How to dispute mental capacity decision

Always smile

Registered User
Nov 24, 2022
24
0
Hi, my previous post nearly 2 years ago was about trying to change things to improve life for everyone. 2 years on and, well, it’s as it was. Mum is still at home. I’m still the only family member on hand. Time feels wasted….its a constant battle to keep everyone happy as you know. I still have no other family support, apart from my husband. I still work full time.

Mums annual Mental Capacity and Care assessment was last summer. She was deemed as capable. Mainly because she has a rehearsed script. It’s all rubbish and based on mixed memories as you all know. I’ve said that. I wasn’t allowed to be at the mental capacity assessment meeting. It took another 8 months for us to get the report and so the next review is nearly another year away. I’ve asked for another review already. The report actually went to Mum. I had no idea of it’s content or that I wasn’t getting a copy. Mum had no idea what it was all about, but I bet the distressed phonecalls I had about her signing the house over to someone has something to do with it. I have my copy now after insisting on one. My name was assigned to certain things without my agreement, but there is no one else anyway.

Mum sits in the chair all day mostly. Does not realise her clothes are dirty. The carers occasionally ask her to change them. She gets bin bags out of the bin and puts back food in the fridge. Not every week to be fair. No comprehension of bacteria or how long the food has been in the bin. She thinks people are out to poison her. Adult Services are aware of all this. She has 4 care visits a day. Is normally in bed before the last one. The Carers don’t mention this very often, infact their reports are glowing. Very different to what I see mostly.

I was asked by AS, does Mum still go back home after worrying the neighbours with something or on one of her numerous trips out the front to check the bins. Should I have said no? Is that what we have to do? I really don’t want a fall to be the catalyst of change for her. That’s the other option.

Mum has her own property to pay for her residential care. Why will AS not accept my decision again that its time? We have POA financial only. Any advice greatly received. I appreciate AS are inundated with cases. It must be a very difficult job emotionally. Another year stretches ahead though…
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,325
0
High Peak
If you weren't doing all the things you are doing, you know your mum wouldn't be safe, even with carers.

I'm afraid really, you're waiting for a crisis that will 'prove' it is time for a care home. Which is awful because it means your mum will come to harm, either falling, wandering and getting lost or some other thing, maybe worse :(

You could tell the SW dealing with her case that you are no longer able to support your mother and in 7 days you will be withdrawing all help, turning off your phone, etc. This is what it takes to make them realise that your mum really is not safe at home any longer.

As she will be self-funding, there's nothing actually stopping you from moving her to a care home yourself if she's amenable. If she refuses, it's a lot more difficult as a DoLS order would have to be applied for. q.v.
 

Always smile

Registered User
Nov 24, 2022
24
0
If you weren't doing all the things you are doing, you know your mum wouldn't be safe, even with carers.

I'm afraid really, you're waiting for a crisis that will 'prove' it is time for a care home. Which is awful because it means your mum will come to harm, either falling, wandering and getting lost or some other thing, maybe worse :(

You could tell the SW dealing with her case that you are no longer able to support your mother and in 7 days you will be withdrawing all help, turning off your phone, etc. This is what it takes to make them realise that your mum really is not safe at home any longer.

As she will be self-funding, there's nothing actually stopping you from moving her to a care home yourself if she's amenable. If she refuses, it's a lot more difficult as a DoLS order would have to be applied for. q.v.
Thank you so much for your reply. Yes, I’ve tried to explain why Mum‘s not safe and I also have video evidence of some of the things she’s doing. Still not enough.

Unfortunately there is no assigned SW as it’s a new one for each annual review.

Mum doesn’t agree with residential care as she says she’s managing, to all concerned, along with a list of what she says she does. It’s really unbelievable to listen to. They just seem to take her word for it, regardless of what I say. Mum still can’t grasp or remember that Carers visit each day and have been for nearly 5 years.

I did go to my GP about myself early last year and expressed I may have to just walk away as that is what will drive the change. I will be looking into the option to withdraw all help so that we are prepared for what happens if I just can’t do it anymore. Thank you so much. The alternatives are frightening but a reality for sure.
 

Blissy

Registered User
Jan 29, 2023
174
0
Am so sorry for the problem you are facing. It is a sad reflection on our professionals that you will probably have to put your Mum at risks to gain the help she obviously needs. Not an easy thing for you to do but it does look like your only option.
 

Rosettastone57

Registered User
Oct 27, 2016
1,885
0
My mother in law was like this. She was self-funding and my husband and I organised all her care, including a care home without any involvement from social services whatsoever. She had a history of not engaging with professionals and had mental health issues before the dementia diagnosis. She refused point blank to go into care and wouldn't even leave the house not even to visit our house or the doctor. My husband acknowledged that she needed to go into care but was not prepared to dupe her to go into care.
So we waited for a crisis scenario. Eventually the crisis came and she became ill and went into hospital. Once there we organised a care home for her and she never went back to her own home. The care home manager assessed her in hospital and she told the doctors she was going there to recuperate. We had lasting power of attorney for health which, along with the doctor, we were able to assess my mother in law as having no capacity to understand her situation or even why she was in hospital. Social services were as I said never involved.
She had enough money for about 2 years of funding and a property to sell.

It looks like you may have to wait for a crisis. Some forum members have used an independent social worker for assessment and organising care homes
 

Kated1

Registered User
Feb 17, 2024
21
0
Hello Always Smile. I was in turn fascinated but also horrified by your post as I thought I was the only one with this situation. I am so sorry that this is happening to you and your Mum.
In my situation I now know I have totally shot myself in the foot by arranging full time live in care for my stepmother who was diagnosed with Alzheimer’s Dementia in 2018. her condition has deteriorated leading to her exhibiting physical aggression, verbal abuse , extremely anti social actions and is a danger to herself and others , this has got to an unacceptable level now. The care company are happy to keep sending in carers, probably because we pay them £230 a day plus expenses!
I got social services involved because although I have POA for health and finance my stepmother has absolutely refused to move to a home where she can be kept safe. I needed their support as I cannot actually kidnap her and take her to a place of safety as I understand that would be classed as abuse from me!
I was so confident they would help and had carefully written to social services stating of my concerns, her unpredictable behaviour and why she was a danger to herself and the carers living in her home. It was a long list!
However, the social worker spent 30 minutes with her talking about what she used to do when she was a child and my stepmother happily chatted away about what happened 70 years ago. He didn’t ask her what she had for breakfast that day, what the name of her live in carer was , what day it was etc as I guarantee she would not have been able to answer any questions from the last 20 years!
Anyway, he decided that she had capacity.
When I questioned this and re stated that she is a danger to herself , particularly when she wanders around at night and decides to put on the gas or stand on a chair to check the lightbulbs his suggestion was that we install cctv but of course as she has capacity ( in his opinion) she would have to agree to this.
Later that day I told her that the social worker had suggested cctv and surprise, surprise, she didn’t remember meeting him and said absolutely no to the cctv!
So, I , like you, am living my life holding my breath , waiting for the crisis and hoping that whenever that happens she does not actually kill herself or anyone else at the same time.
 

Always smile

Registered User
Nov 24, 2022
24
0
Am so sorry for the problem you are facing. It is a sad reflection on our professionals that you will probably have to put your Mum at risks to gain the help she obviously needs. Not an easy thing for you to do but it does look like your only option.
Thank you. Yes I’m just one of the many in this position. Such a sad situation for everyone involved.
 

Always smile

Registered User
Nov 24, 2022
24
0
My mother in law was like this. She was self-funding and my husband and I organised all her care, including a care home without any involvement from social services whatsoever. She had a history of not engaging with professionals and had mental health issues before the dementia diagnosis. She refused point blank to go into care and wouldn't even leave the house not even to visit our house or the doctor. My husband acknowledged that she needed to go into care but was not prepared to dupe her to go into care.
So we waited for a crisis scenario. Eventually the crisis came and she became ill and went into hospital. Once there we organised a care home for her and she never went back to her own home. The care home manager assessed her in hospital and she told the doctors she was going there to recuperate. We had lasting power of attorney for health which, along with the doctor, we were able to assess my mother in law as having no capacity to understand her situation or even why she was in hospital. Social services were as I said never involved.
She had enough money for about 2 years of funding and a property to sell.

It looks like you may have to wait for a crisis. Some forum members have used an independent social worker for assessment and organising care homes
Thank you. I’m pleased for your family that things have worked out for the best for you all. I really struggle to see how someone with dementia is deemed to know what’s best for them. I’m sure your MIL feels more settled in herself now.

I’m sure we’re going to be in this position too. I’ve already looked and found a care home that I feel Mum would feel so happy in as she seeks company and reassurance all the time. Mum would still be able to be involved the fun events that happen each day and she would enjoy them. I asked Mum recently when she was having an ill moment (which is so draining as she’s not ill), if she would be better living somewhere else and it was a point blank no. I even said to the GP surgery recently, for my own mental health, could she have a home visit (we’ve never had one). They said, well she’s got here every other time! I cried a long while after that. It’s only me that does these things. The carers don’t drive and the one that does only works certain days. Mum wouldn’t be good with a chaperone service, and to be fair, it would be a battle to get her out of the door, as it is for me…Sigh…and so we go on… Thank you for your advice, I am taking all on board…
 

Always smile

Registered User
Nov 24, 2022
24
0
Hello Always Smile. I was in turn fascinated but also horrified by your post as I thought I was the only one with this situation. I am so sorry that this is happening to you and your Mum.
In my situation I now know I have totally shot myself in the foot by arranging full time live in care for my stepmother who was diagnosed with Alzheimer’s Dementia in 2018. her condition has deteriorated leading to her exhibiting physical aggression, verbal abuse , extremely anti social actions and is a danger to herself and others , this has got to an unacceptable level now. The care company are happy to keep sending in carers, probably because we pay them £230 a day plus expenses!
I got social services involved because although I have POA for health and finance my stepmother has absolutely refused to move to a home where she can be kept safe. I needed their support as I cannot actually kidnap her and take her to a place of safety as I understand that would be classed as abuse from me!
I was so confident they would help and had carefully written to social services stating of my concerns, her unpredictable behaviour and why she was a danger to herself and the carers living in her home. It was a long list!
However, the social worker spent 30 minutes with her talking about what she used to do when she was a child and my stepmother happily chatted away about what happened 70 years ago. He didn’t ask her what she had for breakfast that day, what the name of her live in carer was , what day it was etc as I guarantee she would not have been able to answer any questions from the last 20 years!
Anyway, he decided that she had capacity.
When I questioned this and re stated that she is a danger to herself , particularly when she wanders around at night and decides to put on the gas or stand on a chair to check the lightbulbs his suggestion was that we install cctv but of course as she has capacity ( in his opinion) she would have to agree to this.
Later that day I told her that the social worker had suggested cctv and surprise, surprise, she didn’t remember meeting him and said absolutely no to the cctv!
So, I , like you, am living my life holding my breath , waiting for the crisis and hoping that whenever that happens she does not actually kill herself or anyone else at the same time.
Thank you for your reply. Gosh. It’s frightening how many of us there are in this situation isn’t it. Also your story is just heartbreaking. I really feel for you, but hang on to hope that one day things will change.

Mums Carers suggested a live in night carer for her but I’ve said I’ll think on that one. It would just be a way to keep her st home, and I don’t think it’s in her best interests to be at home. That also says to me they are going to recommend a full time day Carer too at some point. Totally the wrong situation for Mum. She would become even more anxious and upset. I also feel for the caring staff put in these positions, possibly not by choice these days.

Mums anxiety has been through the roof the last 8 years. She’s on maximum medication for it. I’ve now learnt from it. I’ve recently stopped answering the phone. I had to for my own health. It’s only ever a crisis in Mums mind and I can spend a while explaining and calming, only to realise it’s so pointless. Occasionally I answer, but it’s so disheartening. I’ll get the same call 10 mins later. Ongoing. Then Mum moves on. I did answer the phone for many years though and looking back, that’s behind a lot of the damage to myself and family. If there is a real crisis, I would get to know.

I could also change the Carers to those that are mobile to help with appointments and things, but at least with the SS organised help, the Carers have to turn up. My one dread is getting a call to say we can’t do the evening visits/main medication due to staff shortness/illness. I’ve been there, done that for many reasons, and at least I have some reassurance that I can relax in the evenings more now….and the days more to be fair. I do still have to drop everything when something happens that’s not in the Carers remit, like we all do. It’s always me, regardless of what’s going on in my life. In some ways, things are better than they were five years ago, but the cloud of doom is still there and we juggle our lives to keep mum safe, secure and happy in a situation far from ideal…There are key things I do weekly, daily, monthly….and regardless of what anyone says, Mum’s life drives ours. Until those reponsibilites are gone, we can’t live our lives to the full…the best of all the years have gone by….I heard that in a song the other day and it really haunts me, but I’m spurred on by all your suggestions….thank you.
 

Jules22

New member
Apr 8, 2024
7
0
Hi, my previous post nearly 2 years ago was about trying to change things to improve life for everyone. 2 years on and, well, it’s as it was. Mum is still at home. I’m still the only family member on hand. Time feels wasted….its a constant battle to keep everyone happy as you know. I still have no other family support, apart from my husband. I still work full time.

Mums annual Mental Capacity and Care assessment was last summer. She was deemed as capable. Mainly because she has a rehearsed script. It’s all rubbish and based on mixed memories as you all know. I’ve said that. I wasn’t allowed to be at the mental capacity assessment meeting. It took another 8 months for us to get the report and so the next review is nearly another year away. I’ve asked for another review already. The report actually went to Mum. I had no idea of it’s content or that I wasn’t getting a copy. Mum had no idea what it was all about, but I bet the distressed phonecalls I had about her signing the house over to someone has something to do with it. I have my copy now after insisting on one. My name was assigned to certain things without my agreement, but there is no one else anyway.

Mum sits in the chair all day mostly. Does not realise her clothes are dirty. The carers occasionally ask her to change them. She gets bin bags out of the bin and puts back food in the fridge. Not every week to be fair. No comprehension of bacteria or how long the food has been in the bin. She thinks people are out to poison her. Adult Services are aware of all this. She has 4 care visits a day. Is normally in bed before the last one. The Carers don’t mention this very often, infact their reports are glowing. Very different to what I see mostly.

I was asked by AS, does Mum still go back home after worrying the neighbours with something or on one of her numerous trips out the front to check the bins. Should I have said no? Is that what we have to do? I really don’t want a fall to be the catalyst of change for her. That’s the other option.

Mum has her own property to pay for her residential care. Why will AS not accept my decision again that its time? We have POA financial only. Any advice greatly received. I appreciate AS are inundated with cases. It must be a very difficult job emotionally. Another year stretches ahead though…
I feel like I’m in a similar situation as I’m the only person caring for my mom who has refused an appointment at the memory clinic. She is very similar that she sits all day and is regularly eating food that’s out of date and drinks from an old screwed up plastic water bottle to take her medication. She has had carers previously after a fall but stopped them as she didn’t want to pay for them anymore. But I’m on the verge of burn out and need to persuade her to have carers in so I can get a break. I was told by social services that the behaviours you describe are unitentional self neglect and are a reason for them to step in. We also only have power of attorney for finances and to be honest there’s no point trying to get one done for health now because it won’t be in place when it’s needed (now) and she has to have capacity to sign it which in my opinion she doesn’t have. Only yesterday she didn’t know how to physically get in the bath or out of the car. She’s an accident waiting to happen and like you i feel that her having another fall will be the only way she will be discharged to a care home instead of to her house. She too can make out everything is fine when it’s needed but I see her declining on a weekly basis and know what she used to be like when she was completely well.
 

Kated1

Registered User
Feb 17, 2024
21
0
Thank you for your reply. Gosh. It’s frightening how many of us there are in this situation isn’t it. Also your story is just heartbreaking. I really feel for you, but hang on to hope that one day things will change.

Mums Carers suggested a live in night carer for her but I’ve said I’ll think on that one. It would just be a way to keep her st home, and I don’t think it’s in her best interests to be at home. That also says to me they are going to recommend a full time day Carer too at some point. Totally the wrong situation for Mum. She would become even more anxious and upset. I also feel for the caring staff put in these positions, possibly not by choice these days.

Mums anxiety has been through the roof the last 8 years. She’s on maximum medication for it. I’ve now learnt from it. I’ve recently stopped answering the phone. I had to for my own health. It’s only ever a crisis in Mums mind and I can spend a while explaining and calming, only to realise it’s so pointless. Occasionally I answer, but it’s so disheartening. I’ll get the same call 10 mins later. Ongoing. Then Mum moves on. I did answer the phone for many years though and looking back, that’s behind a lot of the damage to myself and family. If there is a real crisis, I would get to know.

I could also change the Carers to those that are mobile to help with appointments and things, but at least with the SS organised help, the Carers have to turn up. My one dread is getting a call to say we can’t do the evening visits/main medication due to staff shortness/illness. I’ve been there, done that for many reasons, and at least I have some reassurance that I can relax in the evenings more now….and the days more to be fair. I do still have to drop everything when something happens that’s not in the Carers remit, like we all do. It’s always me, regardless of what’s going on in my life. In some ways, things are better than they were five years ago, but the cloud of doom is still there and we juggle our lives to keep mum safe, secure and happy in a situation far from ideal…There are key things I do weekly, daily, monthly….and regardless of what anyone says, Mum’s life drives ours. Until those reponsibilites are gone, we can’t live our lives to the full…the best of all the years have gone by….I heard that in a song the other day and it really haunts me, but I’m spurred on by all your suggestions….thank you.
My advice would be to say no to full time live in care or night care as it just cements the idea that your Mum can live at home and you will never escape from the constant responsibility of being her main carer.
Social services and the care company also suggested waking night care for my stepmother but this would more then double the monthly fees I pay which for live in care at the moment which works out to be circa £6500 a month plus the costs of keeping the house going. I would be looking at approximately £14,000 a month plus household costs, far more than a really good care home!!!! She does have money, fortunately, but as I have POA for finances too it would be fiscally inappropriate for me to agree to this ( plus I would still be on the hook for the 20 plus phone calls a day as well as dealing with running every aspect of her daily existence) Full time live in care at home does not take away the responsibilities, in fact I spend as much time dealing with the carers problems as I do with my stepmother! 😱
 

Always smile

Registered User
Nov 24, 2022
24
0
I feel like I’m in a similar situation as I’m the only person caring for my mom who has refused an appointment at the memory clinic. She is very similar that she sits all day and is regularly eating food that’s out of date and drinks from an old screwed up plastic water bottle to take her medication. She has had carers previously after a fall but stopped them as she didn’t want to pay for them anymore. But I’m on the verge of burn out and need to persuade her to have carers in so I can get a break. I was told by social services that the behaviours you describe are unitentional self neglect and are a reason for them to step in. We also only have power of attorney for finances and to be honest there’s no point trying to get one done for health now because it won’t be in place when it’s needed (now) and she has to have capacity to sign it which in my opinion she doesn’t have. Only yesterday she didn’t know how to physically get in the bath or out of the car. She’s an accident waiting to happen and like you i feel that her having another fall will be the only way she will be discharged to a care home instead of to her house. She too can make out everything is fine when it’s needed but I see her declining on a weekly basis and know what she used to be like when she was completely well.
Scary isn’t it. And so unfair and sad. I was told because I do things to help, then the current set up is working and therefore SS don’t need to be more concerned about Mum. Stopping some support by me means things won’t go as well and more things will begin to unravel. I get this now, but it’s difficult in practice isn’t it. I have listened to the phonecalls the last few days, even though I say I wouldn't. We are going to fix a broken cupboard tomorrow, even though I said I wouldn’t react when things happen. It was the same old calls about the same old things, when is she getting her tablets, is anyone visiting (she has no clue the Carers visit), she’s feels so ill, she wants to go to bed. All forgotten when the Carers get there but the impact on me is horrible. I really shouldn’t play them back, but you care, so you do, Nobody else sees this side of things as the Carers rarely mention anything was wrong in their reports. Anyone else who sees the reports, thinks everything is ticking along nicely…

Is there a home visit memory assessment or some other way your mum could be diagnosed at home? Things change then if your Mum is sadly diagnosed with dementia. But for the better, as more support will be offered to you. The GP normally starts the ball rolling. All very difficult, but as I was told in the beginning, it’s going to get a lot worse. And time ticks away so quickly…
 

Always smile

Registered User
Nov 24, 2022
24
0
My advice would be to say no to full time live in care or night care as it just cements the idea that your Mum can live at home and you will never escape from the constant responsibility of being her main carer.
Social services and the care company also suggested waking night care for my stepmother but this would more then double the monthly fees I pay which for live in care at the moment which works out to be circa £6500 a month plus the costs of keeping the house going. I would be looking at approximately £14,000 a month plus household costs, far more than a really good care home!!!! She does have money, fortunately, but as I have POA for finances too it would be fiscally inappropriate for me to agree to this ( plus I would still be on the hook for the 20 plus phone calls a day as well as dealing with running every aspect of her daily existence) Full time live in care at home does not take away the responsibilities, in fact I spend as much time dealing with the carers problems as I do with my stepmother! 😱
Yep, my fears exactly. it wont be happening…if it does, then I’ll have nothing to do with it. We don’t have the funds available as Mum is getting down to minimum savings now…like you say, a residential home is cheaper so SS would opt for that surely…really hope so…

At the moment, the decision for future care would be Mums. As crazy as that is. Adult Services don’t even like talking to me when I ask for a review. I really don’t get it. Mum has been in the system for so many years. I’m very tempted to leave the Adult Services number with her so that when she feels she needs to call me for help, she can call them instead. Maybe they’ll soon get the message that way. She has no clue what support she has, why she has it and why she needs it. No clue at all.
 
Last edited:

DaftDad

Registered User
Apr 8, 2024
64
0
Challenging a capacity assessment? Impossible, in my experience. A hospital discharge coordinator deemed my Dad to have capacity and got him to "agree" to daily home carer visits. The consultant geriatrician on the ward was so horrified by the conclusion of "has capacity", that HE challenged it. Unsuccessfully, I might add.

Despite seeing this same doctor almost daily for three weeks, each visit was met as if it were the first. Dad had zero recollection of prior meetings with the discharge woman and when we sat through the sham of a meeting, it became evident that his "memory" of earlier conversations was actually leading questions and bread crumbing from the coordinator. E.g. "you want to go home, is that right?" "You do everything round the house yourself, right?" "You agreed to a carer visiting you, remember?" He didn't recognise the woman upon her entering the room and about 5min after she left, when we referred to her by name, he said "who?" and had no recollection of the conversation that had lasted 30mins. When I asked him what he recalled from the meeting, he basically said he recalled nothing (unless coached/prompted).

If the consultant on a ward can't challenge a capacity assessment , no-one can. It's curious he is deemed to lack capacity when it's really key (e.g. when needing to consent to invasive medical treatment - deemed not to be able to consent to dental extractions) but apparently magically has capacity whenever questions around care and home are involved.


The extra admin places upon me since this last hospital discharge, caused by the decision by SS people to send him home with carers, is beyond belief.

I have every sympathy for you.
 

Always smile

Registered User
Nov 24, 2022
24
0
Challenging a capacity assessment? Impossible, in my experience. A hospital discharge coordinator deemed my Dad to have capacity and got him to "agree" to daily home carer visits. The consultant geriatrician on the ward was so horrified by the conclusion of "has capacity", that HE challenged it. Unsuccessfully, I might add.

Despite seeing this same doctor almost daily for three weeks, each visit was met as if it were the first. Dad had zero recollection of prior meetings with the discharge woman and when we sat through the sham of a meeting, it became evident that his "memory" of earlier conversations was actually leading questions and bread crumbing from the coordinator. E.g. "you want to go home, is that right?" "You do everything round the house yourself, right?" "You agreed to a carer visiting you, remember?" He didn't recognise the woman upon her entering the room and about 5min after she left, when we referred to her by name, he said "who?" and had no recollection of the conversation that had lasted 30mins. When I asked him what he recalled from the meeting, he basically said he recalled nothing (unless coached/prompted).

If the consultant on a ward can't challenge a capacity assessment , no-one can. It's curious he is deemed to lack capacity when it's really key (e.g. when needing to consent to invasive medical treatment - deemed not to be able to consent to dental extractions) but apparently magically has capacity whenever questions around care and home are involved.


The extra admin places upon me since this last hospital discharge, caused by the decision by SS people to send him home with carers, is beyond belief.

I have every sympathy for you.
Thank you. I really appreciate you taking the time to share this. It’s exactly what I expected, but didn’t want to hear. I’m sorry this is your experience, but I’m very glad you shared it. Very glad. I hope in time that you get the support and decisions you really need. Unfortunately it sounds like we’re all waiting for the inevitable fall or accident that deems a return to home impossible. That’s truly awful.

You have described my Mum exactly. She is led into responses and has zero retainment of recent events or people. Literally within minutes, things are erased. It’s heartbreaking, depressing, devastating.

A previous response suggested withdrawing our support in order to help speed up the next stage of SS, meaning the residential care we feel it’s definitely time for. I’ve been in this caring/supporting situation for nearly 10 years. I’ve been dedicated, but admit to now being affected, disillusioned, beginning to withdraw for my own needs, rather than Mums. Sadly, Mum doesn’t even realise I help her. She has no idea. It makes no difference. That helps me deal with it. I catch her on the video doorbell sometimes, still saying I don’t help, I don‘t visit, I’m trying to get her sent away so that I can have her house. I believe this is triggered by what she sees on TV, dreams, her delusional moments. It’s so upsetting on every level. But it also shows some resilience to Alzheimer’s. She’s strong, still very mobile, able to stand her ground when required. This could really go on years more.…as sad as it is, I wake each day now and check to see if we have another day ahead…..and the Carer report today says we do…
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,325
0
High Peak
Challenging a capacity assessment? Impossible, in my experience. A hospital discharge coordinator deemed my Dad to have capacity and got him to "agree" to daily home carer visits. The consultant geriatrician on the ward was so horrified by the conclusion of "has capacity", that HE challenged it. Unsuccessfully, I might add.

Despite seeing this same doctor almost daily for three weeks, each visit was met as if it were the first. Dad had zero recollection of prior meetings with the discharge woman and when we sat through the sham of a meeting, it became evident that his "memory" of earlier conversations was actually leading questions and bread crumbing from the coordinator. E.g. "you want to go home, is that right?" "You do everything round the house yourself, right?" "You agreed to a carer visiting you, remember?" He didn't recognise the woman upon her entering the room and about 5min after she left, when we referred to her by name, he said "who?" and had no recollection of the conversation that had lasted 30mins. When I asked him what he recalled from the meeting, he basically said he recalled nothing (unless coached/prompted).

If the consultant on a ward can't challenge a capacity assessment , no-one can. It's curious he is deemed to lack capacity when it's really key (e.g. when needing to consent to invasive medical treatment - deemed not to be able to consent to dental extractions) but apparently magically has capacity whenever questions around care and home are involved.


The extra admin places upon me since this last hospital discharge, caused by the decision by SS people to send him home with carers, is beyond belief.

I have every sympathy for you.
This was my experience too, particularly the leading questions. What right does a social worker have to determine capacity when 1. they know nothing about the person and what they were like 'before' and 2. they take every word the person says as gospel? E.g. 'Yes, of course I do everything myself. No, I definitely don't need any help.' As far as I am concerned this is either deliberate playing the system to avoid paying for care or downright professional negligence.

In mum's case, because things had escalated quickly following a fall then hospital, she was still - at that point - able to dress herself nicely and came over as articulate and very able. She wasn't.

Mum was granted a temporary DoLS because she was undiagnosed. A consultant from the MC visited her and decided she had VD. He spoke to me later (at length) on the phone and I described how she'd been getting worse for years - he decided she also had Alzheimers. I also expressed my fears to him about the DoLS SW saying mum may have to move out of the care home if deemed to have capacity. He thought this was ridiculous and as he said, 'She's not going to get any better...' He also confirmed that the SW had the final say on capacity but added that if I had any further 'bother' over this, to refer the SW to him, as he thought mum was definitely in the right place. His final comment was that although the SW decides, 'It would be a very brave social worker who went against the express wishes/advice of a consultant...'

Fortunately it didn't come to that.
 

DaftDad

Registered User
Apr 8, 2024
64
0
This was my experience too, particularly the leading questions. What right does a social worker have to determine capacity when 1. they know nothing about the person and what they were like 'before' and 2. they take every word the person says as gospel? E.g. 'Yes, of course I do everything myself. No, I definitely don't need any help.' As far as I am concerned this is either deliberate playing the system to avoid paying for care or downright professional negligence.

In mum's case, because things had escalated quickly following a fall then hospital, she was still - at that point - able to dress herself nicely and came over as articulate and very able. She wasn't.

Mum was granted a temporary DoLS because she was undiagnosed. A consultant from the MC visited her and decided she had VD. He spoke to me later (at length) on the phone and I described how she'd been getting worse for years - he decided she also had Alzheimers. I also expressed my fears to him about the DoLS SW saying mum may have to move out of the care home if deemed to have capacity. He thought this was ridiculous and as he said, 'She's not going to get any better...' He also confirmed that the SW had the final say on capacity but added that if I had any further 'bother' over this, to refer the SW to him, as he thought mum was definitely in the right place. His final comment was that although the SW decides, 'It would be a very brave social worker who went against the express wishes/advice of a consultant...'

Fortunately it didn't come to that.
Dad was under temporary DoLS too, despite having a formal diagnosis of vascular dementia with Alzheimer's. He was having hallucinations, thinking that, and I quote, "he was being kidnapped by rogue insurance agents" and was physically and verbally aggressive to the staff to the point where they asked for my consent (as PoA) to sedate him. He improved once moved to a quieter ward, but not long after this behaviour, we have a social worker deeming him to have capacity to make decisions about his day to day care and housing situation. It was and is ludicrous.


Similarly, we track Dad now via Ring doorbell and location sharing etc on his phone. There's a falls alarm, mainly triggered by him throwing it on the floor, like at 05:00 this morning, and a door alarm that triggers at the times the local Tesco is shut (his favourite place to wander to, 3, 4 or more times per day). He tries to go and buy his newspaper in the middle of the night/early morning, sometimes three times, e.g. 00:30; 03:00 and 05:00.


All medical and dental people deem him to lack capacity for anything, even the most trivial thing. But social workers say opposite.


I think it's deliberate to avoid having to provide more care to confused people who repeat "I'm fine, I'm independent" like a mantra, many of whom have exhausted relatives in the background, running their finances, household upkeep, medical appointments/prescriptions etc. It's ridiculous.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,325
0
High Peak
I think it's deliberate to avoid having to provide more care to confused people who repeat "I'm fine, I'm independent" like a mantra, many of whom have exhausted relatives in the background, running their finances, household upkeep, medical appointments/prescriptions etc. It's ridiculous.
Worse than that, it's downright dangerous.

The obvious problem - and a frequent scenario - is that the person with dementia gets the maximum of 4 care visits per day but they are on their own all night. As they've probably lost all sense of day and night by then (but hey - they still have capacity, right?) they'll be up at night, risking falls or they'll be off out wandering with all the dangers that brings. They will be alone till the morning carer comes which could mean a lot of anxiety or additional confusion.

It is only when the Bad Thing/Crisis happens that the SW will decide the person doesn't have capacity. Maybe not even then. Common sense seems to have no place in their decisions.
 

ChaceSoto

Registered User
Apr 2, 2024
33
0
You should first get in touch with the group that did the mental capacity check and ask for another assessment. Tell them why you're worried and show them any proof you have.
 

DaftDad

Registered User
Apr 8, 2024
64
0
You should first get in touch with the group that did the mental capacity check and ask for another assessment. Tell them why you're worried and show them any proof you have.
We provided a 6 page letter with accompanying photos; testimony from people who know my Dad well and have done for 30+ years (but are not family) and the geriatric consultant on his ward submitted a complaint about the outcome of the capacity assessment. All that happened was that they doubled down and kept repeating the mantra "capacity can fluctuate" without actually doing anything. All they've done is made my life hell; placed carers at risk from his aggression and left him in a vulnerable position. He's lost a considerable amount of weight since he was discharged via this care assessment but he refuses to eat or drink anything that carers give him. But he has capacity, right? But not if it involves any medical care, he doesn't, apparently.