Social Services don't want MIL to go out!

[LizandNigel]

Hello all , this is an update to a recent post .
Basically MIL lives independantly and is in very good health , spotless home and happy most of the time . Lots of visits from my wife and phone calls throughout day . She has a carer 3 times per day which we pay for and it is working pretty well .
The one thing she does to annoy social services is that she walks - 3 5 times per day . Never been lost, reported lost , injured or mugged etc .
Around 1.7 times per month on average , a member of the public , not able to understand her (she will ask about " the children " for her mum ) feels they need to call the police - no problem with this , but as stated she's never failed to come home . Occasionally the police , who have been great on the whole, feel the need to call paramedic , who on 2 occasions in 7 years , have taken her to A and E - we have a massive problem with this but thats not my issue (this weekend she was taken home after being out at 1am - very unusual for her but happened a few times over the 7 years - police sat with her until 4am then called paramedic , without telling us . We picked her up at A and E - they released her in an hour when her blood pressure dropped to normal - she was stressed and pink faced at being " detained" ) . Outcome? 79 year old lady not slept since 7am the previous day , basically awake for 25 hours straight .

Here's the issue - on Monday we got a letter from social services , they did not speak to us to find out what happened at the weekend , declaring they would appoint a Care Act Advocate ,a Social Worker, do a mental capacity assessment etc . My wife , in floods of tears again , we responded by asking what the purpose was, why hadn't they spoken to her , why appoint a new social worker when she had been de-allocated a social worker in September , having agree with the police Safeguarding lead that we would take full responsibility if she came to attention and all we asked was to be notified .

Today we got a very curt reply, not explaining why they had contacted us as carers but advising us that they were doing this in case of neglect or abuse (not physically restraining MIL ?) .They also told us they will complete a " COP1" ( I now know its Court of Protection 1 form but what a way to speak to layperson) .
my next move is to try and speak to someone more senior as this is having a catastrophic effect on my wife who has coped with caring since the beginning but now being ground down to tears by incompetent social workers . It may sound ridiculous but it feels to us both , a personal , punishing way of dealing with us - a way of saying if you dont do exactly what we say we will make it hard for you . Sounds mad but thats truly how we both feel .

If anyone has advice or experience they can share I would be so grateful . thank you Nigel

 

[Kevinl]

The LA would seem to have significant evidence that she may be at risk or vulnerable from the police, the paramedics and the public.
If they apply for deputyship of her affairs using a CoP1 then it would imply they or the independent advocate will become her deputy. What happens after that is up to them.
Given that she is wandering and has come to the attention of the social services unless you step in I don't see the SS have any choice but to take these actions.
It's interesting that she's talking about "the children" my wife used to do that mid/late stage and I've seen a few other women do it too. It's never their own children it's some mythical children who need to be found and cared for, kept away from the road or the river. To anyone familiar with AZ that symptom may ring alarm bells.
Sorry that's not too helpful but you need to be working with the SS or they'll figure you're part of the problem not the solution and do it their way.
K

 

[father ted]

I can understand that you feel aggrieved that your MIL who enjoys walking in her community and has remained safe thus far now has the interference of social services but to me your post says it all.

She has never been lost, mugged or injured- so far.
She was found out at 1 am, this has never happened before.
But dementia doesn't remain static and you are obviously aware of all the things that could go wrong.
A vulnerable old lady should not be out at 1am and the fact that the police, paramedics, A/E and now social services are all now involved should make you reassess your MIL's situation which cannot stay as it is.
Sorry to sound so condemnatory but to someone not involved and from what you have said it sounds alarming.

 

[Rosettastone57]

Hello all , this is an update to a recent post .
Basically MIL lives independantly and is in very good health , spotless home and happy most of the time . Lots of visits from my wife and phone calls throughout day . She has a carer 3 times per day which we pay for and it is working pretty well .
The one thing she does to annoy social services is that she walks - 3 5 times per day . Never been lost, reported lost , injured or mugged etc .
Around 1.7 times per month on average , a member of the public , not able to understand her (she will ask about " the children " for her mum ) feels they need to call the police - no problem with this , but as stated she's never failed to come home . Occasionally the police , who have been great on the whole, feel the need to call paramedic , who on 2 occasions in 7 years , have taken her to A and E - we have a massive problem with this but thats not my issue (this weekend she was taken home after being out at 1am - very unusual for her but happened a few times over the 7 years - police sat with her until 4am then called paramedic , without telling us . We picked her up at A and E - they released her in an hour when her blood pressure dropped to normal - she was stressed and pink faced at being " detained" ) . Outcome? 79 year old lady not slept since 7am the previous day , basically awake for 25 hours straight .

Here's the issue - on Monday we got a letter from social services , they did not speak to us to find out what happened at the weekend , declaring they would appoint a Care Act Advocate ,a Social Worker, do a mental capacity assessment etc . My wife , in floods of tears again , we responded by asking what the purpose was, why hadn't they spoken to her , why appoint a new social worker when she had been de-allocated a social worker in September , having agree with the police Safeguarding lead that we would take full responsibility if she came to attention and all we asked was to be notified .

Today we got a very curt reply, not explaining why they had contacted us as carers but advising us that they were doing this in case of neglect or abuse (not physically restraining MIL ?) .They also told us they will complete a " COP1" ( I now know its Court of Protection 1 form but what a way to speak to layperson) .
my next move is to try and speak to someone more senior as this is having a catastrophic effect on my wife who has coped with caring since the beginning but now being ground down to tears by incompetent social workers . It may sound ridiculous but it feels to us both , a personal , punishing way of dealing with us - a way of saying if you dont do exactly what we say we will make it hard for you . Sounds mad but thats truly how we both feel .

If anyone has advice or experience they can share I would be so grateful . thank you Nigel

Sounds like SS are doing their job. I've no experience of wandering with my MIL but I have to agree with other posters. This is a progressive condition where you need to look at the bigger picture and work with SS. PWD should not be out in a vulnerable situation where they have contact with police etc and end up in A and E. It's sounds like it's only a matter of time before something else happens. You may feel affronted but to say that SS want to stop her going out quite frankly misses the point. It's her best interests that are important

 

[Lawson58]

I too would be concerned about your mum wandering around in the early hours of the morning. The fact that the police felt that they had to stay with her until 4.00 am and then called the paramedics speaks volumes about their concern for her.

Social Services appears to think that if your mother is roaming the streets at night (and this may not be the first time but the only time you are aware of) then someone has to take responsibility for her. While she has been living independently and doing well, she may be approaching a time when you are going to have to be a bit more realistic about her welfare. Waiting for someone to 'notify' you if there is a problem is a bit like closing the stable door after the horse has bolted. So being aware that there have already been some problems, you need to be proactive and step up to the mark before something worse happens to her, especially if you don't want Social Services stepping in.

 

[Beate]

Oh thank God, I'm not the only one thinking that then. I was hesitant to post as I don't want to offend the OP, but really, wanderings including in the middle of the night, involvement of police and paramedics, and you think that Social Services are heavy handed? They have duty of care for a vulnerable person at risk, and wandering is incredibly risky. How do you know something isn't going to happen next time? Would you be able to live with yourself if it did? When my OH started to wander and get lost (thankfully never at night), I realised this was a crisis waiting to happen so I contacted SS urgently who found him a lovely Day Centre and sitters etc to keep him safe, occupied and socialising while I couldn't be with him. And that is their job.

 

[LizandNigel]

OP here - thanks for the frank responses but some amazing assumptions.
1st " wandering " she has never been lost , or asked to be found . She walks around 1000 times a year , base don at least 3 walks a day
All walks ever encountered by the police were within .9m of her home (thanks Google Maps)
There is no other " neglect " concern whatsoever from Social Services .
It is impossible to stop or deter her if she really has to go out , and her walks in the day time are perfectly safe, even if the police sometimes get called by a well-meaning passerby it means 99% of her walks do not involve the police. it feels like we are saying someone who cannot vocalise her address or make sense to most people are now allowed out .

Walks after nine o'clock are rare for her - yes we are "concerned" but balancing the risk against the misery for her of being stopped from going out (be very clear , that would mean physical restraint and/or sedation in my MIL's case ) we feel the alternative (forced in a care home which she says she would never want ) is worse .

We are now looking into live-in night time care - Social Services have not called us to discuss , only summonsed us to meetings and now threatened us with Sort of Protection . If we get night time live-in in place (we don't know if she would cope with a strange person in the house ) we will insist that she is not impeded when she goes for daytime walks - all of which are about 20-45 mins and very close to home . As I said her road safety was assessed as good . If we balance the right to walk , at least during the day , with being in a care home she would not want, we know that it is better to tolerate small risk and for her to get the benefit of working off her anxieties and using energy .

I am sure you all know that going out at night is but one of the concerns we have - if she said she wanted to go into a home it would be so easy - but instead , like most carers we carry on year after year and will do so until MIL either wants a care home or is a real danger to herself . At the moment she is a nuisance to Social Services (not to. the police, not the memory clinic , GP, or Mental health Team,nieghbours, shopkeepers, dog walkers she rambles on to ) just Social Services .
best wishes
Liz and Nigel

 

[nitram]

At the moment she is a nuisance to Social Services (not to. the police, not the memory clinic , GP, or Mental health Team,nieghbours, shopkeepers, dog walkers she rambles on to ) just Social Services .

I commiserate with what you are saying and your position.
The problem stems from the fact that the Local Authority have a legal responsibility to protect a 'vulnerable adult at risk to themselves and/or others'.

Especially if you introduce live-in night time care you could insist on a formal best interests meeting - get your ammunition ready - evidence counts.

 

[DeMartin]

I’m sure MIL enjoys her walks, but the world is unfortunately not as nice as it was, a lone elderly lady can be seen as “target” by low life and worse adjectives people. People have been concerned, police involved.

Can you find alternatives, someone to join her on a walk.

 

[love.dad.but..]

My dad was a wanderer and if given the chance would have certainly been out and about at night...looking to find his mother! I lived with him so was able to stop him in order to keep him safe. I tried live in care for him but unfortunately that didn't work out so I can sympathise. However I would like to add that if you are going to have night sitters and your MIL wants and tries to go out, How exactly are they going to be able to stop her within their job remit. It is different for a family member to deal with her in their different capacity but I doubt other than agreeing to go with your MIL at 1am and carers will not and should not be expected to do that but also how are they going to be able to maintain a fundamental duty of care to your MIL, how can they physically stop her? I am not sure how that arrangement will resolve the problem for SS satisfaction or your peace of mind.

 

[Witzend]

The LA would seem to have significant evidence that she may be at risk or vulnerable from the police, the paramedics and the public.
If they apply for deputyship of her affairs using a CoP1 then it would imply they or the independent advocate will become her deputy. What happens after that is up to them.
Given that she is wandering and has come to the attention of the social services unless you step in I don't see the SS have any choice but to take these actions.
It's interesting that she's talking about "the children" my wife used to do that mid/late stage and I've seen a few other women do it too. It's never their own children it's some mythical children who need to be found and cared for, kept away from the road or the river. To anyone familiar with AZ that symptom may ring alarm bells.
Sorry that's not too helpful but you need to be working with the SS or they'll figure you're part of the problem not the solution and do it their way.
K

My mother went through a phase of being anxious about 'the children', and needing to get back to them, and it was her own children she was talking about - I knew this from certain words she used - it was her two youngest of some 50 years previously. I used to be able to pacify her by saying that it was OK, my elder sister was looking after them, as she often had.

 

[Lawson58]

I am somewhat mystified about your assumptions that all of your mum's walks are safe and that they will continue to be so because that is something you cannot predict. And you also do not know how often your mother goes out at night or at what times she does. So you really have no idea of what risk she is in.

London in winter - do you even know if she is dressed appropriately?

And until you know that, you cannot balance anything. It is a lovely idea to want Mum to be happy but at what cost? There are so many dreadful possibilities that I am a little surprised you cannot see them.

 

[Sammie234]

My husband still currently goes out on his walks with the dog but have noticed that he has started to tend to leave it to me quite often to either go with him or take the dog myself, losing confidence I think, but I still worry none the less, what would happen if he forgets where he is going or gets disoriented I tend to trust the dog to get him home, sorry but if he started to wander off and tried getting out of the house I would be worried to death especially at 1 in the morning.

 

[Duggies-girl]

My dad walks round the block everyday for something to do. It's a very safe area, few cars and a totally residential area of his village, lots of elderly in bungalows and families. I would hate to stop him as he enjoys it. I would not want him going out after dark though, mainly in case he tripped or got lost.

 

[Moggymad]

If I understand this correctly your MIL is fitting in her walks in between the carers visits & your wife's visits. So it sounds like she is home whenever the carers/ her daughter are due which means she must be time aware then. If someone is with her does she still have the need to go out? If not then to me it seems that being on her own is the issue & an overnight carer may work well to prevent any evening excursions. When she asks about the children is she actually looking for them? And is this why she ventures out so often? PWD can appear quite normal for the most part when doing their normal day to day things that are routine but that can mask a deterioration that may not be so noticeable to yourselves. I understand what you are saying but do think her general safety is a concern. Perhaps as has been suggested someone could try to accompany her.

 

[jenniferpa]

Hi @LizandNigel welcome to talking point.


Looks like you have had a bit of a rough landing here. I'm sorry if you feel besieged, and I don't blame you,. The truth is though, the carers posting are only too well aware of the balancing act that you are having to deal with.

I don't think there is one carer who wants to unreasonably restrict the person they are caring for. But the reality is: what is unreasonable? Mostly we tend as a society to take the position that: you want to make stupid decisions? Well that's your right. But I think the issue that a lot if us have is: when is it right to take that decision out of your (as in, a person with dementia) hands.

There is if course no one right answer here. Sometimes we see people equating a decision to allow a person with dementia autonomy to allowing a child to make unwise decisions and while I get that, it obviously isn't the same. A child has x capacity but a person with dementia can ( in fact probably had) varying capacity. What might be right at one hour isn't right at another. Constantly moving goal posts.

And I think that is the concern expressed here: she might be fine today, but is it responsible to think she will be fine tomorrow?

You state that she isn't bothering police/ems/neighbours. Well maybe not to the point that they are making an issue about it. But I beg you to consider: there is a massive difference between people saying "no problem" and there actually not being a problem. Confronted with a confused neighbour, I'd say that. But I would take a different position if I had to deal with it several times. Not because I disliked that person or they were impinging on my life but because I was concerned.

No it's not possible to cover every possibility. But you already know she is wandering and that she is confused. You feel that social services are inserting themselves unnecessarily. But consider this: would you feel the same if it wasn't your parent? If you were the neighbour/ police officer/passerby dealing with a confused elderly person?

I'm sorry about the situation you find yourself in.

 

[Lawson58]

My husband still currently goes out on his walks with the dog but have noticed that he has started to tend to leave it to me quite often to either go with him or take the dog myself, losing confidence I think, but I still worry none the less, what would happen if he forgets where he is going or gets disoriented I tend to trust the dog to get him home, sorry but if he started to wander off and tried getting out of the house I would be worried to death especially at 1 in the morning.

My OH walks every day with our dog and I have no concerns at the moment. The dog knows every inch of our neighborhood and her appearance suggests to others that she could be quite fierce ( which she isn't). He walks only in daylight and at the moment he is OK but I know the day will come when he won't be able to do it, probably because his heart is getting worse.

But would I let him walk around at night? No way, not even with the dog!

 

[Louise7]

It isn't clear from your posts whether the frequent walking was something your MIL did prior to dementia or whether it has started due to dementia? In a previous thread you said that she always goes to the same 4 or 5 places and sometimes she is confused and other times 'she is simply walking for the good of her health and pleasure'. Has she told you that or is it an assumption? Are the places she goes to those where there are people, or perhaps where she has had a past connection to?

Without knowing the level of your MIL's dementia (how long has she been diagnosed?) it's difficult to be specific but it's likely that she is lonely/scared on her own, which is making her go out when no one else is in the house. When my Mum had a short spell of leaving the house she told neighbours she was looking for her Mum (she meant me). The fact that your MIL is approaching strangers and asking about 'the children' suggests that she is lonely, not simply walking for her health and pleasure. Although the Police found your MIL at 1am you don't know exactly how long she had been out of the house for. It is getting colder and darker earlier and you say that your Mum sometimes doesn't take her keys with her. She is clearly at risk each time she leaves the house and you can't keep relying on the neighbours to look out for your MIL and let her back in to the house. You say that you will carry on "until MIL either wants a care home or is a real danger to herself". Your MIL is clearly already a real danger to herself, and people with dementia rarely say that they want a care home - those that care for them have to make that decision for them, as difficult as that is.

In your previous thread someone here suggested that you look into day centres - have you done this? It may be that having company during the day will stop your MIL feeling the need to go walking, and SS may consider that you are at least trying options to keep your MIL safe during the day. Leaving things to continue as they are, in your words 'having a massive problem' with the Police calling paramedics, and being against social services involvement, is not the way to go if you want your MIL to remain safe and living in her own home. Jenniferpa has posted wise words. Please consider the position you are adopting. If it was my Mum I wouldn't be happy to take a risk of any kind - I'd be trying everything possible to keep her safe from potential harm, which is what social services are trying to do. Having a live-in carer at night but allowing your MIL to continue to go out on her own during the day may help to reduce some of the risks but will not remove them all.

 

[Bod]

OP here - thanks for the frank responses but some amazing assumptions.
1st " wandering " she has never been lost , or asked to be found . She walks around 1000 times a year , base don at least 3 walks a day
All walks ever encountered by the police were within .9m of her home (thanks Google Maps)
There is no other " neglect " concern whatsoever from Social Services .
It is impossible to stop or deter her if she really has to go out , and her walks in the day time are perfectly safe, even if the police sometimes get called by a well-meaning passerby it means 99% of her walks do not involve the police. it feels like we are saying someone who cannot vocalise her address or make sense to most people are now allowed out .

Walks after nine o'clock are rare for her - yes we are "concerned" but balancing the risk against the misery for her of being stopped from going out (be very clear , that would mean physical restraint and/or sedation in my MIL's case ) we feel the alternative (forced in a care home which she says she would never want ) is worse .

We are now looking into live-in night time care - Social Services have not called us to discuss , only summonsed us to meetings and now threatened us with Sort of Protection . If we get night time live-in in place (we don't know if she would cope with a strange person in the house ) we will insist that she is not impeded when she goes for daytime walks - all of which are about 20-45 mins and very close to home . As I said her road safety was assessed as good . If we balance the right to walk , at least during the day , with being in a care home she would not want, we know that it is better to tolerate small risk and for her to get the benefit of working off her anxieties and using energy .

I am sure you all know that going out at night is but one of the concerns we have - if she said she wanted to go into a home it would be so easy - but instead , like most carers we carry on year after year and will do so until MIL either wants a care home or is a real danger to herself . At the moment she is a nuisance to Social Services (not to. the police, not the memory clinic , GP, or Mental health Team,nieghbours, shopkeepers, dog walkers she rambles on to ) just Social Services .
best wishes
Liz and Nigel

At the very least, at this point you need some kind of monitoring as to her movements, in and out of the house. Cameras, checked at least twice daily. GPS tracker in coat.
Just asking her "Did you go out today?" will not do, and will show to SS that you do not understand the situation.
If you can show exactly how many times, for how long, and where she goes, then the situation is fully known by all parties. Appropriate decisions can be made by everyone.

Bod

 

[jugglingmum]

You state that she isn't bothering police/ems/neighbours. Well maybe not to the point that they are making an issue about it. But I beg you to consider: there is a massive difference between people saying "no problem" and there actually not being a problem. Confronted with a confused neighbour, I'd say that. But I would take a different position if I had to deal with it several times. Not because I disliked that person or they were impinging on my life but because I was concerned.

My understanding is that if the police have to deal with a 'vulnerable' adult, this is an automatic social services report, this was what I was advised by the police when they dealt with my mum, and they let me know that they would be reporting it and I duly got a phone call from SS.

You say it isn't bothering the police but they phoned a paramedic and arranged for her to go to hospital so they must have concerns, they certainly wouldn't do this lightly. Just like SS they legally have an obligation to ensure a vulnerable adult is kept safe. Do the police have your mum logged as a vulnerable adult with your contact details? This should enable them to contact you, and I know many people on here take this action.

There are many many threads on TP about wandering (I'm sorry if you don't like this term, but if she is out at 1am this is what she is doing) and most of them are about how to keep the PWD safe. However, often the PWD presents as OK whereas if strangers are dealing with your mum, she must appear confused to them and in need of help, so that would ring massive alarm bells to me.

You comment on her being 'a real danger to herself' - most people would think being out in winter at 1am makes someone a real danger to themselves, and would take every step in their powers to make sure it doesn't happen again.

PWD do not understand the issues as their brain cannot process information anymore, their logic doesn't work, so of course your mum is never going to agree to going into a home. They are also very good when in company of operating in 'hostess mode'.

Things were massively wrong for my mum, I didnt' realise as she managed the 3 hour drive to my house and seemed ok most of the time she was there. Knowing what I know now about dementia, I should have removed her from her home at least 12 months before I did.

As is often said on here, sadly this is the best your mum will be, she will slowly get worse.

If you want to not have this taken out of your hands you need to cooperate and work with SS, stay with her overnight until you can get a live in night carer, arrange for someone to take her out for a walk on a daily basis. As a minimum she needs a tracker (many thread on here about this - it shows you are taking action).

I do not subscribe to the keeping a PWD in their own home is maintaining their independence, it is just consigning them to an existence of loneliness and confusion, often with severe anxiety whilst they are on their own, and looking for the children is a manifestation of this anxiety.

Many would count mum being found at 1am and taken to hospital as a lucky wake up call and thankful it wasn't worse, if it happens only once more the outcome could be very very different.