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

Im the position of having 2 carers x 4 times a day for the past 5+ years. I live alone and am often bedbound, 95% housebound.

You cant cope - keep repeating that. Tell everyone you can that and ask them to put on the notes. This is dangerous to your mum to let her home like this.

My package is based on my physical, neurological and mental health needs. (MH has only tagged on as apart from seeing a cpn monthly / psych 6 months - that the lot).

The longest calls are 20 mins and other calls are 15, there are times we cant fit in changing bed and me (incontinence) and food in the same call. Its microwave meals only, sandwiches or toast.

I've been discharged in the past when I could barely speak and had little use of my whole body, could barely hold my head up. It was hell as I went home on the transport ambulance they arranged and was put in bed, the on-call consultant deemed I didn't need any care.

As was leaving the ward, the nurses had made bets about how long it would be till I was back and what damage would have occured, I couldn't even feed myself much less anything else.

The GP called the next day and had a complete meltdown as I was lying in my own incontinence, dehydrated, starving and even more ill in the first place. I couldn't hold a drink to get it even it was beside me.

She got me back to hospital asap after speaking to the main consultant I was under, neurology didn't have any actual beds in the hospital so I was in a medical bed and the medical consultant considered my condition to be mental whereas neurology considered it to be neurological and had recommended a full care package be set up which didn't happen at first, friends left me a load of pj stuff and I told them to walk away and take my house keys with them.

So no one to pick up the pieces, a supportive dr who liaised with social services with input from GP, and lots of assessments followed psych, OT, SALT, physio, other medical disciplines, tests and finally a multidisciplinary meeting and the care package that would help alleviate things for me. The hospital SW was also a valuable resource too. There will be one attached to the ward even A&E although they should get a consult from pallative care and their input.

This has been re-assessed many times over the years. Things are slightly better than the original admission but a good part of each month I am right back there.

The girls help me meet basic personal care, administer medication, food (cereal /toast/sandwiches / ready meal) and generally keep an eye on me from falls, mental health etc

So op, ask for all assessments OT, physio, psych, psychology, a home assessment, district nursing.

Don't leave till its all in place. Last year I had an emergency admission via a&E as new potentially dangerous symptoms, anyhow they turned out not to be what was initially feared (cauda equina was the fear), but it took a while to work out what was actually going on.

Anyway after a couple of weeks in hospital when they considered could do no more and physio had done all they could, time was going to help the rest, they sent me home to the care package with community physio input.

Unfortunately for me, they referred to the wrong physio team so after 7 weeks I found this out so the GP then had to do a referral which then went to the correct team, however, there was a 4-month waiting list to see them urgently.

So you cant offer help, you are working 10 hours a day, no shopping there will be a way around it otherwise the daughter will be seen to sort shopping and when dropping it off you can do x, y and z and your time will be more and more drawn in.

I've also spent time in a nursing home while providers were being changed as one company couldn't cope with the constant flucations in my condition. Im early 40s now so not elderly but have a full understanding of how this is hard for all concerned and asking family and friends to step away was hard for us all, I knew I needed help and if there was someone to pick up the pieces, it would be thrust upon them.

We have had bed blocking here as care packages could not be put in place. Agencies refused to take council clients as the cost of providing the service exceeded the payments. The council had to employ their own carers. In the short term they put people into nursing homes to be assessed for the right care package. This freed up the hospital beds but provided a better form of assessment for long term care at home.

This might be the solution for your dm with regular carer visits. Good luck for today.

So if possible when asking for assessments, get the names of who she has seen and their title so you know exactly who you are dealing with.

Then when you have it all and possibly waiting for the MDT meeting, send a copy of a letter to each and all, possibly hand delivered and ask whoever it is dropped with to sign that they have received it and undertake to pass it on before the meeting time to the intended party. This tries to ensure that your concerns are recorded by all parties whether they want to know or not.

The letter details your concerns, outlines it all and how you cannot cope to take the fallout and that you are not willing to and she needs help that you cannot give and that in the event of not giving care to your mum the impacts on you and your health (physical and mental) and that you cannot cope. (keep repeating it)

Good luck

En route to hospital. Apparently there is a multidisciplinary meeting at two.

Not read all responses.

Respite care and assessment might be the way forward. Hospital isnt the right place and long term i need help at home.

Its so complex ill update.

Thankyou

CMOTdribbler - my mum had early onset fronto temporal dementia brought on by a head injury, so you have my sympathies Thankfully , because it was early onset, it was relatively rapid in progressing and she died 7 years ago . My dad did put her into a home, as she kept breaking bones through falling; she didn't understand that she couldn't balance well and she had to be watched literally 24 hours a day, including during the night, as she would wake up, get out out of bed and fall.

Record the meeting op, it's absolutely fine to do so as it's just for your information.

Can't stress that enough - record it.

Good luck. Do not accept discharge then assessment, it won't happen.

That should've been @CMOTdibbler

@TheoriginalLEM I’m sure it’s with kindness but you’ve been given some incorrect advice here. I’m an experienced social worker with a background in working with older people. Please drop me a PM if you need any advice. Obviously nobody can comment if your mum has capacity to make decisions about her care. However, I am happy to offer advice and also show you where to access information to ensure you understand what support is available for both of you. Take care.

Haven't read through the entire post-sorry-but a respite bed sounds like an excellent idea and I do hope they arrange that OP.

On the social side, yes it is a nightmare, but if she's been assessed by either the older adults mental health team or by someone specialising in elderly medicine and is documented to have fluctuating or a lack of capacity it will be an easier battle for you. Best of luck.

Fingers crossed OP

Wow, lots of things coming back to me now, dementia related but might be helpful op - the SW used to always time chats with my dad around mid morning, when he was in a good mood and fairly compliant so she'd judge him to have capacity. So be alert for tactics like that.

They had a half way kind of place in our area arranged by social services but it didn't suit my mum. However, it gave us some breathing space to get proper involvement from social services- who were bloody brilliant, btw. It got Mum properly on board with getting adjustments in the house and getting proper benefit entitlement. But we didn't have dementia issues to deal with so she could sort of steer (be steered) without too much resistance.

Good luck OP, just be aware that even if get a care package agreed it's not a done deal. We were unable to get care for my MIL as her local council operated a daft bidding system whereby the care package is placed on a portal and care providers bid (or not) to deliver the care. As MIL lived in a tiny village off the beaten track we had no takers are therefore no care.

Few key phrases to use, you are suffering from carer stress and caring for your mother would result in a family relationship breakdown. They have to listen to those phrases and do something, this should make it a duty issue

Prequelle
"They didn't just suddenly become that way though did they. They didn't one day wake up immobile and incontinent and you decided to bring them to a&e.

I'm not saying all this to be an arse, but bringing them into the hospital puts frail people like that at risk of infections and falls. It also risks worsening their mobility because they spend much more time in bed, and they lose their independence very quickly because of learned helplessness. Deconditioning is a very real and dangerous thing. It also affects them cognitively because there's no stimulation "

I don't want to de-rail the OP's thread with my own particular difficulties but really....... have you any experience of trying t get services and support for someone who is not 'yet' acute and in need?

Of course it doesn't happen over night. It starts to creep up...no one helps. The there is an incident - say a fall. and inability to get up due to sudden weakness...the ambulance crew suspect some underlying issue, neuro or infection, and take to hospital. Weakness continues, hospital advise 'not mobilising well'. Not well enough to get to the toilet in time. Other infirmities (creeping up) preclude reliable use of a bottle. Hospital discharge, admitting that there will be no community assessment for a week.

Family spend all day looking for help - none available - GP refers patient back to hospital. Hospital agrees (now that they have been admitted, rather than left on a trolley in A&E for 9 hours) that a care package is very necessary. But can't arrange one, Bat back and forth between SS and NHS - send to a 'halfway house' - where NO therapeutic services are provided - and yes, de-conditioning sets in. I know it is fucking dangerous - we didn't want it to happen!

Family spend hours on phone requesting OT and Physio in order to support the so-called 'enablement package' which is still over the horizon for home.

I used 30% of my annual leave, 150 miles from my home, dealing with all this, doing as much cares as I could myself. I can't use more annual leave - I have a disabled child that needs appointments etc. Oh and not disabled enough for me to get any extra payments, Of course.

I and my siblings spent hours on the phone to GP, Rapid Response. Adult services, NHS services, everyone.

My own child has had operations delayed because whilst our expert and highly expensive consultant team waited in theatre, no bed was available.

WE KNOW.

But seriously, the help is not there. The support is not there. The services are not joined up, SS and the NHS compete to see who can be the last to pick up the tab - and who can blame them when their resources are so stretched?

So, we are not a family who dumps our loved relatives off at Christmas, nor do we share one thought of that mentality, and we don't just bring them into hospital one day because we are too lazy or thoughtless to look for an alternative.

We took FiL home from hospital with us after a major stroke. We had a full care package of 4 visits a day in place, so all seemed okay.

Beware, it later transpired that his discharge notes were a complete work of fiction (for instance they said he could walk and eat solid food when he wads bedbound and on a liquid diet). This led to weeks of phone calls trying to put things right and we spent £1000 on equipment we should have got for free.

We raised this with PALS in November and they are yet to get back to us properly.

Lots of promises and services never materialised; we never got the promised respite stay despite having school age children who were missing out on family time; we never got essential services like a dietician's input, FiL was a skeleton by the time he died.

Having had FiL with us foe four months until he died, well it was tough, though we had some lovely moments. But I wouldn't judge anyone who chose not to do it. We were naïve in many ways. I certainly couldn't have done it for years.

Good luck OP. I feel for you and your mum.

My late mum lived with me for 2 years after a stroke. She had balance/mobility problems and the onset of vascular dementia (at the time undiagnosed). She got more cantankerous and forgetful yet at times was like her old self, especially around my son who was 2 - 4 at the time. Her mental health and mobility deteriorated during that time but then she developed a serious water infection which made her go down hill. The GP tried to get in the intermediate care team to get me some support but there was a delay. After 48 hours of her constantly wanting the toilet and shouting me to help her, getting angry when I said she had just been, not passing any urine for many hours and a couple of falls, she ended up in hospital.

As is the case with vascular dementia a period of illness tends to cause big declines in mental state. After a couple of weeks she was transferred to a local hospital for rehab. She had forgotten how to walk or dress herself without help. The signalling from brain to limbs was not working as it should. She however would not accept she couldn’t walk and kept trying to or getting aggressive when asked not to. There were a couple more falls. The hospital mentioned a care home which shocked me and an mdt meeting was set up but in the meantime she became very ill again with a swallowing problem and was transferred back to the main hospital for treatment. Her mental health deteriorated further and she stopped sleeping and became more and more aggressive. She had yet more falls and was constantly shouting, asking to go home. She was put under dols and moved to a side room with 1:1 care. She was there about 6 weeks (3 months in total).

The hospital arranged a mental health capacity assessment and for a social worker. A mdt meeting and dst assessment was arranged. She had multiple needs - falls risk, mobility, personal care, help with meds (including covert medication when refusing), continence, swallowing, comprehension etc. The social worker was brilliant and sent me lists of care homes to view. By then they would not have let me take her home if I had wanted to. She needed specialist care. At the DST (attended by hospital staff, social worker and me, she was deemed to require dementia nursing care and subsequently granted CHC funding. She moved to a lovely home but still needed 1:1 for most of her waling hours for a vew weeks until they sorted out her medication and she became more settled.

Those saying people should care for parents at home cannot comprehend the difficulties of caring for someone who is suffering from severe dementia or mental health problems. Just visiting mum at times was exhausting. Sometimes in hospital she was like her old self, other time she would have no idea where she was, she would try to leave, she would ask/demand to leave, she would shout and scream, pitch and dig her nails in. She would ask to be passed something from a drawer at home which you didn’t have and she would get so angry. The 1:1 staff used to be so relieved to take a break when I visited which I did everyday - at my sons bedtime Dad would take over and I would go to hospital.

Sorry that was long. I didn’t have power of attorney. It did not matter a jot. Hospital and social services were happy to consult me and take my wishes into account. Good luck OP with getting the help your mum needs. As as many questions as you nee to. Get contact details and ring and ask or email if anything crops up later. Hopefully the hospital will set everything up for you. Hospital is the best place for her to be assessed as they can observe and keep a log which helps a lot.

Just to add although you mum has a history of being difficult, you may find this amplified with her illness especially if dementia is involved. Try not to take it personally. My mum was lovely but set in her ways and would not try new things or tolerate some situations. She began to loose all sense of diplomacy or care for others feelings. Some relatives stopped visiting her when she lived with me because of things she would say. Personality traits were made much worse by her dementia.

Its not about abandoning my mother. Its about me not being able to provide what she needs

And that's exactly why the doctor told you not to walk away without a care package. Believe me they don't say this for no reason, and the reason's that they see what happens when proper arrangement's aren't made

In many ways it's not up to you to "make this happen" - it's up to the hospital who want the bed, along with social services (who'll most certainly back away if they perceive the slightest chance of you stepping up)

Sadly (or not) it doesn't sound as if this situation will continue for long; my own DM died after an aortic aneurysm and I know how instantaneous it can be. But while it does continue, the only thing to do is protect yourself and your own immediate family - because nobody else will do it for you

Wow, lots of things coming back to me now, dementia related but might be helpful op - the SW used to always time chats with my dad around mid morning, when he was in a good mood and fairly compliant so she'd judge him to have capacity. So be alert for tactics like that

Snap!
Oh and casual chats from the staff to other family members. "Oh you look nice today, have you come straight from work?" leading on to "Where do you work, is it local, are you full time?" etc etc. "Do you have any children, how old are they?" all done with a smile.
Then it's recorded you only work 30 hours a week, no young children, so nothing to stop you looking after your elderly relative is there?
They don't want to know that I'm also looking after my elderly FIL who lives 90 minutes away, that hasn't been noted down .

TheOriginalLEM - I am so sorry you are going through this. It is so upsetting and so stressful.

And it is hard on forums like this because different LAs and NHS Trusts call things different names, have different delivery methods (outsourced / externalised etc) different targets etc.

As someone from outside the system it is incredibly hard to navigate. And inevitability you start navigating it when you are upset, under pressure and there is a crisis of some kind.

When my relative finally came home and the carers visits were put in place the poor woman's first introduction to the family was me. sobbing in frustration, fear and distress in the driveway.

And yes the services are not joined up. They are fragmented and contracted out and overstretched and the right hand doesn't know what the left is doing. It is an absolute shambles. Ocasionally a professional visits, makes sympathetic noises, talks a good tale about putting stuff in place and then is never seen or heard from again.

We had a great time of overworked underpaid carers who were fantastic. We had an amazing foreign GP who went over and above and was frankly shocked that the system was so shoddy. We had the odd decent district nurse (when they would come out). The rest were crap.

Worst thing was we live in one health authority and our GP is in another,(county border runs through our village) so basically everything was someone else's problem and computer says no. Basically services underlapped.

Snap again. They found out I lived local with a decent employer, so the SW said I should put in a flex working request, I said sure thing if they cover the salary and an amount for future earnings potential that I'd be losing. Then - why don't I look into those apps where you can buy an alarm that triggers if the person wanders off? Great, what do I do when it triggers and I'm 20 miles away in work? ..then my dp could care for the dc in the evening while I care for my dad after working 9 hours a day. Fab, when do I see my kids?

Before i knew it they'd spoke to mum to arrange a home risk assessment, and bugger me if I wasn't named as the carer! Again, I had to refer them to my recordings and notes confirming I'd never agreed any such thing. The SW was an absolute snake and i hated her and from speaking with others this is all too common. Money first, care second.

For instance respite. We were promised respite, took days to find out who to contact and and pushed for a week in the easter holidays, bearing in mind we had had fil since November and our 12 year old needed a break. No assessments were done, so it couldn't even begin to happen.

We were then talking aboutJuly. Book your holiday they said and hopefully we'll sort it out by then and find somewhere to have him, bearing in mind he needed full nursing. Yes of course we are going to spend thousands of pounds on he off chance you get something sorted out.

"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?"

FUCK RIGHT OFF!

My Mum has dementia, my Dad is recovering from a stroke. Dad was taken to hospital following a fall, I live and work 150 miles away, in a home too small for them to live in too. And I have a disabled child. My parents have hung on independently with the barest minimal help, for years. So after a fall, when he was too weak and wobbly to walk, get to the toilet, get up and down stairs (and my arthritis suffering Mum could not wait on him) too right I did not want him discharged without a care package.

I already use half my weekends driving up and down making meals for the freezer, doing the shopping and arranging aspects of running their household. My sibling does everything else, 3 or 4 times a week or more.

This fiction, from you and Prequelle , that the problem is selfish thoughtless families is the thinking that allows the government to cut and cut and cut services that a generation ago were standard. How will YOU feel when you need this care and your mythologising selfish families means there is none left to turn to?

Respite care and assessment might be the way forward

Sorry - I've just realised which poster you are and how often you've resisted advice to pass some of the responsibility onto the professionals

After all that's been said over many threads I'm sure you already know you won't get the often-promised "respite". I also hope you'll realise that the doctor's advice "not to walk away without a care package" is for good reason and on the basis of long experience

Nobody can force you to do the sensible thing, though; it has to be your decision and I wish you the very best of luck with it