basic research - what care is available, how much does it cost?

Visit potential care homes and have a look around. Get your name on a waiting list even if you never take it up.

Adapt your home (or at least understand how you could) for future incapacity - grab rails, specialist furniture etc. Be realistic about whether your home is going to be suitable when you are infirm.

Talk about expectations of support and where it will come from. She expects everyone to drop everything for her now. People have jobs and children and responsibilities they can't walk away from.

Set up LPOAs and other permissions to enable relatives to speak to doctors etc. on your behalf.

Just endless stuff like that. For example, she now needs someone to stay overnight but the spare bedroom was rammed with stuff so DH had to clear it out so that someone could actually sleep there. It took him a day including a trip to the tip, all the while she shouted at him that he was stealing from her. Six months ago she could have done a lot of it herself. It always would have to be done but by refusing to do so meant others had to.

The thing she could have done 20 years ago was to lose some fucking weight. She is (sorry) enormous. Which makes care and treatment so difficult. She knew this in her 50s and 60s but didn't do anything. Sorry, I know weight is an emotive and complex issue but it can't be ignored.

[midgetastic]

Have you seen a care home you would be happy with ?

How many people are realistic that this is it - their lives are over ?

It's not the concept , it tue actuality in a world geared for youth and profit

[disappearingfish]

The care home issue is moot tbh, she will never go. She would, IMO, been so much happier in some kind of supported living situation five years ago. She's very lonely and while she was still able to converse and socialise she would have been happier somewhere with people around and less work/stress. Her house and garden need a lot of upkeep which has stressed and tired her out. It's been so sad watching her house degenerate around her ears but if we talked about a move she would shut us down.

Realistically she is now pretty trapped in one room, no quality of life and still refusing to discuss "the future" (which is now).

[AQuantityOfNaughtyCats]

We’re heading this way with elderly relatives who refuse to see that at over 80 they need to plan ahead. “We’re not there yet” is their mantra, ignoring the fact that when one of them does have a stroke/break a hip/develop dementia it then becomes a crisis whereas downsizing to a manageable house with level access, potential for a downstairs bedroom/bathroom, easy to care for garden etc etc retains quality of life while also ensuring they ARE able to cope when things inevitably start to deteriorate. So frustrating.

[disappearingfish]

Huge sympathies @AQuantityOfNaughtyCats. I don't know what the magic words are to unlock this. All the evidence is right there in front of them.

DH is out on his boat today for some R&R. He got a call because she wants her duvet cover changed (it was changed yesterday but she doesn't like the one she's got on now🤷🏻‍♀️) he said no. That she isn't actually sleeping in her bedroom/bed right now didn't seem to make it less of an emergency 🫤 she's going to call one of the women from the WI instead....

[Notmorerainagain]

Same here and I'm fed up of it. Neediness, self-neglect and refusal to engage is spot on!

NO to every offer of help: cleaner, carers, moving stuff they said they want taken to the tip, fixing trip hazards. Then I'm expected to spend 4 hours each way on the bloody motorway dealing with some pointless shit that could be dealt with by their pig-headed "partner" or by the people we've offered to get in to help. As if I have nothing better to do and no right to downtime.

We've been saying that this would happen for 10 years and now she's perfectly happy to run me ragged and stress me out. Pure selfishness. No wise advice but you're not alone if it makes you feel any better!

[MereDintofPandiculation]

@AQuantityOfNaughtyCats

We’re heading this way with elderly relatives who refuse to see that at over 80 they need to plan ahead. “We’re not there yet” is their mantra, ignoring the fact that when one of them does have a stroke/break a hip/develop dementia it then becomes a crisis whereas downsizing to a manageable house with level access, potential for a downstairs bedroom/bathroom, easy to care for garden etc etc retains quality of life while also ensuring they ARE able to cope when things inevitably start to deteriorate. So frustrating.

Well, it doesn’t retain quality of life necessarily, because they’re living in a smaller space. So they have to balance up whether it’s better to have a partial reduction now in return for postponing the major reduction that will come later.

[AQuantityOfNaughtyCats]

@MereDintofPandiculation

Well, it doesn’t retain quality of life necessarily, because they’re living in a smaller space. So they have to balance up whether it’s better to have a partial reduction now in return for postponing the major reduction that will come later.

They don’t use two thirds of the rooms they currently have!