Social worker wants my mum in care home. Do I have any say in the matter?

[CraigUK]

Hi all. I live overseas but have returned to look after my mum over the summer. She has dementia - which has gotten noticeably worse in the last year or so. However, until recently she was still mobile and could buy things from the local shop etc. Before I arrived back in the UK my mother had been found in a city 20km away, not knowing where she was (this precipitated my speedier return).

This is when the social workers became involved. During summer, I went away for a few days and she fell over, breaking her wrist. After hospital, she went into a care home for respite care. Now, four weeks into respite care, the doctor & occupational therapist are saying she'd developed incontinence (particularly during the night) issues and must stay in longer. This is despite a care package having been set up for when she got out.

Anyway, my sister and I feel she could manage in the house, with daily visits from the care team (x 4 per day). My sister and I would also be present for the first month or so, and she has ongoing weekly visits from another relative.

An addtional concern is that her home would need to be sold to cover the cost of care. This may seem selfish, but it's the only security me and my sister have - and it seems like my mum is being pushed into care sooner than neccesary (my mother does not want to stay in the care home and expresses her wish to leave every time we visit.). NB: the house is worth 80K max, so there would be nothing leftover after any sale.

It looks like the social worker will be pushing to have mum in the care home full time.

My question is this: Do we have to follow the social worker's decision? Do we have any recourse? Is the social worker essentially in control of the situation now? Does my mum have any say in the matter (despite being diagnosed with dementia)?

I realise this is the opposite problem for most people - for whom finding a place in a care home is of key importance.

My mum's dementia is not as extreme as many people in the care home, and her mobility is OK - it seems moving her into full time care now is premature, not to mention incredibly expensive.

 

[Violet Jane]

It's actually quite unusual for doctors and social workers to push for a care home when the family don't want it. Normally, it's the other way round. People who live alone go into care earlier than those who live with someone and people who live alone without available local support will go into care earlier than those who have helpful neighbours and family members living close by.

Does anyone have a POA for Health and Welfare? I don't know to what extent you can override a social worker's decision if you have a POA. I would be arguing that a care home is not the 'least restrictive option' and that a care package of four visits a day should be tried first.

However, a major problem that has to be addressed is the wandering. Door alarms and cameras can help but who is going to monitor your mother's movements and who is going to go and and pick your mother up if she leaves the house? You could argue that there has only been one incident of wandering so far and that there is no evidence that this is entrenched behaviour.

 

[canary]

Hello @CraigUK

I think that what is important to look at is your mums safety.
The two episodes that you mention - being found miles away in a busy city with no idea where she was, and falling and breaking a wrist at a time when she was on her own - are two very big red flags saying that she is very much "at risk". Even if she had the full care package of carers 4 times a day, this would still only amount to 2 hours in 24 and its the rest of the time when she is on her own that you have to worry about.

SWs do not lightly recommend residential. The Mental Health Act states that you have to go for the "least restrictive option" to keep them safe and you also have to "consider the persons preferences" - even if they have lost capacity, so SWs always try and keep them in their own home for as long as possible. All of this, however, can be overruled (including your mums preferences) if she is considered to be at risk of harm.

Personally, I do not think that there is any doubt that she should be in a care home and I do hope that the prospect of having to sell her home (I had to sell mums home too) is not your primary consideration.

 

[Lawson58]

Hi all. I live overseas but have returned to look after my mum over the summer. She has dementia - which has gotten noticeably worse in the last year or so. However, until recently she was still mobile and could buy things from the local shop etc. Before I arrived back in the UK my mother had been found in a city 20km away, not knowing where she was (this precipitated my speedier return).

This is when the social workers became involved. During summer, I went away for a few days and she fell over, breaking her wrist. After hospital, she went into a care home for respite care. Now, four weeks into respite care, the doctor & occupational therapist are saying she'd developed incontinence (particularly during the night) issues and must stay in longer. This is despite a care package having been set up for when she got out.

Anyway, my sister and I feel she could manage in the house, with daily visits from the care team (x 4 per day). My sister and I would also be present for the first month or so, and she has ongoing weekly visits from another relative.

An addtional concern is that her home would need to be sold to cover the cost of care. This may seem selfish, but it's the only security me and my sister have - and it seems like my mum is being pushed into care sooner than neccesary (my mother does not want to stay in the care home and expresses her wish to leave every time we visit.). NB: the house is worth 80K max, so there would be nothing leftover after any sale.

It looks like the social worker will be pushing to have mum in the care home full time.

My question is this: Do we have to follow the social worker's decision? Do we have any recourse? Is the social worker essentially in control of the situation now? Does my mum have any say in the matter (despite being diagnosed with dementia)?

I realise this is the opposite problem for most people - for whom finding a place in a care home is of key importance.

My mum's dementia is not as extreme as many people in the care home, and her mobility is OK - it seems moving her into full time care now is premature, not to mention incredibly expensive.

And when you’re not there and it’s the time between carers coming, who is going to make sure that your mum doesn’t go for a walk somewhere she doesn’t know or doesn’t have another fall?

And sadly for you, the house is the only security your mother has. It is not your security and that in my very humble opinion is hers to provide for her care as long as she needs it. Any money from the sale of her home has nothing to do with you until she dies and then if there’s any left , then it becomes your concern.

Keeping your mum at home when everyone else thinks she should be in care is putting her at risk.

 

[Rosettastone57]

If social services are saying your mother should be in full time care, then that's where she should be and frankly I agree with them. As others have said, wandering and being at risk of falls is a tipping point for 24 hour supervision. There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. You have now reached that point .

 

[SAP]

I think the bottom line is that eventually your mum will need 24/7 care , if this isn’t already the case and she will either have to go into a care home or have live in carers. The local authority will not pay for the latter and it is extremely expensive. So in the non to distant future you and your siblings will either have to move in with her , something that sounds like it would be very impractical to do or she will have to go to residential care and you will have to sell her home. I’m afraid that your family security does not come into it.
Is there a DoLS in place at the moment , if so then your mum does not have mental capacity to make this decision on her own. If no one has POA for health and welfare then the state will make decisions on her behalf that they believe to be in her best interests. If you do have POA then you can make this decision on her behalf, however it sounds like social services do not believe that 4x a day visits will be enough and if they think this is a safeguarding issue they can override the POA.

 

[greenieiridh44]

Its always a really difficult time for all involved, however it certainly appears it is now time for her to be in full time care.... Totally agree with others here that it's your mum's home and any monies of hers is for her care and not filling family pockets....

 

[cairo mick]

And when you’re not there and it’s the time between carers coming, who is going to make sure that your mum doesn’t go for a walk somewhere she doesn’t know or doesn’t have another fall?

And sadly for you, the house is the only security your mother has. It is not your security and that in my very humble opinion is hers to provide for her care as long as she needs it. Any money from the sale of her home has nothing to do with you until she dies and then if there’s any left , then it becomes your concern.

Keeping your mum at home when everyone else thinks she should be in care is putting her at risk.

full agreement

 

[Jessbow]

Who is going to stop her going out when, in a months time, you go home?

Who is going to make sure she doesnt fall between carer visits?

Would she really not be better cared for 24/7?
What happens hen the incontinence increasesto during the day, as well as at night?
How and where is the laundry going to get done? washed, hung out/hung up and put back on the bed pretty much daily? pads are great, if they stay on...........

 

[notsogooddtr]

You really cannot jeopardise your Mum’s safety and well-being for the sake of your own ‘security’.If I thought my kids thought this way I would make damn sure I spent every penny I have.Your mother is not safe,she is not going to get any better.Do the right thing and move her.

 

[Waverleyone]

Lots of judgey replies on here and unqualified opinions as to whether or not the person needs full time care. Even if she does need full time care, this can be provided at home. Yes it’s expensive, but so is a care home. I’m having a similar problem at the moment, in that social services are trying to put my mum in care prematurely. My mum has always stated that she doesn’t want to go in a care home. I’ve said she can live with me when the time comes which admittedly will be soon - but I need to get my own house ready for her first. The care system is supposed to help people to live in their own homes for as long as it is is safe to do so. Safety can never be 100% guaranteed - we all take risks every day and it’s about managing and reducing the risks.

Social services absolutely do put people in care prematurely - because they are an inconvenience. Unfortunately many carers go into the profession not to ‘care’ but to get a wage - the pay is better than working in a supermarket. The care system is short-staffed and care workers think they can pick and choose their clients - the awkward ones get pushed into homes. Families stand by and watch it happen because they think the system must be right. I’ve just narrowly escaped being tricked into putting mum in a respite placement - if I’d agreed, I suspect she would never have got out. Incidentally it’s a human rights issue aswell - the patient still has a right to be heard, even if they are incapacitied - and especially if they voiced their preference prior to being incapacitated. It’s called deprivation of liberty - the risks have to be weighed against the removal of freedom of choice.

 

[Lawson58]

Lots of judgey replies on here and unqualified opinions as to whether or not the person needs full time care. Even if she does need full time care, this can be provided at home. Yes it’s expensive, but so is a care home. I’m having a similar problem at the moment, in that social services are trying to put my mum in care prematurely. My mum has always stated that she doesn’t want to go in a care home. I’ve said she can live with me when the time comes which admittedly will be soon - but I need to get my own house ready for her first. The care system is supposed to help people to live in their own homes for as long as it is is safe to do so. Safety can never be 100% guaranteed - we all take risks every day and it’s about managing and reducing the risks.

Social services absolutely do put people in care prematurely - because they are an inconvenience. Unfortunately many carers go into the profession not to ‘care’ but to get a wage - the pay is better than working in a supermarket. The care system is short-staffed and care workers think they can pick and choose their clients - the awkward ones get pushed into homes. Families stand by and watch it happen because they think the system must be right. I’ve just narrowly escaped being tricked into putting mum in a respite placement - if I’d agreed, I suspect she would never have got out. Incidentally it’s a human rights issue aswell - the patient still has a right to be heard, even if they are incapacitied - and especially if they voiced their preference prior to being incapacitated. It’s called deprivation of liberty - the risks have to be weighed against the removal of freedom of choice.

@CraigUK explained the situation and asked for advice/opinions which we have all been pretty consistent in our thinking.

You have missed the point that money is a big issue as the only asset mum has is her house which was also considered to be his and his siblings only security. He also lives abroad which is another problem for this family.

His mother needs constant care, the son lives abroad and the only way they can care get is to sell her house as while she still owns that, she would be considered to have the assets to be self funded. They do not have the finances to provide care in the way you think they should, so all things considered including mum is at risk, they don’t have the choices you do.

Mum was found 20 kms away from home, not knowing where she was or how she got there. Unless she has the correct care, she is at risk. They would need the money from the sale of the house to fund the sort of care you think she needs but then she wouldn’t have a house to live in anyway.

Bottom line is that they don’t want to sell the house but they need to at some stage, maybe not now, not in three months but eventually they are going to lose what they consider to be their security.

 

[Jaded'n'faded]

@Waverleyone Councils have a budget therefore they have to have economic rules. The maximum care at home they will fund is 4 care visits per day. If the person needs more, it's cheaper to look after them within a care home setting.

Nobody likes this but if it's necessary to keep a person safe then that's the only choice. Many people do far better in a care home than at home.

Usually, when a person goes wandering at night or is incontinent, they need someone with them 24 hours a day. 4 care visits simply isn't enough to stop someone going out in the middle of the night and if the person soils themself after the last care visit (usually early evening) they're going to be left in that state till the morning carer comes. This is unacceptable so a care home is often the best solution.

Care homes exist for a reason. No one ever says, 'Oh yes, put me in a care home!' but often when they express their wishes to remain at home forever, it's a long time before they have dementia and they really don't have a clue what their real care needs would be in that situation, or how much awareness they might have.

Or do you think councils should pay for 24/7 care at home for everyone?

Social services absolutely do put people in care prematurely - because they are an inconvenience. Unfortunately many carers go into the profession not to ‘care’ but to get a wage - the pay is better than working in a supermarket

I'm afraid that is simply not true! Read around the forum and you'll find lots of people battling to get their loved one into full time care because they fear for their safety and social services are insisting the person is fine at home, when they are really not. Often it takes a major crisis before SS will even consider it.

You might want to check out the rules around Deprivation of Liberty Safeguarding - no one can put someone in a care home (family or SS) against that person's will if there is a less restrictive safe option.

Also, please check your figures - the reason there's such a shortage of care staff is because supermarket work is better paid. And forgive me for saying but your sweeping statement about carers going into the profession not to care but just to get a wage strikes me as a bit 'judgey'.

Just my opinion.

 

[Chizz]

Hi @Waverleyone

You said, amongst other matters, (a)

Even if she does need full time care, this can be provided at home. Yes it’s expensive, but so is a care home

The figures usually show that live in carers - one for the day and for the night - is much more expensive than a care home residence

(b) Most PWD say they don't want t go into a care home - as a PWD always has a default position of wanting the status quo, rather than something they don't know, with people they don't know. This is quite understandable.
You said

the patient still has a right to be heard, even if they are incapacitated - and especially if they voiced their preference prior to being incapacitated. It’s called deprivation of liberty - the risks have to be weighed against the removal of freedom of choice.

However, a PWD who does not have the mental capacity to manage their own affairs is not in a position to know and understand what care they need, nor what the choices are and even if they did they can't make an informed choice because they lack the capacity to do so.

If the PWD is or is becoming a danger to themselves or others, then carers are required. Where a PWD has a family member able and willing to take on 24 hour care 24/7/365, there may still come a time when that carer can no longer cope or provide the care that is required to keep the PWD safe. Then either live in carers or a care home becomes the necessity.

When a PWD with dementia no longer has mental capacity (including no longer reason or logic or foresight) then what is needed always trumps what is wanted, if different.

Sorry for being judgey, but that's how I see it. I've only been a full time carer for 6+ years, so still learning.

 

[Hermann]

I’m having a similar problem at the moment, in that social services are trying to put my mum in care prematurely. My mum has always stated that she doesn’t want to go in a care home. I’ve said she can live with me when the time comes which admittedly will be soon - but I need to get my own house ready for her first. The care system is supposed to help people to live in their own homes for as long as it is is safe to do so. Safety can never be 100% guaranteed - we all take risks every day and it’s about managing and reducing the risks.

Social services absolutely do put people in care prematurely - because they are an inconvenience.

You can avoid all and any attempts by Social Services to put your mother into a care home if you can demonstrate to them that she is safe and her care needs are being met at home with you.

I care for my parents, who are both still living in their own home with very severe dementia, and the Social Services have never come remotely close to suggesting that either of my parents should be in a care home; on the contrary, all the social workers, OTs et al. we have had dealings with have been highly complimentary about the level of care my parents are getting at home.

The bottom line, and it is a reasonable one, is that to keep your mum out of a care home, all you have to do is ensure that the Social Services are content that your mum’s care needs are being met in the place where she currently lives.

Get your own house in order, literally and figuratively, and your right to care for your mum at home will follow naturally.

 

[maisiecat]

My husband is in a Dementia care home and has a DOL. This decision was made by Social services and the mental health team on the basis of safeguarding both for him and myself as he had psychotic episodes. I found it painful but I know their decision is right. To replicate the care in the home I would need 2 live in carers and the 4 carer package. Home would have not been his understanding of home.
I think the first time you find the person you care for has wandered off with no idea of who they are or where they are is very sobering.
Also I find the Carers I come across to be delightful and they show kindness and affection to my husband.

 

[northumbrian_k]

Hi @Waverleyone and welcome. I can't comment on your experience or viewpoint. What I can say is that my own has been very different. I struggled to look after my wife at home as her sole carer. Respite stays encouraged my view that physically, mentally and socially she would benefit from care home admission. This was a hard decision but was the best thing that I have ever done for her. She is well cared for by dedicated staff who very clearly give her love and affection far beyond their 'duties' as carers.

The whole premise of the supportive and friendly community that is Dementia Support Forum is that people with experience can share their views with anyone who seeks help and support. None of us are 'qualified' but that doesn't invalidate what we have to say.

I hope that if you need understanding, support and non-judgemental suggestions you too will find them here.

 

[jugglingmum]

As far as pay is concerned, supermarket staff are definitely better paid. My mum's care home commented on it and issue with staff retention. Most care jobs don't pay above the minimum/living wage. (My daughter works in care with adults with learning difficulties and she gets minimum wage - as a student it suits her as she only takes the hours she wants, supermarkets aren't as flexible)

Live in care (just daytime, no night carers) is more expensive than a care home, it's currently being considered for MIL, who has sufficient funds to afford it issue is old age not dementia. SS will rarely fund it.

From your post it also sounds like care agencies aren't able/prepared to support your mum any more and have given notice. There are only certain behaviours that carers will cope with/tolerate when someone is living at home which can be managed differently in a care home setting.

 

[Waverleyone]

@Waverleyone Councils have a budget therefore they have to have economic rules. The maximum care at home they will fund is 4 care visits per day. If the person needs more, it's cheaper to look after them within a care home setting.

Nobody likes this but if it's necessary to keep a person safe then that's the only choice. Many people do far better in a care home than at home.

Usually, when a person goes wandering at night or is incontinent, they need someone with them 24 hours a day. 4 care visits simply isn't enough to stop someone going out in the middle of the night and if the person soils themself after the last care visit (usually early evening) they're going to be left in that state till the morning carer comes. This is unacceptable so a care home is often the best solution.

Care homes exist for a reason. No one ever says, 'Oh yes, put me in a care home!' but often when they express their wishes to remain at home forever, it's a long time before they have dementia and they really don't have a clue what their real care needs would be in that situation, or how much awareness they might have.

Or do you think councils should pay for 24/7 care at home for everyone?


I'm afraid that is simply not true! Read around the forum and you'll find lots of people battling to get their loved one into full time care because they fear for their safety and social services are insisting the person is fine at home, when they are really not. Often it takes a major crisis before SS will even consider it.

You might want to check out the rules around Deprivation of Liberty Safeguarding - no one can put someone in a care home (family or SS) against that person's will if there is a less restrictive safe option.

Also, please check your figures - the reason there's such a shortage of care staff is because supermarket work is better paid. And forgive me for saying but your sweeping statement about carers going into the profession not to care but just to get a wage strikes me as a bit 'judgey'.

Just my opinion.

Where I live, carers are better paid than supermarket workers. My mum does not want to go in a home and 2 weeks into her care package being implemented, the carers were complaining about her being difficult. I wish I’d never asked for the help.

A few weeks later, we were offered a respite place which I refused - I’m willing to care for mum at my house and would only agree to residential care as an absolute last resort.

Social services became aggressive when I refused the respite place - I believe the intention was to get her in the home and keep her there - otherwise, why the aggression?

I’m now trying to get a downstairs bathroom fitted to bring her to my house, aswell as spending several hours every day at mum’s to avoid any more ‘incidents’. Terrified she’ll have her first ‘wander’ and that council will use it as an excuse to swoop before my house is ready. Nobody should have to live in fear like this.

I have poa for my mum and believe I am acting in her best interests by trying to abide by her wishes.

I don’t believe I said councils should provide 24/7 care for free. If my mum goes in a home it’ll be self-funded. If she comes to me, she’ll fund private home carers to provide me with some extra help - I know I’ll need that help.

It’s her money so why shouldn’t she spend her last years being cared for how she chooses if I’m willing to help her do that?

Most of the carers are great, others I have serious reservations about - and social services have been hellish. It’s a living nightmare.

I’m well aware of the deprivation of liberty safeguarding. Believe me, councils have ways of getting round that, hence the ‘offer’ of ‘respite’ care.

Like I said, some of the carers found her difficult - that’s not a good reason to deprive her of her liberty.

As for my comments about folk going into the system for the wage, my info comes from my many friends and family within both the care and nursing systems, who have been tearing their hair out for years - genuine carers and nurses with 30 years experience, seeing youngsters come into it thinking it will be easy.

As far as pay is concerned, supermarket staff are definitely better paid. My mum's care home commented on it and issue with staff retention. Most care jobs don't pay above the minimum/living wage. (My daughter works in care with adults with learning difficulties and she gets minimum wage - as a student it suits her as she only takes the hours she wants, supermarkets aren't as flexible)

Live in care (just daytime, no night carers) is more expensive than a care home, it's currently being considered for MIL, who has sufficient funds to afford it issue is old age not dementia. SS will rarely fund it.

From your post it also sounds like care agencies aren't able/prepared to support your mum any more and have given notice. There are only certain behaviours that carers will cope with/tolerate when someone is living at home which can be managed differently in a care home setting.

2 weeks into the care package, carers started complaining about mum being awkward. Where I live, wages are higher for carers than for supermarket staff at £12 to £14 an hour. Social services are trying to get mum out of the home care system so that the care team don’t become even more short-staffed. I do understand that there are parts of the job that are less comfortable, but my mum’s right to choose should count for something. I’m not being irresponsible - I want mum to come and live with me and this is what she wants too - but my house needs adapted first.

I wish I’d never asked for the care team to come in as social services have made our lives hell.

 

[northumbrian_k]

Hi @Waverleyone I do hope that your plans work out and that your mum settles into her new environment. I am sure that you have asked her if she wishes to leave her home to live with you. Even so, this is likely to be a challenge for both of you. It may add some risk if she wanders in an area with which she is less familiar. As her dementia deepened, my wife began to lose awareness that her home was the house we had shared for nearly 20 years. Home to her was an unattainable place where her parents still lived (a memory of her childhood home).

We can each only seek to do what is best for our loved ones. We can't be certain that what seems a good way forward will be sustainable in future. Recognising this and being able to adapt is, in my view, one of the biggest challenges for carers. Do please come back here at any time as our members are genuinely interested in supporting anyone in need.