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.

Also let's face it these are people who know time is running out and that is scary. I'm only 41 and the other day it did hit me a bit I have only 27 yrs until official retirement age. Very true. I’m in my 70s and 27 years takes me to an age I’m unlikely to reach.

Also there is a generational issue here they aren't so savvy about technology and other things, we are so it might be easier for us. Don’t bank on it. The pace of change is such that technology of your later years may seem just as unfamiliar as yours does to us. I came to computers when it was a “minicomputer” the size of a wardrobe, that I had to boot up in the morning using a string of numbers followed by a lot of coded instructions, and programs and data were stored as holes punched into paper tape. It’s not incompetence with technology that gets us, it’s the magnitude of the accumulated change. And that’s just going to get worse.

I think that it often comes down to personality too. My in-laws (early 80’s) haven’t done much for us over the years (never offered to babysit certainly no financial help) but they’ve got everything in place to minimize the burden on their children if/when they need additional support. POA’s set up, already made inquiries about supported living/care homes and decided where they’d like to move if the time comes (and looked into funding it). I have to give them credit for doing this.

Whereas my Dad (85) has heavily relied on other people esp. me) to sort things out for him. The women in his life have always organized him and he’s v. good at throwing his hands in the air and saying that he can’t deal with things (even though he hasn’t got dementia and has good pensions). He expects to be looked after! 😂

@Spectre8 no one has mentioned inheritance on this thread as far as I know.

Things are coming to a head here. Multiple carers are now saying they can't cope with her moods / behaviour / needs and that she needs to be in hospital or residential care.

@HamBone my dad has expected to be looked after by women his whole life as well but is pretty good at managing himself when he is alone.

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

Your husband was right to say no and needs to keep doing that. She's enabled to carry on like this as long as people dance to her tune. If they stop, it will force change.

It isn't just the welfare of the elderly person that should be considered, it's the health and welfare of everyone else. I have a family member who was very badly affected by an elderly relative who acted in a similar way to your SIL. It had a profound effect on their life and their mental health. Your SIL is not your responsibility.

She isn't happy, everything everyone is doing for her isn't making her happy, you simply can't make her happy. What you can do is help improve the situation overall for everyone, and harsh though it seems, that means less "helping".

Tbh, I’d advise your DH to step back and let her children know that action urgently needs to be taken. Her children are presumably her next of kin and they now need to step in to organize her care.

Yes, they have their own lives and live far away, but that’s what adult children have to do sometimes, myself included. My Auntie lives locally and helps my Dad to a limited extent, but she hasn’t been involved in major decisions or organizing his care. As I mentioned upthread, Adult Social Care has been v. helpful to us.

Thank you again @HamBone. It's not quite as simple re her children, one emigrates overseas and one is in the forces, currently deployed and not easily contactable.

However, decision made today for residential care, she has three to choose from, all very nice and local.

*emigrated. Can't edit on the app.

That’s a relief, it sounds as if it’s the best option for her now.

I think the GP and local authorities can easily decide on this ?

and yes, the children should be contacted no matter where they live

That’s my feeling as well, @MamaAlwaysknowsbest. I don’t currently live in the UK but I’ve been involved in all the organizing/decision-making regarding my Dad.

With technology, I don’t really think that being abroad is a good excuse not to help out nowadays. So much can be achieved with Zoom calls and emails and if necessary, taking a leave of absence from work to come over for a couple of weeks. I’ve had to do that a few times, DH and the DC managed.

Being in the Forces is different if they really can’t be contacted.

It's very hard to really understand what someone's care needs are over a zoom call though. One of the issues is that there are so many people involved in her care and they all have different pieces of the puzzle. The doctors, carers, the cleaner, the nurses, her friends and family. I think she is not thinking straight right now and someone needs to get to the bottom of that.

How did those with experience get Adult Social Care to progress and actually assess please?

I am next of kin, I’ve called DF’s local ASC multiple times, have only managed to have an ‘initial contact’ call that was then referred to the ‘duty team’ but when I chase they haven’t got to DF yet and mumbled something about ‘priority order’ yet the NHS who visited DF (because they consider him to be housebound) stated DF ‘can’t stay in his own home’ as things have deteriorated so much (both his health and the state he was living in).

To get back to the subject of the thread, this was avoidable but DF still doesn’t recognise he needs help and is against having a carer wash him for example… so if and when ASC do finally assess, will they take his word for it that he can walk 20 minutes down to the shop for his groceries when he actually never leaves the house and wasn’t eating the groceries I was bringing anyway?

In addition to the NHS, other Local Authority agencies have visited and expressed their concerns too but it seems none of this affects the ‘priority order’ and I fear we’ve fallen into a trap of helping and the Local Authority is very happy to let us stay in the trap when nobody can actually meet the complex care needs now required.

Ask them all to write you a letter, addressed to you or DH at your address and referring to your SIL by name in the letter. Ask them to describe the types of difficult encounters they've had with her and why it causes them a problem, tell them to be blunt and not to put a positive spin on it. Some people won't have time or want to do it, some may find time if that time is paid for or simply if they have sufficient desire to help SIL/you and DH.

The purpose is to paint a picture by gathering evidence of the situation SIL is in, the state of things with her, her home and care needs. If enough people chip in, from the carers and cleaner to the neighbours and yourself/DH, a lot of information can be gathered and patterns seen. This information can then be provided to to others such as relatives who don't live nearby and social services.

Take photos of the out of date meds in her cupboards and the enormity of the stash, I imagine it's not just a packet or two. Photograph the hoarded or filthy areas. Provide factual information such as the size of SIL and how it hinders physical care, your and DH ages/commitments/health, the distance in milage between SIL and DC.

If she has capacity SIL can still decline official help, but you'll know you tried and perhaps the picture everyone helps paint will indicate SIL has less capacity than she thinks anyway 🤷 . You can't effectively fight SIL corner without enough information.

If you've tried your best and she declines help, you're justified in walking away from the mess. She does have a responsibility towards herself. If someone wants to keep going as usual until they can't, that's fine, but they need to then accept the consequences of their decision and not expect everyone else to drop everything to provide 24hr nursing care when they become too frail/ill to manage.

the NHS who visited DF (because they consider him to be housebound) stated DF ‘can’t stay in his own home’

Get that in writing @FiniteSagacity . Present a copy of it at the assessment. What will probably happen sadly is that something will need to occur in which DF is admitted to hospital. At that point everyone must refuse to help if he comes home, hospital then won't be able to discharge him without a care package in place, whether that's carers coming in or a place found in a care home.

@FiniteSagacity I'm going to have a little rant here so I apologise

This is the reality of adult social care currently. We are firefighting each crisis as it reaches us because there isn't the staff to do anything else. For anyone like your dad who needs a fairly urgent assessment there are another 20 - 50 people all equally as urgent per actual available social worker to do the assessment.

Anyone less urgent basically won't see a social worker /social care worker until they become more urgent. Anyone more urgent will be the person currently taking up most of the social worker's time to sort anything out for because unless you get lucky (because someone else has died or gone into hospital):

-There is no home care fit for purpose that the local authority can afford
-There is no residential care anywhere fit for purpose that the local authority can afford
-There is a six week wait for preventative/ reablement services because they have all been diverted into supporting hospital discharge

Social workers are leaving adult social care in droves because there a
is only so many times you can walk into a persons house and tell them and their family members that they need help but none is available, or knowing if it is available it's going to be crap/neglectful care.

The social workers leaving are being replaced with low quality agency workers who move on when their poor performance is highlighted. Or worse, they stay, unchallenged by fatigued managers who just need as many names as possible on the computer system to allocate cases to. Increasingly they live hundreds of miles from the Local Authority employing them because 'Teams'.

I'm one of the few remaining social workers in my office who qualified under a labour government.

My only advice is to just keep ringing. Squeaky wheel bumps the priority because anyone sitting there quietly is presumed to be ok until we hear otherwise.

@SafeguardingSocialWorkerrant understood and context appreciated - thank you for everything you do. I did think scarce resources was the root of it all - and it is why the lack of future planning and resistance to all previous earlier steps are so frustrating.

@NewJeans thank you - there was a really lovely nurse who has treated DF for years and has followed up before, I hope to get something in writing by talking to that team.

Unfortunately the latest crisis was over Christmas and I think we’ve trapped ourselves by trying to help DF avoid a hospital stay… no one wants to recreate that horrendous situation to trigger an urgent respite or hospital stay but the overstretched system seems to have locked us out without that type of crisis.

We’re in a particularly tricky situation because of ongoing healthcare needs (community nursing) and none of us living in DF’s council area. So when staying with any of us, we’re not able to engage with his own GP but having to talk to catchment GPs and see what can be arranged with NHS local to us. This has muddied the waters.

Even in a clean, safe and supported environment, DF is not eating or taking medication, let alone the daily living that care assessments are supposed to support. It’s almost like he wants to kill himself (he says not) but with an audience of exhausted and traumatised family.

Solidarity everyone, @FiniteSagacity your situation sounds so difficult.

SIL phoned us at 1230am asking us to go over because she felt sick, woke us all up, sent the dog into a barking fit when he normally sleeps all through. She called her neighbour at 615am.

She had a carer there! I don't know how long it's going to take to get her into residential care so it's going to be a rocky few days/weeks.

Is it fair to just take her phone away from her to stop her from phoning everyone?

so if and when ASC do finally assess, will they take his word for it that he can walk 20 minutes down to the shop for his groceries when he actually never leaves the house and wasn’t eating the groceries I was bringing anyway? Yes, if they don’t have anything to contradict it. So make your voice heard!

Random tip - if a SW or any other professional visits a housebound elderly, make sure you’re the one who politely sees them out afterwards. I’ve had many a useful doorstep conversation.

I second this. My late mother told her GP, very convincingly, that she had three meals a day, took all her meds, brushed her teeth after every meal, took showers, did housework and went for walks. None of it was true but he seemed to believe her, and thought I and my siblings were lying or exaggerating about the state she was in and how badly she had declined mentally (we had written to him). No doorstep conversation was possible in this case as we were at the GP surgery.

@disappearingfish wishing you strength for what will hopefully be a relatively short time 🤞

I’m quite shocked at the moods and deterioration in behaviour recently in DF and he lies to strangers (anyone who will listen) about his day to day life.

DF has an modest income that could support living at home with a little daily care but tiny savings. His money is all in the house and the condition of the house is going to make selling (or even Equity Release) hard. I have put his name down for a care home I hope he’d like but they have no space for respite or a new resident and the house would have to be sold which DF won’t agree to. We’re hoping once he’s there it might appeal more - so many people to listen!

@MereDintofPandiculation noted re doorstep chats - thank you. The NHS staff, many of whom had been treating DF for years, have been encouraging me in to ‘provide a second pair of ears’ for months. I will try to gather more evidence.

@FictionalCharacter I was with DF at the GP in December and while he didn’t lie, he focused on 1 issue and it felt dishonest by omission. GP did the extras of weighing him and checking blood pressure when I said he’s losing weight but he’s not currently in that GPs area. Just getting him to that pre-arranged appointment was like climbing a mountain and all that was discussed was 1 rock in the bigger purgatory of his currently pretty miserable existence.

I also wondered if there’s any way in to the local Integrated Care Board via NHS to look at ‘continuing healthcare’ because the care home have said the regular treatment from nursing would still be provided by NHS and not their nurses so the magical ‘package of care’ the nurses were trying to persuade DF that he needed definitely needs multi-agency consideration.

All his children would sell the house in a heartbeat to buy him a better life now with the right care but he can present as having capacity to make decisions so we’re stuck.

@FictionalCharacter my late fil was very much like this. He'd tell the OH etc that he could do everything when they came round to see what they could do to help him. What he meant was, he wanted to live how he was (which was in a pretty disgusting state) and keep on drinking without anyone bothering him, but let my dh come round and have to deal with it all.
You have to be so very firm with the professionals that the person does need the help, and trying to get your parent to say that yes, they did need help (as in our case fil was very much of the mind it's no bother, I can do it etc) and they were all for going with nothing in place. I think some of it is pride, that they don't want to be seen as incapable.

I think some of it is pride, that they don't want to be seen as incapable. Some of it is staving off the recognition that they’re on the downward path to a care home, loss of most of their possessions and all of their autonomy