Mother in hospital AIBU to refuse to take her home without a care package

[TheoriginalLEM]

Well i know im not BU.

We are at crisis point and despite A&E dr initially wanting to discharge, my refusal to accept prompted a frank discussion and he basically told me "do not walk out of her without a care plan"

So how do i make this happen? What do i ask for? A&E dr has put her down for a multidisciplinary discharge team - he did call it something but im sleep deprived and i cant think straight. This apparently involves social services.

My mum is difficult. This is categorically the understatement of the century.

Her issues are complex and compounded by mental health issues and possible dementia.

Crisis = acute aortic aneurysm with blood clots. Panicking vascular surgeons readmitting to A&E with ensuing chaos, lack of communication and now "an excuse to get a care package in place"

There isa DNR in place and dr suggests palliative care only - im a little wtf about that. She was helping me do her garden at the weekend, in a rare window of lucidity.

My mother is abusive which makes caring for her almost intolerable.

I can no longer cope.

What q should i be asking

Helena, my experience wasn't even that bad compared to some of the lovely people on the Alzheimer's message board.

Op as a pp said illnesses can bring dementia symptoms forward. Not necessarily the case here, but be prepared. Or it could be delirium?

Is the morphine patch new? That's something that might not be agreeing with her too

You clearly and obviously can't be her primary carer with this level of need. It would destroy you. Honestly I think residential care is likely to be the best option. I know it's not ideal but looking after her is going to be an incredible amount of work and it is far better for that to be delivered in a way that shares the load between a team, each member of which can go home at the end of the day, rather than being the sole responsibility of one person who doesn't have great mental health themselves.

If you aren't involved in her care you can use whatever emotional energy you have to make any connection with her that may be possible in whatever lucid moments come around. If you are trying to juggle all this caring work you'll be too overwhelmed to engage. Residential care will free you to be daughter rather than nurse.

Dealing with a relative with dementia or Alzheimer's is draining and exhausting and makes you question your own sanity at times. It's not anything I would want even my worst enemy to go through.
Nobody understands until it happens to them. Myself included. Last few years have been an eye opener. Its hard.

Where is the Daily Mail when you want them to actually pick up on something important ??

I can echo so many peoples' experience: DM total decline in hospital, respite home not providing any physio let alone care; no one in the hospital taking responsbility for her care; unsafe discharges; care in the community being promised but not materialising ('oh we had an emergency elsewhere'); being directly LIED to by nurses, SWs, and even the head of nursing. Big complaint underway, am sure it will go nowhere but we have to try.

Mum died of bronchopneumonia on Nov 1 2018. She had a DNR but we had been specfically told that an infection would automatically be treated as she 'only' had a broken arm (actually a totally catastrophic fracture).

No one told us she had bronchpneumonia, after 4 weeks in hospital with declining physical and mental health, which begs the question: did they know she had an infection? if yes, why was it not treated? if no, why not? What was their plan for warding off infection? If they knew she had it, why did they not inform the family? Why/how could they lie by saying they tried to contact me the night she died, or tell DB that her death was 'somewhere between expected and unexpected'? WTF does that even mean anyway?

LEM please come and join us on the caring for elderly parents thread.

Well, the Fail wouldn't want to be highlighting how the Tories have starved both the NHS and Social Care of cash, now, would they Yolo?

We won't be seeing this within its hallowed pages. Unless, of course, LEM should let slip she is in Wales or Scotland, in which case they'll be in like Flynn to point out the failings of the non-Tory devolved governments.

Sorry Yolo, meant to give

Sorry about your mum, and the awful experience you had.

It looks like many of you have had horrendous experiences. I am so sorry for everyone who has gone through this.

The daily mail wouldn't bother with any of our stories on this ( and other ) threads as it's too boring for them.
All governments have let the elderly down as I had a lot of this with my mum in 2010 and things were not as bad as it is now and it was still hard. She died in hospital of an infection that was flagged up as 'rare' and that was 'covered up! '

I can weep for you all on here and the op of course, as you can hear the frustration of having to deal with people who seem to not really care and relatives who can no longer help themselves. Compared to cancer patients , ones with any kind of dementia are treated as second class citizens in my book.
Everyone should have dignity but they don't.
I'm sorry for you all and feel so helpless.

@yolofish my MP was awesome! It may be worth trying them.

Re discharges with no care in place, nobody even in the house, it's essential to make sure the person has no house keys on them, so that this can't happen. Because it does, too often.
If you have to, take the keys away by stealth.

As for Soontobe60, I can only assume that she has no experience of caring for anyone with dementia.

I wouldn't wish dementia, or the care of it, on anyone, but whenever I read this sort of pious and sanctimonious comment, I do wish that person would have to look after someone with dementia on their own, for a month, with little or no help, and very little sleep, since the person is up and down half the night, banging and shouting and demanding to go out at 3 am. Oh, and asking the same question 30 times in one hour, and flying into furious rages at the most minute thing.,

And if I ever get dementia, God forbid, I most certainly do not want my dds to have the worry and burden of looking after me. They have strict instructions, also clearly stated in my Health and Welfare power of attorney, to find me a reasonable care home PDQ. Thankfully there should be enough money to pay for it.

Getting - and cutting wires, leaving the oven on, front door open, demanding to go out shopping but then getting annoyed they are out asking why you've done that to them, inappropriate and hurtful comments, thinking the kitchen bin is a toilet, eating pet food, cheeking medication. And that's before the sun downing begins when the fun really starts.

Tolles 'in like Flynn' I love that expression!

I’m afraid I’ve had to disengage from trying to get anyone to care for my mother or provide decent healthcare for her. GP, hospital and social services are more than happy to leap on her protestations that she’s ‘fine’, even when that ‘fine’ is when she’s been discovered at the bottom of the stairs with broken pubic bone & pelvis having fallen 10 days ago and surviving on water from crawling to the under stairs loo. But hey, she’s fine because the obviously confused, malnourished, unable to stand and obviously very ill woman says she is before being put on a stretcher... That was the last time I attempted to help.

They weren’t even going to treat the broken bones as she was ‘fine’ apparently. Fuckers. And then the hospital couldn’t quite work out if anyone had bothered to do xrays although she couldn’t walk & had been admitted with suspected broken pelvis. But hey, she’s elderly so why bother doing something like an X-ray right? They wanted to discharge her instead.

It took me over 3 days to get anyone to care enough to even attempt to ‘find’ a set of xrays and whilst that was happening I had a run in with a delightful nurse who did so much harm with her attitude and cruelty towards my mother, and me.

This revolting nurse accused her of bed blocking and told her to go home. Another nurse later told me that my mother cried. That same awful nurse was vile on the phone to me and told me my mother didn’t need a social services assessment because the physio had come that morning and she’d been signed off as being able to stand, walk, and go up stairs! Amazing feat considering she couldn’t even sit up and feed herself solids. So this nurse had also decided to cancel the rehab nursing home stay that had been talked about as the next step. Apparently the nurse had told my mother there was no reason why her daughter shouldn’t look after her at home instead, and my mother had just nodded.

This delightful nurse also ripped into me for not visiting or looking after my mother, and that ‘people like me should be ashamed of thenselves’, and that she would be discharging my mother that night and I was written down to collect her whether I felt like it or not, if I didn’t want her waiting in the cold.

Lovely woman. And over reaching herself somewhat on some one woman crusade to rid the NHS of all those pesky inconvenient patients...

I asked her sweetly if my mother would be walking out of the ward as she seemed to have made such a marvellous recovery. She said ‘no of course not, you can turn up and push a wheelchair to your car’

Oh. Right. Now, I’ve been in good communication with the hospital and staff, so I assume you’ve read my mothers notes before making these decisions?

By the way, I know the notes are in her file as another nurse phoned to talk about them earlier, so they’re definitely updated.

Yes? Ok. Right. I have a couple of small questions... (ignoring her rude response I plough ahead because I’ve lost my temper by this time, and I am terrified this compassionless hideous person is going undo everything I’ve fought for & kill my mother through her cruel actions).

So if you’ve read her notes, you’ll be aware that I live in X (city 300+ miles away), how are you anticipating I get to you this evening? Or are you just going to abandon my ill mother in a corridor hoping I might turn up? Oh right... you hadn’t thought about that.

Also, next little detail, I dont have a way of transporting her home. No, I don’t have a car or a liscence, no, I can’t actually hire a car, or a taxi, well, it’s a bit complicated for me actually, it’s in the notes though, that you said you’d read.... so is my mother ok on a bus? On her own? She’d have to wait all night at the bus stop though first (rural) What? Oh. Right. I see. Not good enough huh?

Well, as I said, if you’d asked me, instead of phoning to shout and insult me, or if you’d read my mothers notes, you’d have known that I’m been seriously disabled due to a illness that leaves me bed bound, and reliant on carers every waking moment, oh and unable to travel except lying flat. So, I’m just wondering how you’re expecting me to push my mothers wheelchair out of the ward later tonight, from my bed?

And yes, ‘people like me should be ashamed of ourselves shouldn’t we?’ Which bit was that exactly? That I can’t be there to insist you do basic medical care for my mother due to my own disability? Yes, I find that pretty sick making too...

She put the phone down on me!

Anyway, after much more effort and I’m afraid to say, crying down the phone whilst explaining how near my mother came to being thrown out of a hospital in her nightie, confused & with two broken bones undiagnosed and unstabilised or manages in any way... all out of some kind of spite... waiting for a daughter to come who can’t get there. Oh it beggars belief.

Well, someone finally found an X-ray, which I was reassured had been done on entry but had got lost (another nurse told me it was actually dated days after admission, basically when my complaints had started to get annoying to them). Also the ‘physio assessment’ was found not to have been done properly, it had been ‘estimated due to patients exhaustion and uncontrolled pain levels’?!

They had sat by my mothers bedside and asked her what she could normally do, which my mother decided was a test to trick her ‘into a home’ so lied throughout, and they lapped it all up although it was very clearly untrue, and wrote it down as having observed her doing it there and then in the hospital!

The redone assessment was with an OT and a physio, and they found she couldn’t do anything, and a nice, professional nurse (one id sniffled to on the phone after the awful one had hung up on me) made it clear my mother was badly malnourished not just from her fall but long term probably due to not coping at home. So, after medical treatment she went straight to a rehab facility for 8 weeks where she slowly regained some weight, mobility and also got over the shock of both the fall and such an awful experience in hospital.

At that hospital from the moment she got brought in it was like she had a DNR and a DO NO TREAT IN ANY WAY stuck on her forehead because she was over 60yrs old. Utterly terrifying. And everyone just carried on not treating her because they followed the person before.

For example, can you imagine going to A&E after a bad accident and them not making any effort to X-ray the limb poking out the wrong way or the cuts etc, because you are black? Or a woman? Well... turns out that’s what can happen if you look old. It’s bloody horrifying. She’s actually in her 60s but looks loads older due to grief and untreated illness, so she gets treated like she’s 80... it helped when I could talk to a doctor refusing to do any xrays ‘because at her age it was just about making her comfortable’ (which they weren’t even doing anyway!), and I actually got him to think about what her age was, and what she was doing up until a couple of years ago. Like, she could still be working! We will all definitely be working at her age when we get to that age. Ffs. Ageist bastards.

But she doesn’t help herself...

Unfortunately although she was assessed as needing carers at home she sent them all away. She passes all the cognitive tests as she’s great at seeming lucid for short periods of time in conversations about general chit chat. But she’s deeply paranoid about anything to do with social services or carers. She believes they take your pension book and you have no right to your money or house, or any of your basic hunan rights. And nothing will dissuade her otherwise. She also will not engage with medical professionals.

Soooo, I end up worrying myself to death and trying to get her help and doing everything I can from where I am, but I feel like I’m fighting her as well as the system a lot of the time, and in the end, it’s her she choice not to live a longer more independent healthier life.

She chooses to do risky things, to refuse all outside help except when it becomes an emergency, and to live a lonely miserable existence where she can’t cope and is slowly killing herself... and then is proved right that her independence will eventually be taken away... sigh.

It’s so frustrating and upsetting. But I have learnt that even if I just call, am visible somewhere, hospital and/ or social services staff can twist it into me being available to be a full time carer, no matter what they’ve been told.

The system is broken, and until elderly social care is fixed, people have no choice but to go through hospitals to force ss to act, or to tell ss that they won’t and can’t look after their elderly parents. It’s horrible for everyone, don’t blame the people going through it, fix the system.

Sorry, most massive rant ever!!!

wellthisisshit that's awful. And would be unbelievable if so many of us hadn't experienced similar and we know what you are saying is absolutely true. for you.

Please tell me you lodged a series of complaints after that wellthisishit?

If not, please cut and paste your message into an email and send to the chief exec of the Trust that manages the hospital your mother was 'treated' in.

Truly dreadful, wellthisisshit. I hope you made a major complaint.
What a nightmare for you.

Must have been so lucky when my mother broke a hip at 91 or 2 - she had bad dementia on top - the hospital was very good, and since she was going back to her care home, no need to involve SS.

From all I've ever heard, social workers are often all too eager to believe someone who says they're fine, they can manage at home, etc. even when that hasn't been the case for ages. My mother still honestly thought she could manage everything, when she could no longer even make herself a cup of tea.

Apologies to those to whom this doesn't apply, but too many SWs, even if they've supposedly had training, are still pretty clueless about the practical realities of dementia. E.g. they will say that if someone can't remember to take medication, all you need to do is write it reminders for them, or ring to remind them. They can't seem to grasp that very poor short term memory means that neither of these is remotely likely to work.

Too many GPs are similarly pretty clueless.
Though to be entirely fair, I'm not sure anyone truly realises what it means in practice, unless they've lived with it. I know dh and I hadn't a clue when we blithely took FiL to live with us - 'Just getting more forgetful - how hard can it be?'

But then we were not professionals presuming to advise other people.

We seem to have a better system in Australia than what wellthisisshit went through. My dad was found on the floor in his room at the home and taken to emergency. He was GCS 8 (non responsive to pain stimulus) for a good 10 hours before finally coming around. Well apparently we have a system that when an elderly person is admitted to emergency, the aged care department in the hospital is notified. Because he's in a government run home, the lady saw his name and knew who he was and had actually just seen him at the home that week. She was great to talk to attending staff about his usual state and how he was earlier in the week. Having dementia is really hard and he had to stay overnight. His aged care worker and her boss arranged a secure place for him and a one on one nurse for his whole stay as he's a wanderer and always on the move. Emergency staff were so wonderful as well. Could not have been happier with how the hospital handled everything.

Op, just saw your post about your mum being pretty bad and it being dismissed as pain. I know with my dad there's a link between pain and behaviour. If he's in pain, he gets very agitated. I believe it's pretty common in people with dementia.

OP I hope some care package will be sorted soon.
I have 2 elders with dementia DF & DFIL. One was in hospital recently after a fall & I & DB took turns to stay nights. Very difficult but the hospital were grateful not to have him calling out through the night. Neither of us could look after either father full time. It was only that the stay was Fri-Sun that made it feasible for us as our partners took over looking after our various DC etc.
We were lucky enough to have a rehab person visit DF at home on Monday & lots of adaptations fitted by Wednesday; I now realise how lucky we were!!

@WellThisIsShit Absolutely horrifying.

UPDATE : I went to the hospital today with the intention of bringing my mum home. It turns out that they do not think its safe for her to come home. They want her to go to assessment in a cottage hospital to assess mental health and where to go.

My heart broke - my mother was being a bitch. Kicked a nurse and has possibly broke her foot. But she is my mum and i do love her.

This is all to real now. She is not going to a care home.

But if they think it's not safe for her now they've seen her, doesn't that mean that she isn't safe? Just as you've been telling us?

She's hurt a nurse. What if she hurts you? And you can't stop her from then hurting herself?

That assessment in the cottage hospital might result in long term residential care - or it could be that they are then able to make arrangements to support you in looking after her at home, along with ensuring that withdrawals from long term tramadol overuse are managed safely. Taking her away could be the worst thing right now for both of you.

It doesn't mean you love her any the less. It means you love her enough to make sure she gets what she actually needs in terms of care and protection, rather than what you think she needs or you should be able to provide.

They have to work in her best interests now, not what you wish you could do. And they have decided, upon observing her for a period that it is not in her best interests to stay with you, but that she needs a greater period of observation, assessment and treatment before a longer term decision is made.

You were at the end of your tether at the beginning of your thread precisely because you are unable to be a nurse, jailer, friend, daughter, cook, cleaner, pharmacist and maid. And punchbag. Don't take away her opportunity to get the care she actually needs now out of love and guilt and obligation.

Let them do their job.

I know mitzik - you are right. It is good that they are taking things seriously xxx

Cottage hospitals are usually much nicer environments than a busy hospital ward, and hopefully they will be far better equipped to observe and assess.

Let someone else take some of the strain for a bit