Hospital to Care Home - Confused about Process

[AnneF]

Forgive me if this is rambling but I am exhausted after a year of looking after my mum I'm gridlocked with respect to the next steps.



WHERE IT ALL STARTED

By way of background my mother was admitted to hospital at the very beginning of 2022 after suffering an adverse reaction to her flu and Covid vaccinations which left her with small bleeds and TIA, and some dementia-like symptoms (brain fog, some short term memory problems, loss of risk-aversion). She was discharged from hospital in February with a four times daily care package in her home. I knew this was not going to be workable from the outset because the brain injury has left mum wobbly (dependent on a walking frame).

She still has a good understanding of things but gets confused by complex tasks. This was assessed by the memory clinic in the summer as being ‘mixed atypical, non-vulnerable’. She did well on their tests (which she enjoyed) but the damage was visible on the brain scans.

The weight of giving up work to look after mum, dealing with every aspect of her life and administration, getting her to all of her appointments, the shopping, housework, laundry, and the day-to-day problems inherent to someone with memory issues and a poor care agency, being on call 24/7, never having a day off - has left me broken. I am worried that the next phase (detailed below) could be just as bad if not worse. I feel guilty saying that, because it’s not my mum’s fault.

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THE INEVITABLE HAPPENED

Given the falls this year it was unsurprising that on fifth November Mum had another, we think about half an hour after we had left for the day. For the last year she has not been able to remember how to operate her call technology and thankfully a passer by heard her crying out. By pure luck this person has relatives in the same building and was able to access my mother and alert us via the emergency notes we leave on the table.

A broken hip. Mum is mending in hospital, but her mobility is poor now and she needs help to stand, she can walk several paces with her frame but needs supervision. Up until the small strokes at the beginning of the year which kicked everything off, mum was still quite independent (she is 88) and the new situation is very hard for her emotionally.

We met with the hospital discharge coordinator about a week ago who was very nice and who felt that a residential placement is the only way forward. She also felt it very important that I get my life back so I can be a daughter again.

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HOSPITAL TO CARE HOME – ADVICE PLEASE

I’m unclear as to whether the above-mentioned chat with the discharge coordinator is the ‘needs assessment’ which we understand has to be in place, then a financial assessment. I’ve just had an email from my mother’s community social worker asking if we have any preferences regarding location. I haven’t had an opportunity to fully describe my mother’s needs to anyone (I have H&W POA).

I understand that we should be given a choice of homes and that we can reject the first placement - but then further offers would be withdrawn if we felt they weren’t right for mum? I’m not sure what that means - do they just tell you to go and find somewhere yourself?

I believe the financial assessment will show that mum is under the limit, but I am rummaging through piles of old papers to see if there are any savings she could have forgotten about or anything I can contribute (which could broaden her choices of placement). I understand that if she is just over the upper limit the hospital will put her straight out on the basis that mum is a ‘self-funder’. Then again, as a self funder I presume we would be able to choose the best setting for her needs. But what if you are a self funder for only a couple of months or so?! No care home is going to take you if you can only afford a few weeks - I’ve been out looking at homes and they all want a minimum of two or more years proof that you can pay. My mother does not own her flat.

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UNDERSTANDING TOPUPS

I’m thinking about if I could top up to see if I could get a care home with facilities my mum might benefit from or enjoy. Despite her dementia she’s still wanting to be as active as possible and prior to breaking her hip a month ago enjoyed daycare twice a week, going out with me for tea or lunch, bingo, film shows etc. I realise her dementia will get worse with time (it's been stable since it abruptly started on 2nd January this year) but I would like her to enjoy life for as long as she can.

I’ve been told topups are the difference between the fairly low amount the local authority is likely to offer (I don’t yet know what that figure is) and the full private rate of the room. I live in the south-east and the homes which would meet my mother’s needs all start from around £1600 per week or higher. To confuse matters further I’ve been told that top ups have to be arranged with the local authority and paid to them, not to the care home. I was thinking that if I could afford to pay a top-up in a few months time (when an asset I have can be freed up) I could try and negotiate the figure with the care home now and enter into an agreement to pay them back later on.

I will do anything to make sure my mum is in a good place as I’m quite concerned about the local authority homes I’ve seen so far.

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I’m wondering how much time the hospital is likely to give us to find somewhere for mum. I realise they will want you out as quickly as possible. I am desperate to avoid mum being placed in sub-standard care (as happened with my father who then died of sepsis). I know how much it means to mum to have a green outlook, good company, lots of activities and outings, and a quiet environment. That can be a very tall order with care homes unless you’re loaded.

Any thoughts or advice would be very welcome. I don’t know what to do. I feel that cumulative exhaustion has left me barely able to think clearly and I’m starting to drop the ball.

The reality of my mum going into care is hitting me like a sledgehammer and I’m so scared of not being able to find her somewhere where she will settle and be happy enough.

 

[Jessbow]

If you think she isunder thelimit,call SS and ask for adult care team, and ask their advice as to where they fully fund.
Then get a wriggle on and do a quick flit round- I'd just turn up mid morning/early afternon and talk! Anyon who turns you away may have something to hide. Dont turn up at busy times/meal times

Are you a FB user? Asks in local/town groups where is reccomended. Who has happ well cared for dementia parents where

 

[Baker17]

Forgive me if this is rambling but I am exhausted after a year of looking after my mum I'm gridlocked with respect to the next steps.



WHERE IT ALL STARTED

By way of background my mother was admitted to hospital at the very beginning of 2022 after suffering an adverse reaction to her flu and Covid vaccinations which left her with small bleeds and TIA, and some dementia-like symptoms (brain fog, some short term memory problems, loss of risk-aversion). She was discharged from hospital in February with a four times daily care package in her home. I knew this was not going to be workable from the outset because the brain injury has left mum wobbly (dependent on a walking frame).

She still has a good understanding of things but gets confused by complex tasks. This was assessed by the memory clinic in the summer as being ‘mixed atypical, non-vulnerable’. She did well on their tests (which she enjoyed) but the damage was visible on the brain scans.

The weight of giving up work to look after mum, dealing with every aspect of her life and administration, getting her to all of her appointments, the shopping, housework, laundry, and the day-to-day problems inherent to someone with memory issues and a poor care agency, being on call 24/7, never having a day off - has left me broken. I am worried that the next phase (detailed below) could be just as bad if not worse. I feel guilty saying that, because it’s not my mum’s fault.

-------------------------------------------

THE INEVITABLE HAPPENED

Given the falls this year it was unsurprising that on fifth November Mum had another, we think about half an hour after we had left for the day. For the last year she has not been able to remember how to operate her call technology and thankfully a passer by heard her crying out. By pure luck this person has relatives in the same building and was able to access my mother and alert us via the emergency notes we leave on the table.

A broken hip. Mum is mending in hospital, but her mobility is poor now and she needs help to stand, she can walk several paces with her frame but needs supervision. Up until the small strokes at the beginning of the year which kicked everything off, mum was still quite independent (she is 88) and the new situation is very hard for her emotionally.

We met with the hospital discharge coordinator about a week ago who was very nice and who felt that a residential placement is the only way forward. She also felt it very important that I get my life back so I can be a daughter again.

-------------------------------------------

HOSPITAL TO CARE HOME – ADVICE PLEASE

I’m unclear as to whether the above-mentioned chat with the discharge coordinator is the ‘needs assessment’ which we understand has to be in place, then a financial assessment. I’ve just had an email from my mother’s community social worker asking if we have any preferences regarding location. I haven’t had an opportunity to fully describe my mother’s needs to anyone (I have H&W POA).

I understand that we should be given a choice of homes and that we can reject the first placement - but then further offers would be withdrawn if we felt they weren’t right for mum? I’m not sure what that means - do they just tell you to go and find somewhere yourself?

I believe the financial assessment will show that mum is under the limit, but I am rummaging through piles of old papers to see if there are any savings she could have forgotten about or anything I can contribute (which could broaden her choices of placement). I understand that if she is just over the upper limit the hospital will put her straight out on the basis that mum is a ‘self-funder’. Then again, as a self funder I presume we would be able to choose the best setting for her needs. But what if you are a self funder for only a couple of months or so?! No care home is going to take you if you can only afford a few weeks - I’ve been out looking at homes and they all want a minimum of two or more years proof that you can pay. My mother does not own her flat.

--------------------------------------------

UNDERSTANDING TOPUPS

I’m thinking about if I could top up to see if I could get a care home with facilities my mum might benefit from or enjoy. Despite her dementia she’s still wanting to be as active as possible and prior to breaking her hip a month ago enjoyed daycare twice a week, going out with me for tea or lunch, bingo, film shows etc. I realise her dementia will get worse with time (it's been stable since it abruptly started on 2nd January this year) but I would like her to enjoy life for as long as she can.

I’ve been told topups are the difference between the fairly low amount the local authority is likely to offer (I don’t yet know what that figure is) and the full private rate of the room. I live in the south-east and the homes which would meet my mother’s needs all start from around £1600 per week or higher. To confuse matters further I’ve been told that top ups have to be arranged with the local authority and paid to them, not to the care home. I was thinking that if I could afford to pay a top-up in a few months time (when an asset I have can be freed up) I could try and negotiate the figure with the care home now and enter into an agreement to pay them back later on.

I will do anything to make sure my mum is in a good place as I’m quite concerned about the local authority homes I’ve seen so far.

---------------------------------------------


I’m wondering how much time the hospital is likely to give us to find somewhere for mum. I realise they will want you out as quickly as possible. I am desperate to avoid mum being placed in sub-standard care (as happened with my father who then died of sepsis). I know how much it means to mum to have a green outlook, good company, lots of activities and outings, and a quiet environment. That can be a very tall order with care homes unless you’re loaded.

Any thoughts or advice would be very welcome. I don’t know what to do. I feel that cumulative exhaustion has left me barely able to think clearly and I’m starting to drop the ball.

The reality of my mum going into care is hitting me like a sledgehammer and I’m so scared of not being able to find her somewhere where she will settle and be happy enough.

 

[AnneF]

If you think she isunder thelimit,call SS and ask for adult care team, and ask their advice as to where they fully fund.
Then get a wriggle on and do a quick flit round- I'd just turn up mid morning/early afternon and talk! Anyon who turns you away may have something to hide. Dont turn up at busy times/meal times

Thank you -

I have a list of care homes which accept full local authority funding, but there aren't many of them. I've visited some of them but feel my mum's needs wouldn't be met and she would go downhill pretty quickly. Hence my waffling about top ups which is what the better homes were saying I would have to do.

I've been going to the homes mid-morning because I thought that might be when the residents would be most active. It's been a depressing experience as I have seen so little engagement - mostly residents sitting around a room with a blaring television, or fast asleep in their chairs. That is my mum's worst nightmare (she's alert and rarely naps). She's also hugely noise sensitive since her brain injury and can't cope with noise in general. I have to find somewhere which has a designated quiet lounge and a room for her which is well soundproofed - not an easy feat.

Observations - without fail, where residents have been in their rooms all have had the television on full blast creating a din which is hugely stressful. Few seem to be watching it - it seems to be something carers do automatically. Another observation is that all common areas have either a loud radio or loud television as well. I felt I would lose my mind after more than a few minutes, so it will be terrible for my poor mum (who still has good hearing).

 

[Baker17]

@AnneF When looking just be aware a care home will do an assessment so can say no even though it maybe your choice. It is better if they don’t take someone because it can avoid a move if they can’t manage the persons behaviours.

 

[jackdog35]

Thank you -

I have a list of care homes which accept full local authority funding, but there aren't many of them. I've visited some of them but feel my mum's needs wouldn't be met and she would go downhill pretty quickly. Hence my waffling about top ups which is what the better homes were saying I would have to do.

I've been going to the homes mid-morning because I thought that might be when the residents would be most active. It's been a depressing experience as I have seen so little engagement - mostly residents sitting around a room with a blaring television, or fast asleep in their chairs. That is my mum's worst nightmare (she's alert and rarely naps). She's also hugely noise sensitive since her brain injury and can't cope with noise in general. I have to find somewhere which has a designated quiet lounge and a room for her which is well soundproofed - not an easy feat.

Observations - without fail, where residents have been in their rooms all have had the television on full blast creating a din which is hugely stressful. Few seem to be watching it - it seems to be something carers do automatically. Another observation is that all common areas have either a loud radio or loud television as well. I felt I would lose my mind after more than a few minutes, so it will be terrible for my poor mum (who still has good hearing).

Am in exactly the same position as you at the moment. My mum has nearly two months funding which isn’t a lot. There’s been no social services assessment, just the hospital saying she can’t go home. So I’m waiting for a call from social services to see how to proceed as I don’t want them saying a couple of months down the line that in their opinion she can go home. There’s only a couple of homes in our town that would be appropriate. I went to one today and it did seem quite depressing and lonely even though the staff were really nice so I feel like my head’s going to explode at the moment.

 

[AnneF]

@AnneF When looking just be aware a care home will do an assessment so can say no even though it maybe your choice. It is better if they don’t take someone because it can avoid a move if they can’t manage the persons behaviours.

A very good point. I have already had two residential homes say they could not take my mother because she does not meet their minimum levels of mobility (she had hip surgery three weeks ago and now has to walk with a frame, requiring help to get up and down). It's a shame because one of those homes would have suited her well I think. This is why I'm thinking that a place which covers future needs would be best, but they all seem to be at a much higher price point.

I don't foresee problems with my mum's behaviour, she isn't aggressive or wandering. She is more prone to complaining about everything I do though.

 

[AnneF]

Am in exactly the same position as you at the moment. My mum has nearly two months funding which isn’t a lot. There’s been no social services assessment, just the hospital saying she can’t go home. So I’m waiting for a call from social services to see how to proceed as I don’t want them saying a couple of months down the line that in their opinion she can go home. There’s only a couple of homes in our town that would be appropriate. I went to one today and it did seem quite depressing and lonely even though the staff were really nice so I feel like my head’s going to explode at the moment.

I'm so sorry to hear that you are in a similar position. I found the process so far to be quite depressing and I'm very anxious about finding somewhere suitable for my mother. I agree that many homes feel like lonely places (and I'm talking about purely residential, not nursing homes which are even more isolating).

It sounds like your mum is trapped in the system at the moment because she can't go home, but there is nowhere else for her other than the hospital. I know that a hospital environment is not the best and it will be very difficult for you both. If you haven't already, I would advise that you prepare a good case for why your mum would not be safe returning home. You need to concentrate on the safety aspects because they are what counts with the social team.

I'm in tears and I can't seem to decide on the right course of action other than to see what the local authority comes up with, and if they can't meet my mum's needs then I will have to go into serious debt for a few months to pay top ups for somewhere better.

 

[Jaded'n'faded]

May I ask what sort of amounts you'd be expected to pay as a top-up?

I'd honestly be very wary about agreeing to do this. The price will increase on a regular basis and I'm pretty sure your mum would not want you to spend all your own money like this. (From the asset you propose to liquidate - that is your money.)

No one is obliged to pay top-ups. If the LA are unable to find a suitable place within their budget they have to increase their budget till they do find somewhere that can meet her needs.

Also, although your mum might express her wishes to be active but you might find that's wishful thinking. Breaking a hip can be a major step back for people with dementia, though it sounds like your mum is recovering well.

I know how much it means to mum to have a green outlook, good company, lots of activities and outings, and a quiet environment

That's a big ask, as is a sound-proofed room! But I wish you luck. In the end, the most important thing is the quality of the care.

 

[AnneF]

May I ask what sort of amounts you'd be expected to pay as a top-up?

I'd honestly be very wary about agreeing to do this. The price will increase on a regular basis and I'm pretty sure your mum would not want you to spend all your own money like this. (From the asset you propose to liquidate - that is your money.)

No one is obliged to pay top-ups. If the LA are unable to find a suitable place within their budget they have to increase their budget till they do find somewhere that can meet her needs.

Also, although your mum might express her wishes to be active but you might find that's wishful thinking. Breaking a hip can be a major step back for people with dementia, though it sounds like your mum is recovering well.


That's a big ask, as is a sound-proofed room! But I wish you luck. In the end, the most important thing is the quality of the care.

The care homes said the top up amount would be the difference between whatever the local authority will contribute (I don't know what my mother's personal allowance will be as yet) and the price they charge a private self funder.

If I guess at the local authority allowance as being something like £700 a week (if we're lucky), the top up would be close to £1000 a week. That's a crazy amount and I can't possibly manage that, but I was hoping to find a care home which might be willing to negotiate (sometimes the case if they're brand new and need to fill the spaces).

I think the local authority will argue that whatever they offer will meet mum's needs (even if it doesn't) and as you say a green outlook and lots of activities will probably not fall under that umbrella, hence my resorting to thoughts of topping up.

My mother's dementia hasn't changed at all since her hip operation (she's quite atypical), but she is bored out of her brain in hospital. She wants to be as active as possible but that doesn't necessarily mean physically active. She likes to be mentally stimulated and engaged with things like conversation, talks, quizzes, chair keep fit, outings and that kind of thing.

I completely agree that the quality of the care is paramount, but if my mum is left in a room with a blaring television and very few people who are able to converse with her, then I think that would destroy her. I'm desperately worried about trying to find an environment which will not send her on a downward spiral.

Edit: You are right that my mum would not want me spending money. But at the same time she is not somebody who would be able to compromise much on her environment or needs and the guilt of putting her in that situation would kill me. She's petrified of being in a setting which feels institutional, closed in or clinical and I promised I would not do that to her.

 

[nitram]

The care homes said the top up amount would be the difference between whatever the local authority will contribute (I don't know what my mother's personal allowance will be as yet) and the price they charge a private self funder.

This difference will change, there will be an annual review of care home fees resulting in an increase, the LA funding will also be reviewed annually, even if the % is the same as the care home the difference will increase.

The home may also decide the resident requires more care and increase the individual's fee.

 

[AnneF]

This difference will change, there will be an annual review of care home fees resulting in an increase, the LA funding will also be reviewed annually, even if the % is the same as the care home the difference will increase.

The home may also decide the resident requires more care and increase the individual's fee.

Very true. But I don't see a way round it unfortunately. I feel I have no choice but to top up in order to find somewhere my mum will be comfortable or content in. I just have to hope I can negotiate a topup fee which will be manageable. I'm feeling very stressed by the whole thing.

On the positive side some of the homes I've spoken to have said that if you can't afford the top ups after two years they will then accept the local authority rate in full.