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Reducing care package? - Carers UK Forum

Reducing care package?

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I wonder if some of you good people on this forum could give me a bit of a steer on this.

Background - mum experienced some kind of sudden onset dementia last October and we had three horrendous months of hospital admissions and discharges and mum experiencing paranoia and displaying some very challenging behaviours. Four and a half months on, and with a successful (so far) medication regime, we have a carer who comes in three times a week for 3-5 hours a day to sit with mum/feed/toilet her so that I get a break or can go out. I can also have four weeks' respite a year and will be going away for a week in April for a holiday. So far so good. It's not all plain sailing of course, but so far I'm coping and still wondering 'what next'. At the moment I still can't bear the thought of putting her in a home (not yet, anyway).

The carer has been on holiday this week and as I didn't want a new face (we have the same carer every time) I decided to have no one at all. Things have been OK this week. Maybe I have just been lucky. Mum has been very calm (and I wonder if the non appearance of the carer this week actually has something to do with that!) and earlier in the week I went out for an hour for a walk and left her alone and then popped out to the supermarket later in the day and she was fine both times to be left alone. I know she's not 'getting better' as such, but she has certainly had a 'good week'. Most of mum's care package is funded by the LA (via a direct payment) and equates to roughly 15 hours a week with my agency of choice.

I am very, very grateful for the care package that has been allocated for my mum, but if I feel that 15 hours a week is actually too much at any point, would it be wise of me to tell the social worker to reduce it to fewer hours a week? It that barmy? Would I then be able to get it back again if required? I guess they wouldn't be keen and it would involve a re-assessment and further justification.

I suppose the sensible thing to do is keep things as they are as Dementia is only going to get worse at some stage, but I wonder if anyone else has been in this position and has any advice? Thanks.
If you are using direct payments, I don't think there is any reason why you can't
1. Reduce the hours yourself and pay back any unused money. (Keep records). This depends on your relationship with the care company. They might not be able to 'up' the hours again if you should change your mind.
2. Change the days so that either you have less time on more days, or put them all into one day for example. Again with direct payments you can choose things like attendance times and even the company but Care Companies have to juggle their staff and schedules so won't be too happy with frequent requests for change.
3. You don't actually have to go out. You could use some of the time the carer is with Mum to do that wardrobe sort out you've been putting off, paint the fence, clear the shed, have a long hot soak in the bath etc. That way you will be 'around' which might please Mum but not having to watch her every minute.
Whatever, I personally think it would be a mistake to involve Social Services in a 'reduction' as the very next week you may want an increase. Hang on to what you've got but make it work a bit better for you. With direct payments you have to show that the money is being used to pay for Mum's care but it doesn't have to be according to the recommended times. For example SS have allocated my Mum a half hour at lunch and a half hour at tea time. There's nothing stopping me saying to the Care Company I want an hour at lunch time and sort out tea myself. What I couldn't do is then ask SS for an extra half hour for tea time because they are already covering that.
Hope that makes sense.
Don't stop them, whatever you do!! I've been told that because of the new care act, carers living with the caree can now be paid Direct Payments. I'm currently following this up, for my own situation. Will report back to the forum in due course.
Hi Maz, I agree with Bowlingbun, whatever you do, do not ask sOcial Services for a reduction. You will never get it back again. mAybe save up the hours and use it as a day's respite? As a carer, you are doing a marathon, not a sprint and you need to pace yourself
I suppose the sensible thing to do is keep things as they are as Dementia is only going to get worse at some stage ...
Spot on!

Hi Maz, I agree with BB, don't cut the hours, you may well struggle to get them back at a later date.

Another perspective is that you had the energy to cope without care worker visits for a week because you and your mum have regular support ....

As Elaine says, you could jiggle your Mum's care hours. You are lucky though that she has consistency of care and not different ones turning up each time.

Thanks for the replies. I had actually been planning for a while to 'bank' some hours and use the time for a full day's cover so that I can have a longer break now and again (especially as day care at the care home has so far not been well received!).

Melly - that's a very good way of looking at things - a week with no care visits at all has been eased by the support received so far!

Bowlingbun - do you mean there are plans afoot for carers living with their caree to pay the direct payment to themselves for the care given? Surely not?!
Please don't reduce your care package. Chances are you wouldn't get it back again if you need it in the future.
My mother in law lives with me and my husband. Ive just given up a full time job to care for her as we couldnt find anyone suitable do do the now needed, double up calls with her current PA. I now get paid from our direct payments account because of the exceptional circumstances. This was authorised by SS when they realised that the only other alternative would for her to go into a home. They jumped at the chance of saving themselves some money.
I dont know whats happened here? ?? My name is michelle, not sally. I seem to be logged in on someone elses account. I joined the forum to post in this thread and it appears me and sally have got the same login :o
Don't worry, I've asked the moderators to sort this out for you.
Michelle (alias Sally!) - that's very interesting. I wonder if I could apply for the 'exceptional circumstances'. I need a carer who speaks my mother's language. I currently have one who speaks mum's second language (sadly mum's English is her third language!) , but when she goes on holiday there is no replacement (have not been able to find one yet). I wonder what I would need to do/say to achieve the 'exceptional circumstances' position. I guess I could play the language card. I'm not trying to be dishonest in any way, but what difference does it make to SS whether their direct payments money goes to a private agency or to me (it would certainly make a big difference to me! - my current caring situation re my mother is not driven by cash, but I have committed 'financial suicide', as I sometimes see it referred to, in order to care for mum full time.