Best interests meeting on Friday

[Kated1]

Hello
I have a “best interest “meeting set up with my stepmothers mental health nurse and social worker on Friday this week, at my request.
I have both POA s and she is self funding

At the moment we have 24 hour live in care for my step mother but due to her challenging , often aggressive, behaviour this is getting more and more traumatic for herself , me and the carers.

I believe she is a danger to herself and others as she cannot be prevented from dangerous and risky behaviour ( I could write a book about the type of scary stuff she does ) and I believe she would be safer in a residential dementia specialist care home now.

As the only POA I want to make sure I do everything by the book and get the best professional advice I can to make this very difficult decision and as my SM will not willingly agree to go into a home , I will need help and support. She lacks capacity, according to the mental health team and I totally agree.
I have spent the last few days going back over the carers notes and my own experiences to create a document of the situations we have faced, particularly those that cause a concern regarding her safety and wellbeing.
My question is, do you think I should send this document to the mental health nurse in advance of the meeting or just talk it through at the meeting. I am worried I will forget something crucial or get flustered, particularly if they disregard any of my concerns. I don’t want to appear pushy but I do want them to know what’s has been happening.

I tried talking to the manager of the live in care company today who told me that it would be awful for my SM to go into a home. Not helpful as I do know that too and don’t feel great about it either. I honestly don’t think she actually reads the live in carers report notes that are submitted daily and some of what I told her regarding my concerns on safety seemed to be a surprise to her, and a little voice inside me also thinks that she does not want to lose the £6.5 k I pay her company every month!

A care home would cost more but it’s not about the money, fortunately there is plenty , it’s about the fact that I feel as POA I am totally responsible for keeping her safe and well, not necessarily happy ( as she will be very resistant to leave her home and may be very unhappy indeed about that)

Just need any thoughts as I feel I am a little alone.

 

[Kevinl]

Just be yourself, tell it it like it is, we-are all here to support you, sounds like you're doing a pretty good to me. Forget how many of there are of them, we are,all here for you, strength on numbers. K

 

[SherwoodSue]

I would not let the comments of the live in care manage rent space in your head.
I think you have done and are doing a great job
I don’t think it would hurt to email some bullet points ahead of the meeting
What is the footballing expression? You have left it all on the pitch , you have given your all.
You are motivated by keeping everyone safe , remember that please

 

[DeeCee7]

Helloi @Kated1 at the Best Interest meeting for my PWD I read out my (very long) statement so that I didn’t forget any points. The meeting was organised into sections debating the pros and cons of each possible situation, ie care at home with various scenarios in place, or in a care home but I said I wanted to read my statement which covered everything and then we went back to the pros and cons afterwards. We had a DoLs in place as our PWD wanted to go home and the meeting was held at the end of the temporary care home placement on a D2A. He wasn’t safe at home, and a team of support workers in a care home must trump a single carer ( or even 2) at home.

 

[maisiecat]

Hi @Kated1 I would definitely send a document in advance and also have bullet points ready for the meeting. Often you can have better impact by brief statements so concentrate on issues where your Stepmother does things that compromise her safety.
Pick out details from the live in carers notes where they have had to deal with aggressive behaviour. Also anytime she has left the property or used equipment without being aware of the risk.
I am amazed that you are finding live in carers as usually first time there is outright aggression the carers are pulled out. Like you I think we all have to bear in mind that the Care industry is a massive and moneyspinner and that can affect decisions.
My husband is in a Nursing home following a meeting in hospital. The reason I was given for him not being able to come home was his safety and my safety.
He is settled in the Home and there are very few outbursts so it has definitely been in his best interests.
Good luck

 

[Angel55]

Hello 💗

Usually a meeting is broken down into sections and then there is opportunity for discussion.

There would no harm in emailing the details over prior to a meeting. You can also keep a copy with you as well so you don't forget.

If live in carers cannot keep someone safe then the next step is a residential sort of setting.

You will not appear pushy in fact it doesn't matter if you do to be fair because you are your loved ones advocate for their safety and well being when they are unable to see this for themselves any more. You know them better than anyone else can even live in carers and at this point better than they know themselves.

I look at my loved one now having made the decision a year ago and I see that what we could not ever foresee which is the other thing foreseeing where things will be going, it was the only sensible decision to be made given the circumstances. Are they happy? They are okay ♥️ as happy as anyone could be given the illness so for the moment put that part to one side as well. Concentrate on the best decision and then take each bit as it comes along next....

You got this just keep going....sending you strength because this is not easy.

 

[Kated1]

Thank you all for your great advice and support. I will update you on the outcome. Xxx

 

[Dave63]

Hi @Kated1

I had a best interests meeting with mums mental health team and her then care home as her behaviour was becoming quite extreme. I was pretty apprehensive beforehand but it was actually a really useful meeting and everyone was focused on deciding the very best options available for mum. We all spoke very frankly and discussed the benefits and risks of different ways forward.

I 'think' as you have POA for H&W then you can act as the decision maker during the meeting for your step mum's best interests and the social worker and mental health nurse's function will be to help you come to a decision on what's best.

Mum had a great mental health nurse (and social worker) who was really supportive and had a lot of experience with mums issues and I trusted her judgement. She had been through more best interests meetings than you could shake a dirty stick at so it was really useful to draw on her experience before we made any decisions. I think the hardest thing is trying to seperate the emotional aspect from the purely practical aspect of deciding what's best.

It sounds like the meeting is going to be about two options, stay at home or move into care. Your SM obviously would want to stay at home and in an ideal world that would be the best option but as she lacks capacity and has behavioural issues that has to be balanced against the risks to herself. Try and use the experience of the healthcare people involved to reach a decision but ultimately you know her best so don't feel pressured.

 

[Grannyandpaps]

Hello
I have a “best interest “meeting set up with my stepmothers mental health nurse and social worker on Friday this week, at my request.
I have both POA s and she is self funding

At the moment we have 24 hour live in care for my step mother but due to her challenging , often aggressive, behaviour this is getting more and more traumatic for herself , me and the carers.

I believe she is a danger to herself and others as she cannot be prevented from dangerous and risky behaviour ( I could write a book about the type of scary stuff she does ) and I believe she would be safer in a residential dementia specialist care home now.

As the only POA I want to make sure I do everything by the book and get the best professional advice I can to make this very difficult decision and as my SM will not willingly agree to go into a home , I will need help and support. She lacks capacity, according to the mental health team and I totally agree.
I have spent the last few days going back over the carers notes and my own experiences to create a document of the situations we have faced, particularly those that cause a concern regarding her safety and wellbeing.
My question is, do you think I should send this document to the mental health nurse in advance of the meeting or just talk it through at the meeting. I am worried I will forget something crucial or get flustered, particularly if they disregard any of my concerns. I don’t want to appear pushy but I do want them to know what’s has been happening.

I tried talking to the manager of the live in care company today who told me that it would be awful for my SM to go into a home. Not helpful as I do know that too and don’t feel great about it either. I honestly don’t think she actually reads the live in carers report notes that are submitted daily and some of what I told her regarding my concerns on safety seemed to be a surprise to her, and a little voice inside me also thinks that she does not want to lose the £6.5 k I pay her company every month!

A care home would cost more but it’s not about the money, fortunately there is plenty , it’s about the fact that I feel as POA I am totally responsible for keeping her safe and well, not necessarily happy ( as she will be very resistant to leave her home and may be very unhappy indeed about that)

Just need any thoughts as I feel I am a little alone.

Hiya

I'm a retired nurse - took early retirement to help support mum With her Alzheimers. I would have been glad to have that information before a meeting, it helps paint a picture and you can't always show how bad things are. Even writing this it doesn't seem bad but it was literally an awful situation and you are constantly called or sort out the mess. I couldn't cope with it all. Sadly I then discovered quite how bad she was and she has ended up in care. I'm also POA. She adamantly didn't want to go into care but we could not cope. She was stripping off in the street, overfeeding her dog, trying to get out of my car as i drove along, getting verbally and physically abusive with my step dad, up all night waking him up constantly and paranoid and so so angry. Wandering and losing her purse. Trying to pay for Goods with her bus pass and then accusing stepdad of keeping money from her when she couldn't pay!
I was totally responsible for keeping her safe too and at the end of the day I had to do what I did because she was so unsafe at home, a danger to her self and step dad. I feel guilty all the time even now after 3 years. I always said to relatives that if you aren't coping then you're not in the best place to support someone. Why would it be awful to go into a home? If it's the right one it will make her life better and she'll have company and safety. The best interest meeting will decide what's best for her so it's not your sole responsibility. Technically you don't need the meeting as you have POA but if you're having backlash from her at least it's a decision made by professionals as well as you. I wish you best of luck and please, don't worry if you do put her in a home. It's such a complex disease and it's really difficult to manage. The guilt doesn't go away but at the end of the day you have her safety in mind xx

 

[Vikki B]

Hello
I have a “best interest “meeting set up with my stepmothers mental health nurse and social worker on Friday this week, at my request.
I have both POA s and she is self funding

At the moment we have 24 hour live in care for my step mother but due to her challenging , often aggressive, behaviour this is getting more and more traumatic for herself , me and the carers.

I believe she is a danger to herself and others as she cannot be prevented from dangerous and risky behaviour ( I could write a book about the type of scary stuff she does ) and I believe she would be safer in a residential dementia specialist care home now.

As the only POA I want to make sure I do everything by the book and get the best professional advice I can to make this very difficult decision and as my SM will not willingly agree to go into a home , I will need help and support. She lacks capacity, according to the mental health team and I totally agree.
I have spent the last few days going back over the carers notes and my own experiences to create a document of the situations we have faced, particularly those that cause a concern regarding her safety and wellbeing.
My question is, do you think I should send this document to the mental health nurse in advance of the meeting or just talk it through at the meeting. I am worried I will forget something crucial or get flustered, particularly if they disregard any of my concerns. I don’t want to appear pushy but I do want them to know what’s has been happening.

I tried talking to the manager of the live in care company today who told me that it would be awful for my SM to go into a home. Not helpful as I do know that too and don’t feel great about it either. I honestly don’t think she actually reads the live in carers report notes that are submitted daily and some of what I told her regarding my concerns on safety seemed to be a surprise to her, and a little voice inside me also thinks that she does not want to lose the £6.5 k I pay her company every month!

A care home would cost more but it’s not about the money, fortunately there is plenty , it’s about the fact that I feel as POA I am totally responsible for keeping her safe and well, not necessarily happy ( as she will be very resistant to leave her home and may be very unhappy indeed about that)

Just need any thoughts as I feel I am a little alone.

Sorry to hear the manager said that to you. My mum with dementia is in an assessment bed having fallen down the stairs. She needs to go into a care home as she would not be safe. At home my dad took his eyes off her for a second ( to go to the toilet) and she fell down the stairs as she had no understanding of risk. Whilst she sustained no serious physical injury this incident has made her dementia progress significantly. I don’t want her to have to be in a care home and she wouldn’t have wanted it but there comes a point where the risks out way the benefits and having someone at home could make their outcome worse. Not saying you’re step mum’s at that point but just stating as this manager obviously hasn’t considered the wider picture.
Good luck- one strategy could be painting a picture of the support you need to give on a typical bad day - that might help you organize your thoughts. Best wishes

 

[Kated1]

Hi @Kated1

I had a best interests meeting with mums mental health team and her then care home as her behaviour was becoming quite extreme. I was pretty apprehensive beforehand but it was actually a really useful meeting and everyone was focused on deciding the very best options available for mum. We all spoke very frankly and discussed the benefits and risks of different ways forward.

I 'think' as you have POA for H&W then you can act as the decision maker during the meeting for your step mum's best interests and the social worker and mental health nurse's function will be to help you come to a decision on what's best.

Mum had a great mental health nurse (and social worker) who was really supportive and had a lot of experience with mums issues and I trusted her judgement. She had been through more best interests meetings than you could shake a dirty stick at so it was really useful to draw on her experience before we made any decisions. I think the hardest thing is trying to seperate the emotional aspect from the purely practical aspect of deciding what's best.

It sounds like the meeting is going to be about two options, stay at home or move into care. Your SM obviously would want to stay at home and in an ideal world that would be the best option but as she lacks capacity and has behavioural issues that has to be balanced against the risks to herself. Try and use the experience of the healthcare people involved to reach a decision but ultimately you know her best so don't feel pressured.

Thank you , your advice is really useful

 

[Kated1]

Hiya

I'm a retired nurse - took early retirement to help support mum With her Alzheimers. I would have been glad to have that information before a meeting, it helps paint a picture and you can't always show how bad things are. Even writing this it doesn't seem bad but it was literally an awful situation and you are constantly called or sort out the mess. I couldn't cope with it all. Sadly I then discovered quite how bad she was and she has ended up in care. I'm also POA. She adamantly didn't want to go into care but we could not cope. She was stripping off in the street, overfeeding her dog, trying to get out of my car as i drove along, getting verbally and physically abusive with my step dad, up all night waking him up constantly and paranoid and so so angry. Wandering and losing her purse. Trying to pay for Goods with her bus pass and then accusing stepdad of keeping money from her when she couldn't pay!
I was totally responsible for keeping her safe too and at the end of the day I had to do what I did because she was so unsafe at home, a danger to her self and step dad. I feel guilty all the time even now after 3 years. I always said to relatives that if you aren't coping then you're not in the best place to support someone. Why would it be awful to go into a home? If it's the right one it will make her life better and she'll have company and safety. The best interest meeting will decide what's best for her so it's not your sole responsibility. Technically you don't need the meeting as you have POA but if you're having backlash from her at least it's a decision made by professionals as well as you. I wish you best of luck and please, don't worry if you do put her in a home. It's such a complex disease and it's really difficult to manage. The guilt doesn't go away but at the end of the day you have her safety in mind xx

Thank you , it was so helpful to read about your experiences. It’s a relief to know I am not alone x

 

[Kated1]

Sorry to hear the manager said that to you. My mum with dementia is in an assessment bed having fallen down the stairs. She needs to go into a care home as she would not be safe. At home my dad took his eyes off her for a second ( to go to the toilet) and she fell down the stairs as she had no understanding of risk. Whilst she sustained no serious physical injury this incident has made her dementia progress significantly. I don’t want her to have to be in a care home and she wouldn’t have wanted it but there comes a point where the risks out way the benefits and having someone at home could make their outcome worse. Not saying you’re step mum’s at that point but just stating as this manager obviously hasn’t considered the wider picture.
Good luck- one strategy could be painting a picture of the support you need to give on a typical bad day - that might help you organize your thoughts. Best wishes

Thank you . I am so worried that she will fall or hurt herself or others . I appreciate your time in responding to me x

 

[Kated1]

Hello all. So I thought I would update you after the meetings today.
Unfortunately my SM would not engage with the mental health nurse or social worker do they could not complete the mental capacity test. It’s frustrating because I knew she wouldn’t engage and now they say that they will have to come back another day and try again ( I suspect SM will do the same thing again)!
We had a chance to sit down without my SM and talk through some of the 50 odd concerns I had written down and sent to them in advance and they became obsessed with only one them ( opening the front door in the night and going outside) . They were taking about putting an alarm on the door and installing cctv so they could “prove “ she was doing it ( although myself and the carer both confirmed she did do that)
They seemed to ignore my other 49 concerns and said they would go back to them at another time.
So frustrated as I am no further forward and I had hyped myself up that today was the day when I would get some proper advice and support.
They say without undertaking the capacity test they would have to ask my SM if it was ok with her to install cameras ( who will have to view all this footage, little old me, I presume)? And to wake up the neighbours with a door alarm? If they ask her, she will say no, of course!
Feeling like we are going backwards here. The mental health nurse has already said my SM lacks capacity but without the formal test ( which SM won’t do) they can’t do anything.

So now do I have to wait until she has an accident, is hospitalised, kills herself , me or her carer???? Arghhhh!

 

[Dave63]

Sorry it didn't go well @Kated1.
I'm not really clued up on what happens if a person refuses a mental capacity assessment but hopefully someone on the forum will have some experience of this. I did find an article referring to this situation but not sure if it's any help.

Dealing with clients who are unwilling or unable to engage

There are many occasions where an individual may either choose to, or be unable to, engage with a mental capacity assessment.

mental-capacity.co.uk

 

[Mumlikesflowers]

Gosh how draining and demoralising.

My mother is now in a care home. Meetings with professionals that involved my mother in the earlier years of dementia were stressful as well as unproductive. I only got things done by using my own judgement and talking to people without my Mum's knowledge. I never really wanted to hand the decisions to professionals and I still don't. If you have real insight into your stepmother's journey then you are the expert and arbiter as far as I'm concerned.

As a self-funder, go ahead and do your research re local homes if you have not done so already. The idea of moving Mum from her house to a care home was almost impossible to comprehend and I was convinced Mum would be off the scale with anguish but she was not. I'm still amazed by this to this day, only because all the signs over time had been to the contrary. The care agency manager may not have been totally cynical re saying what they did. But the truth is they don't know how she will react.

You are very likely the expert plus you are the one who feels all the responsibility. I'm not going to give you a rosy-tinted perspective on life in a care home. But overall it was the right decision for us at the time. You are to be commended for going the live-in carer route and you have endeavoured to prolong her time in her home. Re capacity, they can apply for a Deprivation of Liberty Order at the care home. I did not need any further proofs of incapacity as a POA and with Mum as self-funding. In my view, your hands are not tied and you can go ahead with what you consider a best interests decision.

 

[canary]

Unfortunately my SM would not engage with the mental health nurse or social worker do they could not complete the mental capacity test.

Would she not engage with the test, or was she unable to engage with it?
I think that SWs interpretation of mental capacity has mostly to do with finances because if they say that someone has capacity, or chose not to engage with the test then they dont have to do any more.

I also suspect that out of all your concerns, the way that she is going out of the front door is something that they can address in her home - so that is a box that can be ticked. I suspect that in order to move her into a care home you will have to demonstrate that she is indeed "at risk of harm"

 

[Anthoula]

Seems to me that if a person refuses to undergo a mental capacity assessment there is little to be done, and this especially impacts on those who are not self funders.