What does "care package" actually mean?

[PinotPony]

My elderly uncle is currently in hospital following a fall. He is confused and thinks the nurses are trying to poison him so keeps pulling his iv out.

My aunt cannot cope with him at home. His mobility is very poor but he refuses to use a Walker. He often doesn't make it to the toilet in time. He is quite belligerent and insists that he can do things for himself. His bedroom is upstairs so she has to help him up and down. My aunt is not strong enough to push his wheelchair so my dad will sometimes take his brother out for a walk.

My aunt is coming to the realisation that she does not want him to return home when he is discharged. She is at the end of her tether, absolutely exhausted. Their children support her and intend to talk to him about it together.

She has called SS but they won't get involved until he is medically fit for discharge. The hospital say he'll need a "care package"... but are really vague about it. Does this just mean care at home? I really don't think carers coming into the home will be enough. My poor aunt would still have to deal with him the rest of the time. He needs 24 hour care.

I'd be grateful for any advice on the steps we take to get him into a care home. Surely we don't wait until he's unnecessarily taking up an nhs hospital bed before setting this up?!

This is in contradiction of the usual advice, for example Age UK:

“Will my home have to be included in the means test?

In some situations, your home won't be taken into account in the means test. There are a few circumstances where this applies:

If you need short-term or temporary care in a care home, your home won't be in the means test.

If your care home is permanent, it won't be counted if it's still occupied by:

your partner or former partner, unless they are estranged from you
your estranged or divorced partner IF they are also a lone parent
a relative who is aged 60 or over
a relative who is disabled
a child of yours aged under 18”

PinotPony, there are things called cannula sleeves. They cover the cannula but have safe things to fiddle with and they work well for people with dementia who tend to pull their cannula out. I make them and donate them to the local hospital where the nurses are always pleased to receive them.
When my mother had dementia, I had a dreadful time with SS. They had someone go to her house to assess if she was well enough to be discharged from hospital. The test was that if she could make a piece of toast and a cup of tea, she was well enough to be discharged. She couldn't do it so the assessor helped her and then said she was fine!

Your aunt needs to make clear she cannot assist with his physical care anymore and needs respite from it all sometimes.

I would leave the ‘sometimes’ out, if it were me.

the hospital discharge system has changed vastly recently and a lot of the advice above is well meaning but out of date.

in many areas the hospital rather than social services now arrange discharge. This is under a system called discharge to assess and there are a number of different pathways - the two most relevant to this situation is the pathway that is a discharge home with a care package and a discharge to a care home.

in both scenarios the hospital are responsible for funding it and arranging it and social services will have an agreed timescale to become involved after discharge. This is usually around 4 weeks if the discharge is to a care home and a few days to a few weeks if the discharge is home.

the discharge home pathway will involve a team of OTs/physios/carers etc doing a rapid assessment of the person at home to ensure it is safe for them to be at home. If it isn't they get returned to hospital.

the discharge to a care home pathway is basically the NHS moving people from acute hospital beds into 'rehab' beds in care homes to await the assessments.

this will look at if they are eventually returning home with a social services package of care, or if they are eligible for NHS funded care or social services funded care in a care home permanently. They officially remain NHS patients during this decision making period, they just aren't in the hospital any more.

if OPs aunt says she can't have him home it's likely he will go to a care home on a discharge to assess pathway and it will all be worked out in the longer term from there,

the house is safe for as long as aunt is living in it.

They are being vague because it is an individual thing.

There will be an assessment of his needs and any equipment eg for my mother it included installing a chair lift. That my mother broke her wrist from jumping of to answer the phone.

It can mean carers in several times a day, meals on wheels, equipment or it can mean a care home.

Thank you for this information

@mummyh2016

Being unable to walk OP won't normally qualify you for a care home place though. SS answer will be to move the bed downstairs, supply a commode and then send carers in 4 x a day.
I'm not saying it to be snipy, it's just about managing expectations. Prepare for him being sent home with carers and if he does get offered a place then treat it as a bonus. IME my DH nan was refused a place in 2019 and she was far worse than my Nan was in 2015 when she was given a place quite easily.

It's not just that he can't walk. There's a significant falls risk. He is so bloody minded he tries to do it alone when he can't.

Last month he fell at home and my aunt had to find ask a stranger (a builder working down the road) to help get him up.

I get your frustrations but even so it doesn't guarantee a care home place in my experience. DH nan was the same, ambulances were called at least twice a week (if not more) to pick her up when she'd fallen. They'd just pick her up and pop her back in bed. Despite this going on for months she was still refused a care home place. Realistically though I suppose falls are still an issue even in a care home as they can't be watched 24/7.

When they do the assessment to discharge him with a care package, they should talk to your aunt about circumstances at home. They might think your uncle is well enough to answer correctly for himself. Make sure that your aunt is included. She must talk about his worst day. Not his average day. Think of all the things that go wrong and imagine them all happening on the same day. This sounds easy but it's hard not to brush over things and say, I'll be all right. Be with her and correct her if she falls into that pattern. It's what SS and nhs rely on. Relatives keeping everything ticking over.
Use the opportunity of him going into a home to find a nice one you think he'd like to be in permanently. This is a good chance for both him and your aunt to try it out.

Latest update is that he will be ready for discharge "in a few weeks", whatever that means.

Two physios tried to get him out of bed today and he couldn't stand. They gave up after 20 minutes. Much swearing and anger from him.

Current plan from SS is that he will go home with a care package - a hospital bed in his first floor room, a hoist (which only the carers can use) and a commode. Quite how my aunt is expected to get him out of bed onto the commode in the middle of the night or manage the stairs hasn't been explained.

Unfortunately she is not the type of person to make a fuss and will not push back, even though she is exhausted. I've told her not to agree to anything without her children being present.

We're going to see how the next few weeks pan out, although I'll be surprised if any amount of physio improves his mobility.

If it came to it, she'd be able to finance a private care home at £1k per week by releasing some equity from their property. That would obviously avoid the battle with SS...

This is a really tough call for the authorities though as he will do the same in a care home. This might seem mean, but has anyone properly yelled at him over this? I am not naturally inclined to shout at anyone so on the couple of occasions I've done it to my olds, they responded by doing as they were told.

I'm guessing from your posts, they aren't self funding?

I was also told I'd have to sort bed, commode, strip wash for mum downstairs before I put her in respite care.

Oh cross post

if she can do that, I would start looking for a care home place now. I don't know how it works while she still lives in the house though - there might be alternatives to equity release.

A close relation was discharged home with a 'care package'. Loads of different carers four times a day, gave his spouse Covid. Bedbound upstairs for weeks. GP wouldn't visit him at home. Family is still traumatised by this gross failure. He was readmitted to hospital six weeks later and it was found he had a broken leg, missed first time round. What happens is not always what is supposed to happen.

The reality is he won’t be using the commode at night, it’ll be a urinal or a conveen in bed. He will have to open his bowels in bed if he needs to go when the carers aren’t there. If he tries to get out of bed and falls the Ambulance service will pick him up and put him back. Depending on where they live if they are lucky there maybe availability for two carers (need two for a hoist) four times a day. He won’t be coming downstairs, he will live in that room.

Be very careful about equity release, some companies are very dodgy and families have been left owing money due to massive interest charges.

If I were your aunt and she is truly exhausted I would ask social services who is going to do his shopping, washing of clothes, cooking etc, as if he comes home she will be moving out immediately. And back her up on this, even if it's not likely.

My bil's mother got released from hospital after dehydration and falls and she was entitled to 5 carers visits. 4 during the day and 1 in the night for toileting. So that might become help.
However, she's had 4 admissions to hospital in 2 months. First time she fell and so the ambulance men came, sat her in a chair and went to leave. And her daughter was saying, but she can't walk and she lives alone. They said there was nothing they could do. Eventually they relented to see if she could walk but she kept collapsing so they took her in. She's since really hurt herself with these falls. The discharge team still tried to discharge her back to her own home. Until even the doctor intervened and say she's been admitted her 4 times and shes not going to stop falling.
You really do have to fight for everything. No one realises how draining it is dealing with SS and NHS over care until you're caught up in it.

Marsha do you mind if I ask the circumstances of the fall?

at the time of mum's fall, I didn't really know what had happened but the paramedics examined her and wanted to take her in right away.

Current plan from SS is that he will go home with a care package - a hospital bed in his first floor room, a hoist (which only the carers can use) and a commode. Quite how my aunt is expected to get him out of bed onto the commode in the middle of the night or manage the stairs hasn't been explained

are you sure it's social services who are saying that? Even under the old style hospital discharge where it's social services who assess they would still usually absolutely refuse to do an assessment until all physio etc had been completed and the person was as ready as they were going to be to go anywhere.

She had several falls. She won't use her walking frame because it's a small flat. First time, I think she'd messed with her medication and she kept getting dehydrated. She'd been on the floor for quite a long time before anyone found her and she couldn't walk. Like I said, the ambulance men didn't check if she could walk and would have just left her.
Second time, I don't know. But the third time, she fell and injured her arm really badly. Dragged all the skin off - you know how frail their skin is and how it tears so easily. She got taken in and had it dressed. Was on on a drip again, so dehydrated and needed antibiotics.
The final time the carer found her in the morning collapsed again. She wouldn't eat, drink, take medicine, go to the toilet. Etc. Back to A&E. She'd been in there about 12 hrs and her daughter was sat with her and wondered about a funny smell. It was her injured arm. No one had checked the bandages and it was starting to smell.
So it's just general lack of taking care of herself and getting weaker. She has some dementia but not much. She can easily make herself understood but she just says she fell.

Managing with carers is really tricky. 4 times a day will just be for 15 minutes a time essentially they have time to whizz in, help him with toiletting/ clean him up, medication and paperwork. My friend decided to try caring and was shadowing another employee. 8 hour shift took 9.5 without breaks to try and catch up and was told she wouldn't be paid for the additional time. It's rubbish for carers and those in need of care.

Will your Uncle agree to go into a care home @PinotPony ?

Marsha blimey, that's shocking that they didn't try to establish circumstances of fall etc

Tip of the iceberg, Emma. She is partly to blame but she's 92 with the start of dementia. She's fortunate that she has her daughter about to speak up but what happens if people are on their own? Those ambulance guys would just have left her in a chair unable to walk.

@MarshaMelrose That's shocking. I'm so sorry to hear that she's been through that. Poor woman.

Probably not.... he is quite deluded about his condition. Insists there is nothing wrong with him and that he'll be walking out of hospital next week.

His family will need to sit down with him and tell him some hard truths.