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

[Waverleyone]

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.

Hi northumbriank_k - I appreciate that my post has hit a raw nerve for many - I was at the end of my tether when I posted on the forum yesterday and could have worded it better, so apologies to whoever I’ve offended.

I can’t go into too much detail and may have already said too much. The system doesn’t always work in the best interests of the individual.

Given my recent experience, I don’t think I’d be able to trust any future respite offer. I’m genuinely trying to act in mum’s best interests and a care home may well end up being the only option - my issue is specifically in regard to people being taken away against their will prematurely - and by prematurely I mean the risks are not great enough yet to justify removal from her own house. Again I can’t go into detail as I’d be betraying confidences from within the system. I have the utmost admiration for the carers who are in the job for the right reasons.

Our GP is backing us on this as he’s seen it many times himself (the premature removal).

Honestly at my wits end worrying that mum might wander in the meantime before I have things in place - and that the decision will be taken out of my hands. I shouldn’t be living under duress like this - spending several hours every day at mum’s and trying to sort my own house out at the same time, and worrying every time I leave that something might happen. She’s classed as medium risk, not high risk, but my worry is that one incident is all social services are looking for.

One of the things social services said to me was that because she’s a smoker, I’m being irresponsible incase she sets herself or the house alight. There is no evidence to suggest this is an imminent risk. I feel bullied and harassed. I could confiscate her cigarettes but what if that triggered her to leave the house to buy some? Being a lifelong smoker doesn’t seem to me to be a justifiable reason to be locked up. I’m reducing and eliminating risks wherever I can and thought the system was there to help us. It seems I was wrong. 2 weeks was insufficient time to allow mum to adjust to care package.

My post re home care funding was based on the fact that that if the op doesn’t want to put parent in a home, the other option is to self fund extra care at home privately.

 

[Waverleyone]

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.

Yes - mum has expressed her wish to live with me if there is no alternative to going in a home. Ultimately she wants to spend the last of her life in her own house but that could only happen if I move in with her - I have my own house and family.

 

[Jaded'n'faded]

I don't know what the time scale is with getting your house ready, or how 'bad' your mum is right now. Both factors could be significant.

However, if there was a crisis before you were ready, I don't think respite care would be the 'trap' you imagine. I'm guessing (and only guessing) that SS are involved because they are funding or part-funding her care at the moment, or that some previous safeguarding incident occurred? But if you get your house sorted out, there's no reason why you can't move your mum in with you whether she's in respite or not. I would be amazed if SS insist she remains in care if you, i.e. family are prepared to offer her full time care at your home.

I do have my suspicions about the way SS work sometimes though! In a scenario where someone is in their own home: if they have virtually no savings apart from the house they own, care at home must be funded by SS. That's expensive. Move that person to a care home and hey presto! - suddenly they have a house to sell and become self-funded, then SS can wash their hands of the situation. Obviously, I have no proof this ever happens but I do know that councils are very strapped for cash. So it has less to do with someone being 'difficult' and more to do with good old money...

A word of caution: your plan to have your mum move in with you (with carers there to assist) sounds like a great solution but may not be. Are your family all on board with this? It will radically change their lives - I don't know if you have children but that's something to consider. Your mum, sadly, will only get worse than she is now. She may stop recognising her family or take a dislike to one or more of you. She may insist she wants to go home. She will at some point become incontinent, with all that entails, and will need a lot more care and supervision than she does now. I'd say to anyone planning to move a parent with dementia into their family home to think very carefully...

 

[Jessbow]

Hi northumbriank_k - I appreciate that my post has hit a raw nerve for many - I was at the end of my tether when I posted on the forum yesterday and could have worded it better, so apologies to whoever I’ve offended.

I can’t go into too much detail and may have already said too much. The system doesn’t always work in the best interests of the individual.

Given my recent experience, I don’t think I’d be able to trust any future respite offer. I’m genuinely trying to act in mum’s best interests and a care home may well end up being the only option - my issue is specifically in regard to people being taken away against their will prematurely - and by prematurely I mean the risks are not great enough yet to justify removal from her own house. Again I can’t go into detail as I’d be betraying confidences from within the system. I have the utmost admiration for the carers who are in the job for the right reasons.

Our GP is backing us on this as he’s seen it many times himself (the premature removal).

Honestly at my wits end worrying that mum might wander in the meantime before I have things in place - and that the decision will be taken out of my hands. I shouldn’t be living under duress like this - spending several hours every day at mum’s and trying to sort my own house out at the same time, and worrying every time I leave that something might happen. She’s classed as medium risk, not high risk, but my worry is that one incident is all social services are looking for.

One of the things social services said to me was that because she’s a smoker, I’m being irresponsible incase she sets herself or the house alight. There is no evidence to suggest this is an imminent risk. I feel bullied and harassed. I could confiscate her cigarettes but what if that triggered her to leave the house to buy some? Being a lifelong smoker doesn’t seem to me to be a justifiable reason to be locked up. I’m reducing and eliminating risks wherever I can and thought the system was there to help us. It seems I was wrong. 2 weeks was insufficient time to allow mum to adjust to care package.

My post re home care funding was based on the fact that that if the op doesn’t want to put parent in a home, the other option is to self fund extra care at home privately.

Once incident will be enough though!
SS risk assess- what are the risks involved with her smoking unsupervised? High , medium or low risk, its a risk! She falls aleep in the chair with a cigarette in her hand/drops it on the carpet/leaves it lit in the ashtray ( or even empties the ashtray into the bin) - onces is all it takes.

If she wanders alone, and steps into the road- once is all it takes.

Incontinent? - not a problem ....until it happens

I cannot understand why you wont accept respite whilst the work is being done on your property

 

[SAP]

appreciate that my post has hit a raw nerve for many - I was at the end of my tether when I posted on the forum yesterday and could have worded it better, so apologies to whoever I’ve offended.

@Waverleyone we are all walking a very difficult road and we all have very differing experiences so I’m hoping no one took offence . It sounds like you are having such a stressful time and not being supported sufficient when all you want is the best for your mum. I rather suspect that ss can see a situation where they may have to take blame and it has resulted in a knee jerk reaction. Having worked with family carers and social services for several years and in social care for more years than I care to remember, nothing would surprise me. The care situation is so precarious now with care home staff being massively underpaid ( my son gets more per hour in well known DIY store and my daughter in a supermarket) and homes being understaffed. I feel very fortunate that my mum is in a home where she is well cared for and is content. We should all be allowed to feel that confident in what ever care choices we make.

 

[Waverleyone]

I don't know what the time scale is with getting your house ready, or how 'bad' your mum is right now. Both factors could be significant.

However, if there was a crisis before you were ready, I don't think respite care would be the 'trap' you imagine. I'm guessing (and only guessing) that SS are involved because they are funding or part-funding her care at the moment, or that some previous safeguarding incident occurred? But if you get your house sorted out, there's no reason why you can't move your mum in with you whether she's in respite or not. I would be amazed if SS insist she remains in care if you, i.e. family are prepared to offer her full time care at your home.

I do have my suspicions about the way SS work sometimes though! In a scenario where someone is in their own home: if they have virtually no savings apart from the house they own, care at home must be funded by SS. That's expensive. Move that person to a care home and hey presto! - suddenly they have a house to sell and become self-funded, then SS can wash their hands of the situation. Obviously, I have no proof this ever happens but I do know that councils are very strapped for cash. So it has less to do with someone being 'difficult' and more to do with good old money...

A word of caution: your plan to have your mum move in with you (with carers there to assist) sounds like a great solution but may not be. Are your family all on board with this? It will radically change their lives - I don't know if you have children but that's something to consider. Your mum, sadly, will only get worse than she is now. She may stop recognising her family or take a dislike to one or more of you. She may insist she wants to go home. She will at some point become incontinent, with all that entails, and will need a lot more care and supervision than she does now. I'd say to anyone planning to move a parent with dementia into their family home to think very carefully...

You see, I thought the care package would be in place until the family decided jointly that mum would be genuinely better off in a home. I didn’t expect the system to turn on me within a fortnight. Mum doesn’t own her own home but has funds in the bank.

If she could continue in her own house for longer - maybe I would then feel more comfortable about taking the step to remove her to a nursing home. What I don’t like is the forcing.

Some of the carers don’t like the toilet side of things - and that’s been confirmed by some of the other carers, and friends within the care profession. The sector is short-staffed as it is, so they don’t want the staff who can’t deal with toilet issues to leave. That’s what it’s about - toilet issues, not safety. Council are trying to use her dignity as an excuse. It doesn’t wash with me - she’s a nuisance because she has toilet issues. It’s not a daily problem but one carer felt sick. Sorry but it’s part of the job if you choose to go into the care sector. I sympathise to an extent - nobody likes poo - but not to extent where I’d agree someone should lose their liberty because of some incontinence that a carer can’t handle as part of their job.

To my knowledge there have been no safeguarding issues.

 

[Waverleyone]

@Waverleyone we are all walking a very difficult road and we all have very differing experiences so I’m hoping no one took offence . It sounds like you are having such a stressful time and not being supported sufficient when all you want is the best for your mum. I rather suspect that ss can see a situation where they may have to take blame and it has resulted in a knee jerk reaction. Having worked with family carers and social services for several years and in social care for more years than I care to remember, nothing would surprise me. The care situation is so precarious now with care home staff being massively underpaid ( my son gets more per hour in well known DIY store and my daughter in a supermarket) and homes being understaffed. I feel very fortunate that my mum is in a home where she is well cared for and is content. We should all be allowed to feel that confident in what ever care choices we make.

I’m pleased to hear your mum is in a home where she is happy and well cared for - unfortunately I’ve heard lots of less pleasant experiences - I have friends who have never forgiven themselves for doing what they thought was the right thing and then had to live with seeing their parent miserable until they passed. I know some care homes are great - I would have an issue if I could genuinely believe mum would be happy and well cared for. I told social services that I have a legal obligation to act in mums best interests based on both her prior and current wishes. Social services say that’s incorrect and basically mum’s wishes don’t matter. It’s appalling.

 

[Waverleyone]

Once incident will be enough though!
SS risk assess- what are the risks involved with her smoking unsupervised? High , medium or low risk, its a risk! She falls aleep in the chair with a cigarette in her hand/drops it on the carpet/leaves it lit in the ashtray ( or even empties the ashtray into the bin) - onces is all it takes.

If she wanders alone, and steps into the road- once is all it takes.

Incontinent? - not a problem ....until it happens

I cannot understand why you wont accept respite whilst the work is being done on your property

 

[Violet Jane]

You need to get on and sort out your house as soon as possible. In the meantime, you could install a commode which would enable your mother to move in straight away if SS are really concerned about her safety. Many people use commodes in addition to or instead of a toilet. Alternatively, you could move in with your mother until the work to install a downstairs toilet is completed.

SS will almost never pay for more than four carer visits a day. If you want more visits or live-in or overnight care then you or your mother would have to fund this. Live-in care is very expensive and so is waking night care.

Dealing with toileting is part of a carer's job. I've never heard of a carer objecting to this. That's not a reason for a person going into a care home. However, if a person is very incontinent then there is a question of whether his/her health and dignity are being compromised by being left in soiled underwear for hours, which is what will happen if s/he does not have 24 hour care.

As has been said above, think carefully about moving your mother in with you. You may find that if it proves too challenging for you and the family to cope with SS will drag their heels about getting her moved to a care home!

 

[Waverleyone]

Hi Jessbow

By that logic though, pwd should be put in a home before they start wandering, and all smokers with dementia too - do you honestly not see any issue with that? What about a 30 year old alcoholic who falls asleep with a fag in his hand (and possibly children asleep upstairs?) Is it ok for him to remain at home endangering his entire family? At what point do we say potential safety risks outweigh personal liberty? We all take risks, every single day. Obviously we do our best to reduce risk, and the risks get greater as we get older. Anybody at any time can have a car crash, get run over, fall and have a fatal knock to the head… The best we can do is risk assess, monitor and constantly review - it’s funny social services didn’t give a hoot about mum’s safety when I was practically begging for care team intervention.

To put pwd in a nursing home before they have wandered, how could that be justified? Not all pwd do wander - maybe mum never will. Should we lock all criminals up for life ‘incase’ they commit another crime?

The fire brigade are due out to risk assess. I’m buying fire retardant everything as much as I can. I’ve eliminated paint tins, chemicals, unnecessary plastics, glasses, disconnected the cooker. Mum will have to stop smoking if she’s coming to live with me, I’m going to try her with vaping this week and hope she doesn’t try going to the shop for cigarettes. To me the road safety is a bigger safety risk than the smoking.

My point is, we can’t incarcerate people for something that hasn’t and may not happen, surely? I have Herbert protocol, I have webcam on front door just incase she did go out (it also keeps the carers on their toes as some of the reports they’ve been giving seem to have been exaggerated).

As for incontinence well you hit the nail on the head there. Mum’s had a few incidents - and some of the carers cannot cope with poo. I sympathise - but again, the occasional accident can’t possibly justify ripping her from her own home where she still has memories of her life with my dad.

Finally, in regard to respite care - I’ve been advised by several carers and nurses to be very wary because they’ve seen plenty go in for so called respite and not get out, despite protestation from both the pwd and their family. It’d be easier for them to get the ‘2 professional opinions’ signed off if mum goes in for respite. (Who cares, it’s just another oldie, has to happen sometime so why not now). I don’t believe mum should be in a home at this stage, just because some carers can’t cope with the incontinence aspect. And I’m not imagining this is the case - it’s been confirmed by someone in the system who is appalled at what is happening.

Mum still has rights - legally and morally - despite her incapacity - and that’s what some of my family, and the system, are failing to see.

Apologies for all the long posts, I’m absolutely beside myself with worry and despair, and perhaps coming across as aggressive where I don’t mean to.

Hopefully the respite place will have gone to someone else and the council will back off now. I’m doing all I can to show I’m responsible and I’ve built a good rapport with most of the carers.

 

[Waverleyone]

You need to get on and sort out your house as soon as possible. In the meantime, you could install a commode which would enable your mother to move in straight away if SS are really concerned about her safety. Many people use commodes in addition to or instead of a toilet. Alternatively, you could move in with your mother until the work to install a downstairs toilet is completed.

SS will almost never pay for more than four carer visits a day. If you want more visits or live-in or overnight care then you or your mother would have to fund this. Live-in care is very expensive and so is waking night care.

Dealing with toileting is part of a carer's job. I've never heard of a carer objecting to this. That's not a reason for a person going into a care home. However, if a person is very incontinent then there is a question of whether his/her health and dignity are being compromised by being left in soiled underwear for hours, which is what will happen if s/he does not have 24 hour care.

As has been said above, think carefully about moving your mother in with you. You may find that if it proves too challenging for you and the family to cope with SS will drag their heels about getting her moved to a care home!

Hi Violet Jane and thanks for the input. I have a downstairs toilet and washbasin, no shower. Shower over bath upstairs so that’s not ideal, as frailty will become more of an issue.

Perhaps you see my point to some extent then - some of the younger carers can’t deal with bowel issues without retching. There are now no care visits without me present - I’m happy to intervene if a carer can’t cope - I best get used to it after all. So far I haven’t needed to. Most of them are great. Overnight seems mostly ok - morning carer is usually a very experienced, patient lady. Mum is still mobile and I think got in a messy pickle one morning before carer arrived. She was also refusing help to wash/shower but we’ve had a remarkable turnaround on that this week - maybe things will settle now for a while and give me a chance to think more objectively instead of panicking.

The sector is crying out for carers and it seems many are going into it without understanding how demanding a job it is.

My view is that if mum is paying for own care, it should be implemented in a way that we think is genuinely in her best interests - ideally in her own house for now, with private carers coming in over time (providing I can find any). I just want to look at all the options rather than feeling pressured and bullied or having the decision taken away from us by a system that dragged its heels in providing support in the first place. Then I might feel more accepting of the care home prospect - when it’s at the right time, for the right reasons.

 

[Waverleyone]

I don't know what the time scale is with getting your house ready, or how 'bad' your mum is right now. Both factors could be significant.

However, if there was a crisis before you were ready, I don't think respite care would be the 'trap' you imagine. I'm guessing (and only guessing) that SS are involved because they are funding or part-funding her care at the moment, or that some previous safeguarding incident occurred? But if you get your house sorted out, there's no reason why you can't move your mum in with you whether she's in respite or not. I would be amazed if SS insist she remains in care if you, i.e. family are prepared to offer her full time care at your home.

I do have my suspicions about the way SS work sometimes though! In a scenario where someone is in their own home: if they have virtually no savings apart from the house they own, care at home must be funded by SS. That's expensive. Move that person to a care home and hey presto! - suddenly they have a house to sell and become self-funded, then SS can wash their hands of the situation. Obviously, I have no proof this ever happens but I do know that councils are very strapped for cash. So it has less to do with someone being 'difficult' and more to do with good old money...

A word of caution: your plan to have your mum move in with you (with carers there to assist) sounds like a great solution but may not be. Are your family all on board with this? It will radically change their lives - I don't know if you have children but that's something to consider. Your mum, sadly, will only get worse than she is now. She may stop recognising her family or take a dislike to one or more of you. She may insist she wants to go home. She will at some point become incontinent, with all that entails, and will need a lot more care and supervision than she does now. I'd say to anyone planning to move a parent with dementia into their family home to think very carefully...

Thanks Jaded

I certainly have some thinking to do, and for now hope things have settled enough for me to do so.

 

[Hermann]

Some of the carers don’t like the toilet side of things - and that’s been confirmed by some of the other carers, and friends within the care profession...That’s what it’s about - toilet issues, not safety... I sympathise to an extent - nobody likes poo - but not to extent where I’d agree someone should lose their liberty because of some incontinence that a carer can’t handle as part of their job.

I hope you don't mind me asking one crucial question, Waverleyone.

Given the poor track record of your mum's carers when it comes to them dealing with incontinence, what solution do you see to this in the longer term if your mother remains at home (in your home, presumably)?

I have encountered a similar reluctance (mentioned elsewhere) on the part of carers to adequately clean the client and their surroundings when soiling has taken place, but the solution I have found is for there to always be a family member working with the carer when any personal care is being performed.

It's a solution that works very well for us, as far as getting the job done satisfactorily, but it does require either me or my wife or another family member to do the dirty part of the job, i.e. the wiping, cleaning, and disposal of waste after the job is done. We happily do this at every pad change, and in our case we do between six and eight pad changes a day on my two parents.

In order to ensure that your mother's hygiene is assured, would you and other family members be prepared to roll your sleeves up and do what you find the carers reluctant to do?

 

[Violet Jane]

Strip washes are fine whilst you're getting a downstairs shower / wet room installed.

It seems ridiculous that you have to be present for all carer visits. If your mother is funding her own care then you can find alternative carers yourself and don't have to use the agency that the LA uses.

On the wandering point, you can install door alarms which send an alert whenever your mother leaves her house. You are obviously local and so would be able to go and pick her up. Some relatives install cameras so that they can check up on their PWD.

I'm wondering whether it's the smoking that is regarded as the biggest risk. I think that it will be difficult to move your mother across to vaping but you can try.

 

[Hermann]

It seems ridiculous that you have to be present for all carer visits.

Could you explain why?

 

[Bod]

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.

Hermann
I would ask you to understand that everyones dementia journey is unique to them.
Some are easy, others impossibly difficult, some Carers find caring easy in all it's forms, others have very definite" lines in the sand", some just cannot cope at all.
By your own description, you have your situation, in order, in a way that suits you.
Not everybody can be that organised, for a variety of reasons mostly outside of their control.
Could you care for your parents entirely on your own, with no family help, only with 3 or 4 1/2hr Care visits a day.
Add in siblings who live away,and don't believe the situation, and just want to protect their "inheritance".
Life ain't always easy.

Bod.

 

[Hermann]

Hermann
I would ask you to understand that everyones dementia journey is unique to them.

No need to ask; I already understand that.

You seem to have misconstrued the purpose of my post, which was to explain how Waverleyone can best neutralize the threat of his mum being sent into care against his and her will.

Is my statement: "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." one that you don't agree with or think unreasonable?

Could you care for your parents entirely on your own, with no family help, only with 3 or 4 1/2hr Care visits a day.

On those terms, yes. I already do the vast majority of the care (including periods of up to six weeks when I have done literally all of it) and this with only one twenty minute care visit a day, not the three or four you presuppose.

By your own description, you have your situation, in order, in a way that suits you.

To be precise, it suits my parents, because it guarantees their welfare, which is my primary consideration.

 

[SAP]

Could you explain why?

Why it is ridiculous to be present for carers…. Well because it is their job to do the physical care they are paid for. Why else are they there? If someone does not live with the PWD and has to travel every day to be present for care visits it defeats the purpose of having the carers in the first place. What if the family member can’t make it, has to work, has their own health issues? There are many reasons why family can’t or won’t do physical care , that is what the paid cares are in place for.

 

[Violet Jane]

@Hermann, because the carers are being paid to do a job. @Waverleyone has mentioned a family and so I assume that he is relatively young and working.

I think that your situation i.e. always having family members (you mention you and your wife and another family member - perhaps there is more than one) willing and available to assist visiting carers with intimate personal care is unusual. In most cases care is left to one family member 24/7.

My husband and I supported an elderly friend for over three years. My husband was her attorney for property and financial affairs. Should I have attended every carer visit? We checked up on the carers and were the first point of call for any issues (and there were issues as our friend's dementia progressed and she became more challenging in various ways). I effectively acted as next of kin but I was not prepared to do or supervise personal care.

 

[Palerider]

I do have my suspicions about the way SS work sometimes though! In a scenario where someone is in their own home: if they have virtually no savings apart from the house they own, care at home must be funded by SS. That's expensive. Move that person to a care home and hey presto! - suddenly they have a house to sell and become self-funded, then SS can wash their hands of the situation. Obviously, I have no proof this ever happens but I do know that councils are very strapped for cash. So it has less to do with someone being 'difficult' and more to do with good old money...

Having dealt with a very shrewd LA financial assessor I am inclined to say your suspicion is likely more a reality. The LA will act in a way that benefits them as well -there is just no extra cash for people where and when they need it, my own journey bears testimony to that when our LA had no provision for care at home where mum lived. Stick to your guns @Waverleyone if this is something you really want to undertake, of course there is also the prospect that you may not cope and then have to rethink again.