Social Services - Respite care - funding?

Discussion in 'Middle - later stages of dementia' started by gogo321, Jan 3, 2019.

  1. gogo321

    gogo321 Registered User

    May 18, 2017
    Hi there,
    I am writing this in the hope that someone here may be able to help, advise or compare notes!

    Here is a brief outline of where we are now:

    Back in August we contacted GP and Social Services for help with mum. She was diagnosed with Mixed Dementia about 2.5 years ago and lives alone. In June of this year, her best friend of 50 years passed away and after that we noticed a rapid decline in Mum - mainly to do with depression, which was causing her to not want to eat (she would still prepare her meals but after one bite would push it aside and then throw it away.)

    We asked at the time whether Mum could have a couple of weeks respite care somewhere, just so she could be monitored to see what was going on with her eating, and also if there was anything else going on (as she lives alone so we have no idea what goes on when we are not there!). SS said she did not qualify for respite as her situation was not dire enough. The solution from SS was to increase her dose of Mirtazipine (anti depressant) to 30mg and to put an extra care call in at lunchtime to see if mum had eaten.

    A review was done early December and we were asked whether in increased dose of Mirtazipine had had any effect - we said no, we didn't think it had had any effect, certainly not on her eating or her mood. The dose was then increased to 45mg - the highest.

    Mum came to stay with me over Christmas - and we then experienced a couple of completely "manic" nights. She didn't know where she was, or what she was doing. This mania would start approximately 2 hours after giving her medication.

    The last night she was here, I decided to reduce the dose of Mirtazipine so gave her half a tablet instead. This resulted in a quieter night. She stayed for four nights and then I took her home. I stayed overnight with her that night to make sure she was settled. I stayed for most of the following day (Friday) and went home that evening. Over the weekend, I called her a couple of times - and she sounded quite bright and cheerful on the phone. On Sunday, I did the same and had a little chat with her - all seemed OK. A couple of hours later I received a call from the police, saying mum had called them to report my son (her grandson) missing. She said he was 8 years old and had been playing with his friends outside her window. My son is 16 and has never played outside mum's house and doesn't have any friends there.
    The police attended and suspected a dementia issue - they phoned me and then I went over to see mum (she lives an hour away).
    We called for the out of hours doctor - who confirmed that mum had a urine infection and gave us some antibiotics.

    Of course we were worried - so between my sister and I, we have been with mum ever since Sunday afternoon just to see what goes on. It was a bit of a revelation, as she was up and down during the night, cleaning the basin, wandering about, etc etc.

    The trouble is now that we don't know how much of her behaviour is down to the UTI ... or the increased medication ... or just the progression of her dementia.
    We didn't give her the anti-depressant last night and she had a much better night's sleep - however it was also Day 3 of the antibiotics - so it could be that that helped!

    We are now at a point where the GP says that she doesn't think that the 4 calls a day package is enough for mum and if her medication is changed (the CPN wants to change it to Mermantine) then she feels that mum would need to be monitored closely to see what effects the new drug may have on her.

    The Social Worker says she needs to come out again to assess mum - she has already been a couple of times so not sure what else she needs to come for. Each time she has visited in the past, Mum has become very distressed in the meeting (she feels very vulnerable and overwhelmed with all the questions).d

    My sister and I have both types of PoA and we now wonder how we go about exercising the PoA with regards to the SS? I have already said to the SW not to come to tomorrow's meeting as it will be too distressing for mum. But I'm not sure if the PoA would give us the power to do this?

    Any advice would be much appreciated!
  2. witts1973

    witts1973 Registered User

    Jun 20, 2018
    Leamington Spa
    Hi did the Social worker accept that you didn't want her to appear for the meeting and confirm that she won't be coming?
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    Hi @gogo321

    When my dad was assessed by the social worker he was only asked a few questions directly. Mostly I told her what had been happening while dad sat in another room watching Telly.
    Could something like this be arranged for your mum?
    Dad was unable to tell them anything useful at this stage as he thought he was fine.
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    I'm not sure how that would work, you want respite but don't want the SS to do a new assessment? So they use what in the way of information about the current situation, the last time they saw her, what you tell them?
    It's all academic as if social services do see her and decide that she's at risk then you might as well use the LPA to light the fire with as they can take over and section her.
    A POA/LPA or whatever isn't worth the paper it's written on if the state decides that her best interests are different to the holder of the POA, they act in the best interests of the individual and the more you "exercise your rights" you'll find out the state has a lot more muscle if it comes down to her safety and welfare.
    Messing about with her medications won't go down too well even if it worked as the "professionals" tend not to like it and it could count against you if you say that's what you're doing.
    I'm not saying what you're doing is wrong but the "authorities" may perceive it that way, denying SS access to her, messing with her medications for a good nights is open to misinterpretation and then the POA/LPA isn't worth the paper it's printed on.
  5. witts1973

    witts1973 Registered User

    Jun 20, 2018
    Leamington Spa
    I wouldn't surprise me if the social worker does turn up tomorrow even though you have asked her not to,so if you don't live too far away and you want to be part of the process I would be there for the meeting
  6. kindred

    kindred Registered User

    Apr 8, 2018
    Yes, and it's time for a best interests statement, I think. This is not sustainable. Please remember SS will want us to go on caring at home long past the time when it is threatening our health. It is accident management now, so my GP tells me. That is what happened in our case. Warmest, Gx
  7. Jessbow

    Jessbow Registered User

    Absolutely nothing stops you booking mum in for respite if you /she can fund it.

    How can SS assess her needs if you dont want them to attend and do an assessment?
  8. gogo321

    gogo321 Registered User

    May 18, 2017
    Hi there,

    Thank you for the replies. I must admit that I had a very tired head when I composed the thread last night and may have missed out a couple of details that people have picked up on! For that I must apologise! Let me just try and fill in some of my gaps!

    Firstly, the night we halved the dose of medication, it was done with the blessing of the GP who then arranged the following day for a new prescription to be issued for the reduced dose. Sorry, when I re-read my post this morning I can see I left that bit out as it was all tumbling out of my head.

    The GP has also had a direct conversation with the SW with regards to mum's current condition and has told the SW that the current care package of carer calls during the day is not sufficient to meet mum's needs and keep her safe - i.e. between calls and especially at night. Also if the medication is likely to be changed to something different, then mum would need close monitoring to see the effects of the new medication (day and night).

    We already had a meeting booked for today with the Community Psychiatric Nurse who is coming to discuss the change of medication. The SW called me yesterday afternoon to see if she could come along too. As mum has had such a distressing week, we felt it better for mum to just see the CPN only - as once multiple people arrive at mum's house it all feels a little threatening and overwhelming for her. She is better just having one person at a time to visit and ask questions - she feels more relaxed and able to talk openly about how she feels. Hopefully the CPN will be able to advise us better with regards to the medication and potential changes.

    I can also see by re-reading my text that it looks as though we are blocking the SW access to mum - which is also not the case. We are more than happy for the SW to come out again and assess mum's needs, however what she won't be able to assess is mum's recent behaviour at night and how upset and distressed she can get sometimes. Although we have now had a couple of calmer nights, we are not sure what will happen if the medication is changed to something different and that is a worry for all of us.

    Mum is very aware of her condition and it frustrates her greatly. She was not aware of being up in the night and so this is a new revelation to her too! The GP's suspicion is that this may have been happening for a while (although we would never have known as mum had no idea she was doing it!). Looking back in the Carer's notes, there are some entries in the morning call notes that say mum looked very tired, or said she was tired - perhaps we now know why!

    We would love to be able to fund the short-term respite ourselves but we just don't have the money. We have even talked about maybe taking out a loan to try and fund it ourselves, but really would like to explore what social services might be able to offer us first.

    So now i have written all that - I am no longer sure what question I am asking you all for help with!! I am sorry ... I feel slightly befuddled!

    Has anyone out there had short-term respite stay funded by the LA - or is it just not done?
  9. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    There is such a thing as Direct Payments which can be authorised by Social Services, for you to spend as you see fit within the confines of the Care Plan for Mum.
    We had this to initially fund short term respite, but then my OH refused to go any more, so a new Care Plan was done and we still get payments, which we now use to fund being able to go out and about together by paying a Private Assistant. We live in a remote village with no transport now OH has lost driving license and I have given up driving due to sight problems.
    What SS really do not help very much with is actually finding the respite place ment - you have to do that yourself, and it is not always easy - depending on where you live.....
  10. Louise7

    Louise7 Registered User

    Mar 25, 2016
    #10 Louise7, Jan 4, 2019
    Last edited: Jan 4, 2019
    Social services can offer short term care home placements if necessary. Approx 18 months ago Mum became very agitated and wouldn't sleep at night - constantly paced about - placing her at risk of harm. Medication tried by the GP didn't help to reduce the agitation so a referral was made to the CPN team. Social services subsequently found a temporary 6 week placement during which time various changes of medication took place. At the end of the 6 week period as there had been very little change in behaviour the placement was made permanent. If you have the support of the GP and CPN who can both confirm that your Mum is not safe to be left on her own and needs 24hr care then social services have a duty of care to find a placement. Choices may be limited though. We were lucky and the residential home was close by and staff were caring. It can be 'pot luck' but at least your Mum will be safer than being at home.

    Edit: Mum was not self funding at the time and social services found the home placement, not the family, as it was deemed an 'emergency placement'.
  11. gogo321

    gogo321 Registered User

    May 18, 2017
    Thanks Louise - we keep being told that mum's situation is not dire enough to meet the criteria for needing respite, even though the GP has said that any medication changes would need to be closely monitored and has stated that the four carer calls a day offered by SS are not sufficient to keep mum safe in her current condition.
    The CPN visited today and we are going to give Memantine a try.... but still haven't addressed the issue of how to monitor/observe mum once she starts taking it. A home placement would be the most sensible solution - however it appears to be almost impossible to get!
    We will keep trying though!
  12. Kat loves milk tray

    Kat loves milk tray Registered User

    Jan 1, 2019
    My mum contacted ss for an emergency assessment for my Dad to go into residential care for two reasons, the first being they needed to move out to have some repairs carried out in their home and the second reason, my mum was absolutely exhausted looking after my Dad and was at risk from his aggression.
    Social services response was very disappointing. They gave my mum a list of residential homes to contact, no assessment.
    In our case Dad is self funding so has to pay. We did as a family manage to organise a residential placement for Dad and he is still in care.
    I was so unhappy with the lack of support from ss and also we were misinformed about a few things such as costs if they commission the care. They are supposed to be the professionals and should be giving the correct information.
    Hope you are able to secure a placement however be prepared to fight for this.
  13. marionq

    marionq Registered User

    Apr 24, 2013
    A lot depends on postcode. In the Glasgow area the LA will give support for two weeks and after that you have to fund respite totally if you can find it. A short distance away in Stirling they will support 4 weeks. It depends on each local authority. With support the respite is about £136 per week and without it for the care home my husband goes to - when I can get a vacancy - £1050 per week.

    Regular respite would I think keep a lot of people out of permanent care.

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