Social worker's assessment has made me feel worse!

[Suzie G]

Mum was diagnosed 3 years ago. After a significant deterioration in mum's dementia since Christmas, I asked her GP for help. He put me in touch with Social Services and yesterday mum had an assessment.
Background info: I live 50 miles from mum. She's still in her own home. I'm her only carer/contact, no other friends/family. I gave up my job 6 months ago to care for her. I currently visit every other day, do her food shop, keep the house clean etc. I never know which 'mum' will greet me. She's incredibly stubborn and confrontational. I have sole POA and last week out of the blue mum appeared to realise I have control of her finances. Verbally abused me down the phone, calling me a thief etc. So far, so normal. She currently loses keys/purse several times a week. I want to keep her at home for as long as possible and at this moment I think she could be classed as NOT at risk....yet. But she only manages BECAUSE I visit every other day. My intervention means she is doing ok, but I want to know what steps I should be taking for when the day comes that she needs residential care, hence the assessment yesterday. She refuses all other care options...won't let carers in the house, won't go to a day care centre.

So, yesterday, social worker comes, asks a million questions which mum just answered in the affirmative, regardless of the truth. Lots of confabulations which the SW just appeared to accept as truth. I intervened on a few occasions to tell it like it really is. Mum got upset. Refused all suggestions of help from SW- day care, visiting carers. Mum says there is nothing wrong with her and there is no way she going in a home. SW promised that isn't the case and then just left, saying "oh well I can't force you"..
I had to ask if I'll get a copy of her 'report'. She said mum's not too bad really and managing really well. SHE DOESN'T SEE WHAT I SEE!!
10 minutes after she leaves, I find slippers covered in faeces hidden under the bed. At 8pm last night just after I got home, mum rings me saying she doesn't know where she is or who she is.......
I feel that the SW visit was a waste of time. I asked what happens next...a shrug of her shoulders. Mum's fine at home apparantly!
So here's my dilemma:
Ok, so I'll just carry on looking after her on my own until I'm having to go every day. Then when I'm not there at some point, mum has a crisis - goes out, gets lost, has a fall, sets the house on fire - whatever - then will Social services do something and accept she needs to be in a home? Do we really have to wait until something awful happens? If I am the only person saying she needs full time care, mum refuses to leave her home, what then? I have POA and she does NOT in any way have mental capacity, but that seems to have been ignored. I'm not saying she needs full time residential care now but she will in the near future and everything takes time to set up, doesn't it?......how does this happen if both mum and Social Services say she's fine at home!??
It feels like I'm just left to get with it until mum has some awful crisis. Is there no other way? I really thought Social Services would be a lifeline, now I feel desperate and even more anxious about the future. Any advice would be so very much appreciated...

 

[marionq]

Why not write to the officer in charge at your local sw office and tell them just what you’ve told us. Your Mum is in denial and you’re concerned about her welfare as she won’t accept any other input and you already feel overwhelmed.

They have a responsibility to you as well as to your Mum.

 

[father ted]

SuzieG,
It is very frustrating and hate to sound cynical- it doesn't just feel like you are on your own- you are.

As you say your Mum copes because you are there every other day. Step back just for a few days and it will all go awry. Your Mum doesn't want carers or to go to a day centre and really that is realistically all they would be offering to a maximum of 4 visits a day and your Mum's need would probably not qualify for that.
My Mum lived with me but I had caring responsibilities for my disabled daughter and could not cope caring for two whilst my Mum refused to have carers and stopped attending her day centre and I knew that would be all they could offer.
Also the distance you are travelling is not sustainable while running your own home, caring for family and working. I would suggest you start looking at homes and make a short list of the ones you like. Put your Mum's name down and then play it by ear. You sound exhausted and frustrated and as you carry on your capability to do what you have been doing will cease long before your Mum's problems but in the meantime maybe just arrange for carers to come in and on the first few occasions be there to direct them to what they need to do and maybe with your being there Mum will tolerate it. Good Luck.

 

[Suzie G]

SuzieG,
It is very frustrating and hate to sound cynical- it doesn't just feel like you are on your own- you are.

As you say your Mum copes because you are there every other day. Step back just for a few days and it will all go awry. Your Mum doesn't want carers or to go to a day centre and really that is realistically all they would be offering to a maximum of 4 visits a day and your Mum's need would probably not qualify for that.
My Mum lived with me but I had caring responsibilities for my disabled daughter and could not cope caring for two whilst my Mum refused to have carers and stopped attending her day centre and I knew that would be all they could offer.
Also the distance you are travelling is not sustainable while running your own home, caring for family and working. I would suggest you start looking at homes and make a short list of the ones you like. Put your Mum's name down and then play it by ear. You sound exhausted and frustrated and as you carry on your capability to do what you have been doing will cease long before your Mum's problems but in the meantime maybe just arrange for carers to come in and on the first few occasions be there to direct them to what they need to do and maybe with your being there Mum will tolerate it. Good Luck.

 

[Suzie G]

Thanks marionq, I have to speak to the Social Worker tomorrow so I think I'll tell her what I've posted here and see what she says. If necessary I'll take it further. Thank you!
Father Ted, thanks. I'll start researching homes in this area. But if mum refuses to move into a home, and Social Services don't agree it's what she needs, where do I go from there? Can someone go into a care home if social services don't agree to it? Does it actually go through them or is it something i can arrange without their intervention? Thanks for the kind words!

 

[jen54]

Mum was diagnosed 3 years ago. After a significant deterioration in mum's dementia since Christmas, I asked her GP for help. He put me in touch with Social Services and yesterday mum had an assessment.
Background info: I live 50 miles from mum. She's still in her own home. I'm her only carer/contact, no other friends/family. I gave up my job 6 months ago to care for her. I currently visit every other day, do her food shop, keep the house clean etc. I never know which 'mum' will greet me. She's incredibly stubborn and confrontational. I have sole POA and last week out of the blue mum appeared to realise I have control of her finances. Verbally abused me down the phone, calling me a thief etc. So far, so normal. She currently loses keys/purse several times a week. I want to keep her at home for as long as possible and at this moment I think she could be classed as NOT at risk....yet. But she only manages BECAUSE I visit every other day. My intervention means she is doing ok, but I want to know what steps I should be taking for when the day comes that she needs residential care, hence the assessment yesterday. She refuses all other care options...won't let carers in the house, won't go to a day care centre.

So, yesterday, social worker comes, asks a million questions which mum just answered in the affirmative, regardless of the truth. Lots of confabulations which the SW just appeared to accept as truth. I intervened on a few occasions to tell it like it really is. Mum got upset. Refused all suggestions of help from SW- day care, visiting carers. Mum says there is nothing wrong with her and there is no way she going in a home. SW promised that isn't the case and then just left, saying "oh well I can't force you"..
I had to ask if I'll get a copy of her 'report'. She said mum's not too bad really and managing really well. SHE DOESN'T SEE WHAT I SEE!!
10 minutes after she leaves, I find slippers covered in faeces hidden under the bed. At 8pm last night just after I got home, mum rings me saying she doesn't know where she is or who she is.......
I feel that the SW visit was a waste of time. I asked what happens next...a shrug of her shoulders. Mum's fine at home apparantly!
So here's my dilemma:
Ok, so I'll just carry on looking after her on my own until I'm having to go every day. Then when I'm not there at some point, mum has a crisis - goes out, gets lost, has a fall, sets the house on fire - whatever - then will Social services do something and accept she needs to be in a home? Do we really have to wait until something awful happens? If I am the only person saying she needs full time care, mum refuses to leave her home, what then? I have POA and she does NOT in any way have mental capacity, but that seems to have been ignored. I'm not saying she needs full time residential care now but she will in the near future and everything takes time to set up, doesn't it?......how does this happen if both mum and Social Services say she's fine at home!??
It feels like I'm just left to get with it until mum has some awful crisis. Is there no other way? I really thought Social Services would be a lifeline, now I feel desperate and even more anxious about the future. Any advice would be so very much appreciated...

I cant see how an assessment can be made in such a brief time
My mum goes into hostess mode and is so convincing.
The gp last year was greeted by her saying nothing was wrong,that she dud the shopping and didn't need care,or aids in the house, the gp did a shirt test,and mum failed each question..retorting that she didn't care about nonsense like how old she was,or who the prime minister was..
The gp asked me after,if mum dud go shopping etc..i said not..
I was asked at the time if mum was a danger to herself ir others at home..at that piu t

 

[Suzie G]

Yep. Mum has done the whole 'hostess' mode before, but yesterday she was awesome to listen to and watch. Then utterly dazed and confused after.
This forum is so helpful....until a few weeks ago I'd never heard of 'hostess' mode, 'confabulations' and a host of other things. I mentioned confabulations to the Social Worker but could tell by the blank response she didn't have a clue. Why can't an assessment be carried out by someone trained in Dementia who can unpick mum's responses and see through the make-believe? I suppose i just can't accept that we have to wait for some awful crisis to get help. I can see the way this is going and it's utterly terrifying....

 

[Scriv]

Sadly we have had this with a relative refusing help and in denial. Unfortunately there was nothing that the SWs could do as they just can't force themselves in or force them to accept help - until it becomes a crisis, often when they start getting taken into hospital for one thing or another like falls or accidents. That's what happened in our case, very sadly, and the couple both ended up being taken into a care eventually, him as a confused and vunerable adult and it was all very sad and upsetting for us all.

I do feel for you so much... I do suggest that you get the SW team and the GP on board by asking them to record and note all your detailed concerns and also all about your mum's denial and how reality is different from what she tells people she can do. Keep a log too. This happens so often, SWs must be very used to it.

Re mental capacity, I believe that it is not easy to get a diagnosis that a PWD does not have mental capacity to enable you to override her decisions or force her to do something she doesn't want to do - until the crisis finally happens. This whole thing is such a slow and stressful process.

Good luck and surround yourself with as much support as possible on this whilst dealing with it. Take care xx

 

[Moggymad]

Yep. Mum has done the whole 'hostess' mode before, but yesterday she was awesome to listen to and watch. Then utterly dazed and confused after.
This forum is so helpful....until a few weeks ago I'd never heard of 'hostess' mode, 'confabulations' and a host of other things. I mentioned confabulations to the Social Worker but could tell by the blank response she didn't have a clue. Why can't an assessment be carried out by someone trained in Dementia who can unpick mum's responses and see through the make-believe? I suppose i just can't accept that we have to wait for some awful crisis to get help. I can see the way this is going and it's utterly terrifying....

Hi @Suzie G I am gobsmacked that the social worker didn't appear to know about confabulations. Presumably she didn't know about hostess mode either? The SW who came out to see my mum told me about confabulations. Mum was in full flow. I think it's essential they have dementia knowledge & think you should definitely follow it up with a phone call explaining your concerns. If your mum would be self funding you do not need to involve social services in looking for a care home. I don't have the savings figures to hand but hopefully someone who does will advise or a search on the forum will give you more info.

 

[Amy in the US]

Suzie, I'm sorry to hear of your lousy experience with the social worker.

I do know how hard it is to cope, when the PWD (person with dementia) is so good at hostess mode and so convincing, and of course the anosognosia doesn't help one little bit, either. I remember all the times I thought I was losing my mind and the frustration of trying to get accurate information to the people who needed it. It's really hard and I am sorry.

If and when the time comes to consider residential care (be that sheltered housing, extra sheltered housing, a care home, or whatever), please look into options near where YOU live.

My mother lived 100 miles away and I was killing myself with the trips there and back. It's a long story, but I ended up waiting for the crisis, and then when it was deemed necessary for her to go into full time care, at first I was looking at a place near where she lived, as that city had been her home for over 50 years. Finally a social worker firmly told me I should move her to be closer to me. I really struggled with it (and even now, three years later, I still sometimes wonder if I should have chosen a place there, even though I know that wouldn't have worked), but we did, and now she is a 15 minute drive from me. It has made a HUGE difference, to be freed of those drives and the anxiety of being so far away.

I will say that it is not easy to step back and wait for a crisis, but sometimes that is what has to happen, in order to get help. I don't know if that is the case for you, or how to advise you to deal with social services, but the UK residents here will know better than I what recourses you have. I will say, please don't be afraid to make a nuisance of yourself. Sometimes we have to yell louder than we would like (and cry and scream and do whatever else is needed), to get help.

I also know that some of the key phrases to use are: vulnerable adult at risk, duty of care, and did I mention vulnerable adult at risk? In the UK, you do NOT have duty of care, the state does, and don't be afraid to remind them of this.

As far as the GP, if your mother will agree to let the GP discuss her care with you, great. If not, the GP may not talk to you about her care, but will still listen to you. Start keeping a diary or list of everything that is a problem, and provide regular updates to the GP. At an appointment, sit or stand either behind your mother, or right next to her but slightly pushed back, so you are not in her direct line of sight. Use facial expressions and body language to indicate to the GP when something she is saying, is not accurate. This way you don't have to contradict your mother, right in front of her. You can also take a copy of your concerns and update to the appointment, and have the receptionist/nurse give it to the GP ahead of time, or hand it over discreetly (here is that paperwork the office needed).

I really hope you can get some help before there is a crisis. I'm so sorry you are going through this.

 

[LouiseB55]

Suzie G. This is exactly my situation! So frustrating, Mum told the social worker she can manage perfectly well so they want her to go home from the nursing home with an increased care package. I have been caring for Mum for 2 years, several visits most days and I'm exhausted. I've told social services if she goes home I'll visit once week as her daughter, not as cook, cleaner and personal carer. Caring is a choice! It feels awful but I agree with other TP posters, there is a point at which you have to stand back and wait for the inevitable crisis. Good luck.

 

[Suzie G]

Thanks to everyone for the positive comments. It's good to read your thoughts and some of the suggestions I will definitely follow up. I keep a diary of everything that happens and I'm going to speak to the Social worker tomorrow and ask for another meeting just on my own, if they'll do this, so I can be very specific and honest about some of the things mum is doing. It's nigh on impossible to say anything to anyone when mum is sitting there in front of me as she contradicts everything. Deep breaths as always, lets see what happens.
Thanks again x

 

[Swoozy]

Hello. As we all struggle to get help I thought I would just let you know that I recorded my own mother during her worst times and showed them to the hospital and the social worker and this seemed to help. Unfortunately every time we want help it’s a battle and we must use every tool we can in that fight. Good luck xx

 

[love.dad.but..]

Hello. As we all struggle to get help I thought I would just let you know that I recorded my own mother during her worst times and showed them to the hospital and the social worker and this seemed to help. Unfortunately every time we want help it’s a battle and we must use every tool we can in that fight. Good luck xx

I think that is a really good idea as it seems that although a carer can describe and relate how terrible things have become .... the powers that be have difficulty accepting evidence so if they see or hear as well...can only help

 

[Suzie G]

Thank you, that's a really good idea. I take photos of the mess and hidden piles of pills etc, but recording her might be another option. I'll have to think about how to do it so she doesn't try to stop me though...
Last night, 11pm, way after her bedtime, I got a very angry voicemail. (Didn't answer as was asleep!) She needs money to go the hairdressers, can I give her her money back etc etc. ?.... It came from nowhere!! This is such a bizarre illness.

On that note - advice sought!
3 years ago when the POA was registered with the court I paid the solicitor's fees etc and with one thing and another it came to over £400. I've just claimed a small refund after reading on here that you can do so. I didn't mind paying for it myself at that time as I was working. But I gave up work last August, I have a 100 mile round trip to mum 3 times a week, and I wondered what other people feel about whether it's a valid expense to now 'reclaim' from mum's account? As I no longer work I'm struggling financially. Is that something I can morally/legitimately say should come from her finances, not mine? I'm waiting for my Carer's Allowance claim to come through as I didn't realise I might be entitled to that - I might not even get it - but to be honest, I could really do with the £400.
What do people think?

 

[Beate]

Suzie, POA fees are the donor's responsibility - of course you can reimburse yourself! Especially as that small refund will go to the donor's bank account!

 

[Suzie G]

Yes, it was when I read that the refund would go back into mum's account that I thought - hang on a minute - thank you Beate!

 

[love.dad.but..]

Thank you, that's a really good idea. I take photos of the mess and hidden piles of pills etc, but recording her might be another option. I'll have to think about how to do it so she doesn't try to stop me though...
Last night, 11pm, way after her bedtime, I got a very angry voicemail. (Didn't answer as was asleep!) She needs money to go the hairdressers, can I give her her money back etc etc. ?.... It came from nowhere!! This is such a bizarre illness.

On that note - advice sought!
3 years ago when the POA was registered with the court I paid the solicitor's fees etc and with one thing and another it came to over £400. I've just claimed a small refund after reading on here that you can do so. I didn't mind paying for it myself at that time as I was working. But I gave up work last August, I have a 100 mile round trip to mum 3 times a week, and I wondered what other people feel about whether it's a valid expense to now 'reclaim' from mum's account? As I no longer work I'm struggling financially. Is that something I can morally/legitimately say should come from her finances, not mine? I'm waiting for my Carer's Allowance claim to come through as I didn't realise I might be entitled to that - I might not even get it - but to be honest, I could really do with the £400.
What do people think?

Error..deleted

 

[love.dad.but..]

Thank you, that's a really good idea. I take photos of the mess and hidden piles of pills etc, but recording her might be another option. I'll have to think about how to do it so she doesn't try to stop me though...
Last night, 11pm, way after her bedtime, I got a very angry voicemail. (Didn't answer as was asleep!) She needs money to go the hairdressers, can I give her her money back etc etc. ?.... It came from nowhere!! This is such a bizarre illness.

On that note - advice sought!
3 years ago when the POA was registered with the court I paid the solicitor's fees etc and with one thing and another it came to over £400. I've just claimed a small refund after reading on here that you can do so. I didn't mind paying for it myself at that time as I was working. But I gave up work last August, I have a 100 mile round trip to mum 3 times a week, and I wondered what other people feel about whether it's a valid expense to now 'reclaim' from mum's account? As I no longer work I'm struggling financially. Is that something I can morally/legitimately say should come from her finances, not mine? I'm waiting for my Carer's Allowance claim to come through as I didn't realise I might be entitled to that - I might not even get it - but to be honest, I could really do with the £400.
What do people think?

Yes of course...i dealt with the registration for my dad but it was paid from his account

 

[Orlaworld]

Not sure what services are available in your area but might be worth asking your mum's GP for a referral to the dementia crisis team (if they have one) or equivalent. In my area, a referral can generate a 72 hour assessment where they can stay with the person and see first hand what is going on. This has the dual benefit of creating a decent accurate report and also providing more information to the social workers.

But as others have already said, it might take you stepping back and allowing your mum to struggle, for social services to step in. For example, if you were ill, you could phone up duty SW and report a carer crisis - i.e., a vulnerable person has been left alone, and they would then have a duty of care to investigate and support - which would highlight how much care your mum actually needed.