Social Services and Love Lies

[Jo Sutton]

Hi everyone. I need your help with a sticky problem.

Social Services offered me a choice of respite - either someone to come and 'sit' with Mum in her own home for a few hours a week, or a few weeks of care in a nursing home per year. I want the latter, as I haven't have a break for two and a half years and I just want some time off to sleep when I want to - you all know what it's like.

When I told SS this, they looked at me askance, and told me to 'discuss' it with Mum and give them a call in a couple of weeks. Yeah, right. Mum will say she is fine to be left on her own, and we should just go away for a holiday and leave her. So I didn't say anything and left it a couple of weeks.

I have just spoken to them again, and they refuse to arrange respite without Mum's agreement. I explained that she won't remember. I explained that the only way I will get her into respite is to tell her it's doctor's orders, but still they insisted that they can't do anything without Mum's agreement.

The lady I spoke to was sympathetic - she met Mum when she came to do the initial assessment, and gave up asking her questions half way through when Mum went on a diatribe about how my father (who died in 2003) has just left her for the 'woman in the next road'. She said she would do her best to phrase it in such a way that will persuade Mum it's a good idea, but that she's not allowed to 'lie' to her.

Has anyone else encountered this from Social Services, or is it just our Local Authority? And does anyone have any suggestions as to how to deal with it. I don't worry beyond the actual visit, as Mum won't remember and once it's agreed I can tell her anything that will get her there. I'm just worried that, on the day, Mum won't agree and bang goes any chance of respite.

I desperately need some time off, and I'm worried that my only chance will slip through my fingers. Mum is fully funded and there is no way we could afford private respite.

Thanks so much for reading!

Hugs

Jo xx

 

[nae sporran]

Sorry Jo, I read your post earlier and can't really come up with an answer. My OH reluctantly accepted a day centre in April and has now gone off the idea. She does have a sitter who takes her to singing for the brain or stays in the house depending on her energy levels and mood. I know it's not what you want or what you really need, but could you be there when Social Services call to gently persuade your mum to accept the sitter service as a starting point to give you some respite. Does she live with you or on her own? You may find it easier to persuade her to accept respite care if she accepts the sitter and you may even have an ally who knows and understands her.
Probably not much help, I know how hard it is to get and keep respite, but couldn't go without trying something. Best of luck.

 

[Pacucho]

Hello Jo,

From your message it looks like your SS department are putting up a "hurdle" to prevent them from dealing with your situation. A suggestion I have is if you have a good Carers Centre where you live they can actually be very good in acting on your behalf, and they will be able to challenge the response you received. You can find your nearest Carers Centre at the following link: https://carers.org/section/help-advicehttps://carers.org/section/help-advice.
Hope this helps,

Paco

 

[Prudence9]

Jo I don't know if this is even possible but could you ask SS for a direct payment/Carers grant so that you would be able to organise your own form of respite?

If you were organising it yourself you would be able to maybe place your Mum in to respite care without involving the SW demanding your Mum's consent? (Not sure if that would seem a little underhand to you?).

Contacting your Carers Centre is such a good idea as they would be able to help you with this and advise on any other options. My Centre are wonderful advocates.

 

[Kevinl]

I doubt very much that a social worker will do anything against your mother's wishes, the 2014 Care Act makes it plain that their wishes should be paramount although they do have to consider the carers situation too.
Here's a quote from the Guidance Notes to the Act;
"The importance of beginning with the assumption that the individual is best-placed to judge the individual’s wellbeing. Building on the principles of the Mental Capacity Act, the local authority should assume that the person themselves knows best their own outcomes, goals and wellbeing."
It carries on like that but the basic principal is that they come first.
The other issue would be getting a home that will take someone who was unwilling to be there.
They probably wouldn't be able to get a DoLS in time and they may fear the person could become disruptive or aggressive if they were there against their will so they may well not want to know.
Sorry that doesn't help and I'm sympathetic about your situation but that is what you're up against.
K

 

[Shedrech]

hi Jo Sutton
is it you asking your mum, or does the SW want to ask her
I'm wondering if there is a wording that will have your mum answering yes
eg we both would enjoy a break, wouldn't we, mum, and the doctor would be happy that you were relaxing and taking some time to be looked after, so it's a good idea to have a bit of respite isn't it ....
nothing in that is an out and out lie, just bends the truth a trifle

 

[marionq]

John's psychiatrist wrote a letter to Social Work to say he did not have the capacity to decide where he lived. This allowed me to have two weeks respite. At the end of it he seemed fine and never mentioned it again.

 

[Jo Sutton]

Thanks so much everyone for your help and suggestions. I will certainly contact our local Carers centre, as they probably have experience of our Local Authority and their quirks.

Our situation is that I live with Mum in her house, and the Social Worker basically wants to come round and have a face-to-face with Mum to get her agreement before she authorises the respite package. I can be there, and she has said she will be as delicate as possible, bend the truth where she can, but she can't 'lie'.

I'm kicking myself as I should have just lied to her and said I had talked to Mum and she was fine with it.

The bizarre thing is that this is part of MY care package as a carer, not Mum's. Maybe they are worried that they will give us the funds and then Mum won't go, although @Shedrech's idea is great and I will take that tack with Mum when it comes to talking to her about it. I'll also see if the Carers Centre have any tips and I might try the Alzheimers Society helpline as well, see if they have any thoughts.

I'm also seeing Mum's GP for my own condition on Wednesday, so I might ask her if it's ok for me to tell Mum that she thinks the respite is a good idea. Then I won't be 'lying'

I'll keep you all posted on how this goes. Hopefully someone else can learn from my mistakes / tribulations in the future.

Hugs

Jo xx

 

[Jo Sutton]

@Pacucho and @Prudence9 - thank you so much for suggesting the Carers Centre. I spoke to them today and they were absolutely brilliant! I don't know why I haven't contacted them before, and I would encourage anyone who hasn't to do so.

They're in partnership with Admiral Nurses, and they said they would contact them and see if they could arrange for a Nurse to be here when SS come round, to smooth things over. They also suggested I ask the Memory Nurse to back me up in person or by letter - similar to your suggestion @marionq.

They are also calling me back tomorrow to talk to me in detail about our situation, to see if there's anything else they can help with

The Alzheimers Society support line were sympathetic, and helped me to understand why SS have to do this - they basically said the same as @Kevinl - but couldn't really suggest anything to help.

But I have a week to think up a 'story' to give Mum that she will accept, but that isn't a lie, and I'm going to follow @Shedrech's line of thinking, which is a really good start point.

Thank you again, everyone, for your help. I feel much more positive now, and I am going to get this respite, by hook or by crook! I'll let you all know how it goes after SS have been, next Thursday.

Hugs

Jo xx

 

[Prudence9]

Oh Jo, what could be better - several brains at once coming together towards a good (hopefully!), solution.
So glad you now have support and you feel more positive, it would be great to know how you get on, good luck xx

 

[Jo Sutton]

I'll say again that the Carers Centre have been absolutely fantastic!

They called me back yesterday and said the following:

1. They have spoken to Admiral Nurses, and one of them knows the Social Worker very well, and is going to have a word before the meeting and give her some tips on how to approach someone with dementia to get the best result.

2. They reassured me that, if Mum won't give consent, I won't lose the respite package. If that happens then SS will go to the next stage, which will probably involve assessing Mum's capacity to make that decision in the first place. That was a huge relief!

3. They arranged an appointment to get me fast-tracked with Admiral Nurses, as there is currently a 2-3 month waiting list in our area.

4. They arranged an appointment with the CAB to go through benefits, and especially talk about me losing my disability benefits and how to appeal.

5. They have offered me one-on-one support themselves when going to appeal.

Still refining how I phrase the respite package to Mum, but I feel so much more positive. It's amazing what a bit of support will do, both real, from the Carers Centre, and virtual, from all of you lovely people on here.

Thank you all so much!

Hugs

Jo xx

 

[nae sporran]

Good news Jo.

 

[Prudence9]

Really pleased for you Jo, thank goodness you're being supported and many thanks for the update.
If you have time it would be great to know if you're finally able to get the respite you need and deserve

 

[Jo Sutton]

@nae sporran and @Prudence9 thank you both so much. I'll let you know how it goes!

Hugs

Jo xx

 

[Jo Sutton]

SS have just left after the visit and it went quite well.

I saw Mum's GP yesterday and she gave me permission to use her name to encourage Mum to do things whenever I needed to. So I told Mum yesterday that the doctor wants her to go into a little private hospital for a week or so, just to monitor all the meds she is on and make sure they are doing their best for her. She didn't have any problem with that.

However, when we got to the SS visit today, Mum was in bed and feeling very sorry for herself. I warned her before SS arrived, but she had forgotten our previous conversation completely. She then started panicking that 'they' were going to take her into hospital right then and there, and that she would never come out again.

By the time SS arrived, she wasn't making much sense, and I had to reassure her time and time again that no one was taking her away, and that she wouldn't be going for several weeks / months, and that it was just for a week or so.

SS didn't spend long with her ... she actually spent more time talking about her cats than about Mum ... and said she was going to recommend the respite and, while she couldn't promise I would get it, she didn't see that it would be a problem.

I'll deal with actually getting Mum there once it's all been arranged.

Thank you so much everyone for your help with this. The thought of a week off sometime early next year has made me very happy, and today is a good day

Hugs

Jo

 

[Amy in the US]

That's great to hear that they were reasonable, and hope you do get that respite, Jo.

 

[nae sporran]

Pleased to hear you got a supportive social worker Jo, there's plenty of devious people on here who can advise on getting your mum to respite in the new year.

 

[Prudence9]

We need a jumping up and down smiley !
Great news Jo, fingers crossed for the respite to come through now, you deserve it, especially after the hard work you've done for it.

Lots of love to you xxx

 

[Jo Sutton]

@Amy in the US @nae sporran and @Prudence9 Thank you all so much! If it hadn't been for you folks, I'd have gone under sometime in the last couple of weeks. Your wonderful support, and this amazing forum, keeps me going.

You're right @Prudence9, we need a jumping up and down smiley, and a big huggy smiley too. I'd use the latter all the time! C'mon moderators. What do you think?

Hugs

Jo xx

 

[Amy in the US]

Jo, no worries, we all help each other. I can't tell you how what a huge support TP has been for me and I'm sure others feel the same. I'm just thrilled you had a positive interaction (definitely seems to not always be the norm, more's the pity) and to hear you sounding more upbeat.