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

My advice is keep pushing back hard about the care package etc. I went through all of this with my mother at the beginning of the year. The hospital social worker was a liar there is no other word for it. I had no choice but to resort to email as he was saying the exact opposite when telling others the family's views. Then when mum was finally out in bed based reablement and it was clear to DF and me that a care home was her best option, the County Council team were telling us she didn't need nursing care. We left that meeting to find mum being fed by one of the care team staff, having just been assured she was "doing really well and just needed a bit of prompting" Funny how the new home came out and assessed her as needing nursing care and she now gets some state funding to help with nursing costs. I've never had to be so forceful in my life as dealing with them and I'm no shrinking violet, believe me! Good luck with all of this. They just want rid so they get the bed back and they're empty promises once she's no longer their responsibility. My DM is tricky and abusive (at best) so I do understand where you're coming from.

just ben through this op.and im so sorry.
all i can offer is PUSH.PUSH PUSH PUSH AND DO NOT BACK DOWN.
if they can they will offer little or nothing! and the less you push or backdown or dont keep getting in touch the more they will slack.
i dont know or care whos fault this is.probably not their own. but they are shockingly shit at this.and its appaling and makes caring for your loved oen often in illness or last stages of life intolerable.and puts so much strain on everyone.
it almost broke us many a time.so stick with it and keep yourself safe and ticking over too.
you have much support here.and big hugs.your doing nyour best hun.big big big hugs.
do you have anyone to sit with you and support you.someone to bounce things off or just hold you tight.
do take care.i no this must be so hard.
you can do it.take moments to sit.breathe.rest and eat a choccy and a cup of tea.every moment you can if you can.xx

Re medication, well before her dementia was bad enough to need a care home, my mother was allocated a daily visit to make sure she took her Alzheimer's medication.

However, since according to her there was nothing wrong with her, and therefore she wasn't on any medication, she consistently refused to allow the carer (in her eyes some random stranger) into the house.
Written reminders or phone calls would have been useless, since her short term memory was already around zero, so she'd forget whatever anyone said almost immediately.

Luckily she wasn't on any other meds and since the Alzh. med. seemed to make very little difference, it didn't much matter if it was stopped.

Refusal to allow carers into the house is often a real problem. You can arrange them all you like, but they can't force an entry. We had this problem with an aunt of dh's - she didn't even have dementia, was just incredibly stubborn - and didn't want to pay, though she could well afford to. Dh arranged them for her - she sent them packing.
In the end it took a crisis to get her the help she needed - which by then was 24/7 residential care.

I wrote my post before op's update about her mother missing her meds & popping tramadol & paracetamol like smarties.

Your mom must be in quite a lot of pain. I'm relieved to read that she now has a morphine patch. Has she stopped taking tramadol & paracetamol?

• @prequelle*.
  my understanding is that they have to sort of go through stages, so offer 2 daily visits, then 3 daily visits etc before they'll even consider a 24 hour setting - is this true? Might be helpful for OP to know

If a patient is palliative & discharged home with two visits per day, then they will automatically be referred to the district nurse team. They are then re-assessed by the district nurse and the case for number of visits is either increased/decreased dependent upon the patient's needs and engagement with services. Yes, the recommendation is a phased step up in visits. But a patient could go from two visits to 24hr care if there is a rapid deterioration in health. Or all care could be removed if non-engagement is happening. It's determined on a case by case basis.

Everybody needs to know there is now a very very strong push for patients to be discharged early and care to be delivered at home. Not in care homes or hospital. I must stress that each trust are implementing this approach differently.

I strongly urge that the op seek involvement from adult mental health team before her mom is discharged. I suggest that you write down everything you want to discuss before you meet so you don't forget.

they don't assist in toilet needs-mine just needs help standing up and they didn't dress DM yesterday which I thought was part of the plan

Christ isn't that part of the main point of carers? Would they jusr leave her soiled then do you think?

Crotchety so sorry for your experience. My dad's consultant at the hospital admitted that they just want the bed back, and ss don't want to have to pay so will also push back. It was all fine until we revealed he'd probsbly be self funding, then all the pleasantries and talk of him needing a lot of care changed to "he's actually fine". This was the day after he tried to escape the hospital and punched one of the nurses. After this they still said he was fine. Fuckers.

Then we discovered the agreed care package hadn't even been signed off and was going to drop to 2 visits a day rather than 4, and other promises wouldn't transpire such as adapting the home. just as we were about to agree to him coming home. Back to bed blocking until that was sorted. I think it took about 2 months. Was very stressful.

Thats how it works here too nursebuttercup. Although we don't have the district nurse involvement (except if CHC being discussed) we have a specialised community team for the purpose. Thanks for the info!

Probably not be self funding rather

@prequelle - you are mostly right about that social services will not go straight for a care home without trialling a care package first. There is a huge local and national initiative being rolled out called 'Home First', where they aim to make no long term decisions about patients social care needs in hospital. In the majority of cases this is completely the right thing to do, but there are some exceptions. I also feel you're being attacked purely for giving realistic information....this is unfortunately the way the health and social care system is set up. I think having realistic advice is key here.

I also don't think an A&E doctor is the right person to assess social needs based on a 10 minute review. People are more complex than that and to be honest he/ she probably has limited knowledge of the realities of what is available.

I think OP you need to be really clear what you want and need from the care package, as this will be a point of strength to discuss with social services. The most they will be able to offer is most likely x4 visits a day which will probably a maximum of one hour. BUT there will need to be specific needs which need to be met to qualify for this.

A social workers reality is often trying to explain why relatives unrealistic expectations can't be met, they are used to dealing with this. Which is why you need to be SO clear going in as to what her social needs are. If they decline for whatever reason you can always pay privately for a care package to ease your mind?

Hang in there OP - and don't back down
While you think admission to a home would be a disaster, it might give you a breathing space and allow time for your mum to be properly assessed.
Please don't listen to people criticising you for insisting on care to be put in place before discharge - its the only way you will get any help for your mum. If they can send her home with a vague promise that you'll get some support they will do so. My frail demented dad was discharged twice because he said it was safe to do so because his daughter would look after him. Which would have been lovely but he was on the south coast of England and I live in Scotland. Front line staff are trying to conserve scarce resources and are very quick, in my opinion, to state that an elderly person has capacity and has refused help so there's nothing further to be done.

You can't just (in my experience anyway) google what services are available as they aren't listed in one place, and getting access to them isn't a clear path by any means - and can change fairly frequently.

My parents live at home. Mum has fronto temporal dementia, diabetes, and mobility issues. Dad has heart failure, kidney failure, diabetes, leg ulcers and a zillion other issues.
They have enough money that they have to pay for care - in their area that means that social services did come and assess them after a crisis but won't arrange/co-ordinate care or follow up to make sure it is still appropriate.
Mum has district nurse visits to do her insulin, but dad has to go to the surgery (2 miles away on his mobility scooter as he can't walk from the disabled parking spaces into the surgery) for ulcer dressings and everything else. Then the nurses have a go at him for leaving mum for a couple of hours to do this.
They used to have integrated support from a team set up to support those at risk of frequent admissions, and that was brilliant. Until it was shut down.
The only time I have been able to persuade dad to accept more care is when he or mum have been in hospital and someone there tells them they must have more to get home. Its incredibly hard, but I have been on the phone to hospital social workers telling them that I believe them to be at risk if discharged without support in place. Even when they know what the situation is, dad has been discharged late at night with no notification to me or their carer - and on one occasion this meant my incredibly frail dad slept overnight in the shed as he couldn't get in. The hospital transport didn't wait to see if he could get in
My sympathy OP, its a bloody minefield trying to make them accept the care they need, let alone get that care provided

francis you are trying to continue an argument that I have repeatedly said I do not want to continue. Absolutely nowhere have I wrote things that are false and passed them off as facts. Everything I have written is true and backed up by data

I am a nurse. I know just how dangerous hospitals can be for frail people.

Do you know why may people fall less? Because they don't move as much. They stay lied in bed or sat in chairs, or they are even encouraged to because theyve been identified as high falls risk and people cant be there to watch them all the time (very sadly). They lose their confidence because walking up and down a ward can be daunting so they request the use of commodes. They move less and each day they lose a percentage of their strength and mobility. They lose their confidence. They get a ten minute physio visit if that because the service is stretched. Theyre then at risk of pressure ulcers, chest infections is the big one. Hospital acquired pnuemonia happens again and again, can happen as a result of lack of mobilisation, and it kills. On the flip side, others are at higher risk of falls because they are confused, wandersome etc and because of the strange environment they cannot mobilise as safely as they could at home. This is especially true for night time.

Cognitively, many do not talk to anyone. Where at home they would be watching tv, maybe phoning people, here they're often sat in their chair staring at a blank wall and then dosing the rest of the day. Thats not stimulating. Even being able to watch tv all day is better than that.

You can challenge me on any of this because as part of research I was involved in I completed a meta-anaysis of the data. I'm very active in campaigns like PJ Paralysis and getting people the care in the correct and safest setting. I know what I'm talking about when it comes to safety in hospitals. I understand you can only see it from your point of view, that's understandable, but do not repeatedly call me a liar when you're faced with information that you just don't like to accept.

Again, for the 3rd time I would ask you to leave me alone so OP can get support. Thats all I'm saying to you now, I'm not going to bite anymore. Pointless.

I also feel you're being attacked purely for giving realistic information....this is unfortunately the way the health and social care system is set up. I think having realistic advice is key here

Thankyou Pondlife

You're welcome @prequelle. I would also like to defend you further by reiterating how dangerous hospitals are for the elderly for the exact reasons you have listed. Just look up #endpjparalysis; Get up get dressed, keep moving; and hospital acquired deconditioning!
Hospital stays are dangerous when they aren't necessary for more reasons than the fact they are rife with infection!

Unfortunately though, hospital stays are essential in a lot of cases due to the handling of the situation by the hospital and ss. No one who knows the score would allow their loved one to leave hospital without being 100% certain of the care to be provided, signed and sealed, but it's a vicious circle when they won't commit to care before the person leaves the hospital. No one wants to bed block but it's a necessary evil in many cases. The answer isn't to be emotive and suggest the family are creating more problems for the person by standing their ground.

That's another thing op, they will get very emotive with you, I had some foul things said to me.

Thanks again pond. I think if people realised the extent of what we mean they would look at hospitalization in a whole new light. We have a long way to go with making people aware, we aren't getting there yet. Programmes like endpjparalysis are doing good it seems- I haven't been roped into coming in in my pjs for the cause yet tho ha

Fwiw I knew that hospital might be making dad worse, I also knew that once he was discharged that would be it, and he'd probably kill himself or my mum. So it was the lesser of two evils. He was far safer in the hospital. That is a fact.

Also, just to comment on a pp, they (the main sw) said the care visits would be for up to an hour. One was sent out in error, we spoke to him and he looked really puzzled when we said it was good they'd be there for an hour and he said the max is an hour, but they are only given 20 mins per visit. 20 mins.

Appreciate it might differ in other areas. But still, read the small print. up to an hour.

I think it's something you should absolutely weigh up in your head isn't it, a risk assessment. As long as people are aware of the risks that's the important thing, informed decisions and all that.

Absolutely, though I feel for people who believe the hospital and ss at face value. If I hadn't known how bad dad was, say I didn't live close etc, we'd have agreed for him to come home based on their, to be frank, lies. Mum was in total denial at the start and this was played on massively by the team involved, at one point cutting me out completely and railroading mum into accepting him home by getting very emotive with her.

Again I appreciate this doesn't happen to everyone, although a visit to the Alzheimer's message board will reveal this is all too common. As you can tell it's something I feel really strongly about!

OP don't feel remotely guilty. You need the care package in place for you and your mother.

“I do wonder though why people needed the hospital to do it for them and take up a hospital bed when it can all be done in the community

That only works if they actually do assess in the community. We had to resort to the A&E route after 5 months and 14 cancelled/rearranged appointments in the community.

We have this in our area, it's a load of shite. Faceless, nameless people on the other end of a phone, lying and denying. We're two years in and no further on, I've actually gone past the breakdown stage, now I'm just numb. My greatest wish for all the professionals involved is that they, and their families, live very long lives.

It's the same here. They are marginally ok at telling you what you need to know if you ask a specific question, but if you need anything else they are hopeless.

My MIL, 75 and frail, had been taking FIL (considerably bigger and heavier than her) in his wheelchair to the health centre twice a week for 3 months for BP and bloods when, despite her asking for help and explaining how difficult it was every time, it emerged the district nurses could have come to the house.

Apparently if she'd just asked "Can we please have the district nurses?" then that would have been done, but asking "Is there any help available as I'm reall struggling?" wasn't specific enough.

In my area, they have a system where the patient is sent home under a hospital care team for a fortnight while LA community care is put in place.

In our case, the patient needed readmitting during the 2 week period, and subsequently died in hospital, but in other circumstances would free acute beds and provide a breathing-space.

Relatives do need to keep an eye on the situation, because the care team in our case was not v reliable. I wasn't a relative, just a friend, and it was only due to me that she was readmitted. The carers seemed to have a v low bar when it came to deciding whether she was well enough to be left alone between visits.

Soon I don't think you have have any idea what it's like trying to care for a relative with serious MH and physical issues. It's really not a job for amateurs, no matter how willing.

Also, it's very sad the number of people on here who think it's ok to abandon their parents in hospital because it's challenging looking after them. One day, you may be in the same position. I wonder how you would feel if your children did the same to you?
What happened to family supporting each other?

This made me feel really angry.

My parents had been looking after my maternal grandad with no help from mum's siblings, who all lived locally. My parents health suffered badly, and grandad refused other offers of help.

It got to the point of having to call out an ambulance to lift grandad when he fell in the night because my parents couldn't lift him between them due to their own health.

My brother was overseas, and I was working ft with young children so my assistance was limited, but I did what I could.

In the end, my parents did what they had been advised by a SW. They withdrew their permission for him to live with them, to force a proper assessment.

They weren't abandoning him, they were doing their best to get him proper care, care that they simply could no longer provide due to their own health.

People who spout these sort of comments need to pull their heads from their arses and grow up.

I so hope you both get the help so desperately needed.

I'm sorry OP. I've no idea how to help beyond recommending that you keep calling SS, and talking to the hospital team managing her care.

My dad died 14 years ago last Saturday from a Acute Aortic Aneurysm, it's a time bomb waiting to go off and for that you have my sympathies.