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Behavioural issues...the "perfect" storm - Page 2 - Carers UK Forum

Behavioural issues...the "perfect" storm

Share information, support and advice on all aspects of caring.
I'll hazard a guess that it wasn't the paramedics refusing to come out - it was the call handler refusing to call them out! I'll bet the call handlers have been instructed to ignore as many 999 calls as they possibly can, to avoid adding to the chaos in A&E. I'll bet if you'd been able to speak to a paramedic straight away, they'd have come over straight away. As others are saying, lifing a dead weight person is usually impossible for one other person, and very often injurious to the lifter to boot!

However, at least your mum is in hospital, and, as you say, giving first hand evidence of her dodgy mental state and behavioural attitude, which should reinforce the necessity for getting her into a care home.

Do take particular pains - including maybe in writing, so they can't contest it! (or deny you said so!) - in making clear you will NOT be playing any further role in her care, and basically 'handing her over'. Grimly, it's not uncommon for folk here to discover that is the only way to get SS/NHS to take actual action - they are (I suppose understandably, given the on going crisis in the NHS and social care) desperate to pass the buck back to family carers.....

So you mustn't show any signs of 'weakening'......

In the end, it won't matter what your mum wants or doesn't want, the hospital/SS will make their decision. (It's just been in the news that a hospital has finally 'expelled' a patient who refused to leave to alternative accommodation after TWO YEARS - god only knows how they managed to stay so long in hospital!)

Yes, things have 'blown up' very quickly but, again, that is something that other forum members have found for their own situations - that suddenly there is a crisis, and then everything changes dramatically, and permanently.

I hope the situation settles down once your mum is in a care home being 'fussed over' by staff there, who will see to all her needs.
You need to be aware of how the really awful "discharge game" is played. First, they will have a timescale for getting people in and out again to free up their bed. In order to achieve this, the staff will "forget/tell lies" about the discharge process. For anyone like mum, they are supposed to do an "NHS Continuing Healthcare Checklist" as a matter of routine (Google this for information) only that means the patient needs to have a series of assessments, at least the physio and occupational therapist. So anytime discharge is mentioned, just keep mentioning the checklist.
Promises to do it once mum is home in familiar surroundings shouldn't be believed, either the checklist, physio, or anything else. Mum waiting nine MONTHS before the physio turned up, unaware of mum's very special knee replacements. When she asked mum to do exercises which were impossible, she waltzed out of the door never to be seen again. The special chair took almost a year to come, the air mattress two weeks, dumped in the hall, everyone expected someone else to install it, finally the district nurse said she'd do it, only the wrong mattress had been ordered and we had another round of that silly game a few weeks later, whilst mum was left on an ordinary and unsuitable mattress.
They also have a duty to make sure a discharge is "safe", in fact hospitals can be fined for "unsafe discharges" when a patient is out and back in within 28 days. Again, they forget this. My mum was in and out well within 24 hours, no one would listen to me, her daughter for over 60 years, they all knew better - but I was proved right in the end.
You know your mum better than anyone else. Unless you are certain she will be able to manage at home, it's actually kinder to discharge from hospital either to a rehabilitation unit funded by the NHS, or residential care, because one thing is certain, from now on things won't get better, they'll just get worse and worse.
Finally, DON'T visit every day, because then you will be labelled as a caring relative who will help when the chips are down, even if you don't want to. (My mum kept saying "my daughter will..." even when I was virtually unable to walk, with a disabled son, waiting for two knee replacements). Make sure your mum isn't saying this about you.
thank you so much for that information. I've never been in this situation before and am terrified.

When husband and I visited briefly yesterday, she was still in the admissions unit, but was about to be moved to the Geriatric ward when we left. In admissions, she made absolutely no reference to ignoring me on Friday, didn't even ask why I wasn't there with her, or when she "woke up". This has firmed in my mind that she deliberately blanked me and knew I'd left. Otherwise, I'm sure I'd have been asked about it yesterday.

In Admissions yesterday, she was quite bright and bubbly. She said she'd been put on morphine, was on a drip and had the nose-wires for oxygen, and that all the staff bar one male nurse were "absolutely lovely". She'd had an x-ray, and they'd found a "very old" fracture in her back. She thinks it might even be from when she fell of the parallel bars at school, in the 40s. There are no new injuries.

We left at 4pm to visit my best friend who also happened to be in the hospital for one of her dialysis sessions, and my sister in law visited Mum in the evening, after she'd been transferred to the ward. She found a woman who was crying, frightened and feeling vulnerable, as her geriatric ward was not the cosy, loving place that admissions was. Instead it was filled with elderly people who are ill, confused, wandering around, shouting, crying, swearing and generally disturbing her. Sandi said she managed to calm her down, but warned me that she'd be trying to get home as quickly as possible.

I'm going in today with my younger sister for a quick visit. I'll now go armed with the information you've all given me. She is NOT coming home until she's able to look after herself properly, or there's a care package in place. This last week and a half has proved conclusively that three of us working together are not enough to keep her safe in her own home. It's no longer about her wants. It's about her needs now.

I have the feeling this is going to be a fight....
Yes, it will be a fight - but you are well armed for it! So that's good.

Can you find out which local care homes would be the most suitable for her, and if they have vacancies, and then visit the possible ones to 'get a feel' for them (you 'get a feel' very quickly, I promise - I have, with all the ones I've seen with my MIL!) (Do bear in mind, though, that the most important factor is the staff, and the 'atmosphere', not whether the place is five-star!)

What would be the financing of her move, would she be self-pay, and is she eligible for any 'funded respite/convalence' whatever it would be called, for the purpose mainly of getting her out of a hospital bed?

I would say it's worth doing the legwork of checking care homes yourselves, to 'fast forward' her transfer, and give you more say in where she goes (if she is selfunding she can go wherever she likes - but if NHS/SS funded then not all homes take non-self-funding respite/permanent residents)

Wishing you all the best, and although its sad she's so 'down' in the geriatric ward, hopeullhy that will encourage her to leave ASAP but NOT back home.....

Remember to keep saying to all the hospital staff (and putting it in writing!) that you are NOT providing ANY care for her at all.

All the best at a difficult and worrying time - Jenny
Thank you Jenny.

I have the feeling she'll have to self-fund. My Dad left her well provided for, in a house with no mortgage on it and half his MOD pension, as well as her state pension, so I've absolutely no problem with her paying her own way as she can easily afford it.

I'll discuss this home options with my sister today and we'll start looking around, so we're at least informed.

My Dad was in a lovely care home, but he had Alzheimers, so it was suited to his needs. I'm a bit lost in all this - when Dad was becoming ill, my older brother was alive and he did a LOT of the organising, plus social work was heavily involved and wonderful. Now I'm on my own (two sisters miles away) and am well adrift at the moment. I'm definitely drowning at present.
There are different rules for temporary, as opposed to permanent, residential care - if you go for a "Rehabilitation" hospital the NHS will pay for that, and there should be a financial assessment before Social Services charge anything. My dad was one of the government's top scientists, so mum had a wonderful Civil Service pension, but even that plus her ordinary pension and her Disability Living Allowance wasn't enough to pay the weekly care home fees. So you and your sister need to discuss what to do about the house IF mum stays in residential care. It might be worth considering a live in carer as an alternative, if either of you would like to keep the house. Is your mum in receipt of Attendance Allowance?
Things took an interesting turn today. She mentioned that she was losing sensation in her legs this morning, so they took her in for an MRI scan.

Not only did Friday's fall cause the broken bone in her back to compress a nerve, but she's now got pneumonia and fluid on her lung. Initial response from neurosurgery is that they're unlikely to operate (position of break makes it difficult, her age is taken into account and the risks associated with surgery all make it look like a bad idea). So the doctor who rang me this evening thinks there's a likelihood she'll be on bed rest for up to 12 weeks, with physio and occupational therapy and possibly longer recuperation if needed.

The good news is she's more settled in her ward now, the pain's pretty much under control and she, amazingly, doesn't have an impacted bowel, despite telling us she was constipated. Sister and I are going back in on Tuesday and we'll have a talk with the doctor then, to find out what action they've decided to take with her injury.

From what the doctor said, there's just the one break, so I can only assume it's this old break that they told her about from Friday's x-ray, and that something about Friday's controlled fall or lying on her floor for so long has shifted it and compressed the nerve. Apparently the pneumonia's probably been caused by lying on the floor too, as she wasn't struggling with her breathing at all until then.
Glad she's more settled, and that they are treating her. Once 'treated' will she have that 12 weeks in hospital, or a nursing home, or what?

Re her funding, if she does go into residential care, then be aware that self-fundings costs around a hundred pounds a day....hideous but inevitable alas. Do consider a live-in carer and compare costs. The upside is if she does go into residential care she can choose where she goes. This may not be overall true, but the 'best' home I found for my MIL was 'self-funders only' and it was very nice -cosy and cheerful. As you know, care home economics are difficult - councils 'underpay' for the place, so self-funders have to 'over-pay'......

But if the 12 weeks 'recuperation' is NHS funded, then that defers any decision for a while, so that's good. Gives you more time to 'shop around' if residential care is what you decide.
Well, we're finally getting to the bottom of it all.

Her spine is, as the doctor described yesterday, "swiss cheese".

She has two spinal fractures, one on T12 (old fracture) and a new fracture on T10. The T12 fracture is surrounded by fluid that's compressing her spinal cord and causing spasms, loss of sensation and a LOT of pain. There's also pneumonia and pleural effusion. I'm finally learning medical terminology....

Surgery has been totally ruled out, so she's looking at 12 weeks bed rest at a maximum of 30 degrees, followed by a back brace and rehabilitation.

Once she's medically stable, they'll transfer her from the hospital she's in to one closer to home (which doesn't have an a & e dept) so visiting her will be much easier. I'm hoping they move her before too long, as it's a really busy hospital, her ward has dementia patients as well, and one of them keeps nicking her hearing aid batteries! My Dad was a kleptomaniac as well with Alzheimers so we know all about it from experience. I just hope they realise they're batteries and don't swallow them.....

Her pain's more or less controlled now, she's also on diazepam and just wants to sleep. I know her pain's being managed, as she's back to sniping and grumping about some of the nurses and other patients. Trouble is, she's being rude in front of them, so she may reap what she sows on that score.

I've no idea if she'll ever be fit to come home or not. We'll see. What I do know is that this is a life-changing event and it's not going back to the way it was before. What it does lead to....we shall see.

Thanks everyone for the amazing advice and help. My battle right now is with the emergency services and local authority, to get some answers as to why nobody would help her. My complaints have been acknowledged and since then, they've maintained radio silence so I assume someone somewhere is having to do a LOT of explaining.

x
bowlingbun wrote:There are different rules for temporary, as opposed to permanent, residential care - if you go for a "Rehabilitation" hospital the NHS will pay for that, and there should be a financial assessment before Social Services charge anything. My dad was one of the government's top scientists, so mum had a wonderful Civil Service pension, but even that plus her ordinary pension and her Disability Living Allowance wasn't enough to pay the weekly care home fees. So you and your sister need to discuss what to do about the house IF mum stays in residential care. It might be worth considering a live in carer as an alternative, if either of you would like to keep the house. Is your mum in receipt of Attendance Allowance?

Sorry, didn't mean to ignore your question, I didn't spot it. She doesn't receive any benefits apart from her pension, as far as I know. We're in Scotland, so that might make a difference as to how the care stuff is handled, but we're anticipating having to sell her home to pay for residential care. I've assumed she'd have to.