Is there a respite 'allowance'?

[24fan]

I looked after my father for over six months without any daycare provision and thus no breaks, no time off whatsoever - thank you Social Services! - which was, as you can imagine, exhausting. We now have daycare for him for two days a week but I think we would all benefit from some time away somewhere, hopefully this summer. I would think, at the stage he is now, it would probably be the last time this would be workable.

My plan was that we would go somewhere like Eastbourne, or the I-O-W and my father would go into a nursing home but just to sleep, with my mother and I staying in a hotel nearby but collecting him every morning, us all spending the day together as a family, and then taking him back in the evening so that someone else is dealing with his waking during the night and the bed-wetting and the laundry and I could get some much needed sleep and a break, but from the day-to-day routine, not from him.

I don't know what we are 'entitled' to as carers so I don't know what allowance, if there is such a thing, we can ask for. The Care Manager seems to have "no" as her default setting so I need to know what is considered a normal amount of respite per year for a carer before I ask her anything as she will just say no if she thinks she can get away with it.

Does anyone have any idea what is the norm, or what the 'allowance' is?

Thank you in advance.

[PamD]

I think it varies by local authority, and then by discretion within that. Here in Lancashire I get 28 vouchers/year, each of which is for 1 night in residential care (paying small topup) or 4 hours of daycare, and it's a non-means-tested service for me as Mother's carer, in the circumstances that I'm living away from my own home to care for her in her's. I think it varies even within Lancs, don't know the min and max or what criteria they use!

[Margaret W]

I hope someone else will come on here quickly and tell me I am wrong, but I don't really think you are entitled to anything at all. Unless your dad or his carers are assessed as needing respite there will be nothing. After all, it is for your convenience, heaven forbid!

I hope I am wrong.

Love

Margaret

[roxane]

Hi,
There is never any money in the pot when you ask for it.
we had a crisis in November 2011, I phoned the social worker asking for respite. Her answer was " I dont know, our husband is very young, I cant think of anywhere suitable for him " and " have you got someone who can come to stay for a week? "
" he is due a review in November ". I said it is November now can you come to see us?
Her answer was " well if he is this unwell it wouldnt be a fair assessment ". I gave up ended up with taking two weeks annual leave to recover and then had five weeks off sick on the NHS early this year.
Interesting the new financial year starts on Sunday - our GP asked Social worker to offer us respite care three weeks ago - I had a call from the social worker within a week, she was unable to fit in a visit for another two weeks but has planned to visit today.
Sadly this Social Worker works in the Office responsible for a lady with Dementia who sadly died a year ago because her dear caring husband felt she would have a better life in heaven and he helped her get there. Why dont they progress forward. Our Prime minister keeps going on about learning from our mistake - whos mistake - we learn at school as children - adults should foresee potential risk and avoid them and not learn from mistakes.
I think your best way forward is make the most of the new financial year, ask for your Dads GP to request respite care for your Mum.
I do agree with you everyone should be entitled to whatever is set as a fixed number of hours/weeks respite to just survive every day and on top of that something for the crisis/emergency.
Best wishes to you and your family
Lis

[littlegem]

Hi,
No good news I'm afraid. I have been trying for months now to get money for respite for myself, the answer is alwys the same- try the charities for a break.
Have been in touch with my local MP, the Welsh Assembly who are responsible for the laws here, everyone I can think of.
David (I understand the disabled) Cameron has told SW to think outside the box when giving help to people, he's called it personalisation but seems the message is not getting through.
My problem is I want hubby and I to go away together in a hotel. They do not seem to realise that having a break from doing everything in the house with driving/finances etc etc WOULD BE a break for me. It's doing everything that is getting me down taking into consideration my arthritis that makes doing things painful anyway.
They will wait till I drop and then move I suppose. After 5 years with no break (except when I had my hip replaced!!!!!!! 3 days in hospital) I don't suppose it will be long before I do drop.
Useless bunch SS. Tick all the boxes and disappear.
I hope you do manage to get something organised.
take care.x

[father ted]

As someone else said you won't get respite till your relative has had a community care assessment from social services and there is often a wait for this. I suggest you request your GP to write a supporting letter to say how everyone would benefit and send this off to a named person at social services. Budgets for respite and the amount vary in each local authority but a social worker should be able to advise you of trusts or charities that may be able to assist financially.

[Riaujonc]

My Mums care at home is council funded and when she had her care assessment
the finance officer factored in extra money each month which we let build up until we need it.It really does depend on where you live.The whole system is very unfair.

[happisoo]

After a care assessment from social worker we have had some free care each week which has been noted as "for the patient". They also told me about "for the carer", i.e. respite. You have to fight a bit but Gwynedd council seem pretty good here. I have also just been informed of 'direct payments' to us so that we can organise mum's care ourselves, rather than the SS. (Mum lives with me and husband and has no savings etc.) I have no idea if this is the same for other councils - I suspect there is a huge discrepancy about who is a caring council and who is not. Good luck and feel free to vent any pent up frustrate here! :-))

[Juddy]

Earlier this year I wanted to arrange some respite care for my Mum. I rang the c/homes that I thought would care for someone with dementia but the only one in our area who did, said they didn't take people for respite. As a last resort I contacted The S.S. The respite was needed quite quickly because Mum's sheltered flat was going to have its bathroom and kitchen ripped out and replaced and we didn't know the exact date when that would happen. The person on the phone rang me back to tell me that a Council run Care Home would take Mum for the week as her dementia wasn't too bad but Mum would have to be assessed by a Social Worker. When the Social Worker came and assessed Mum she declared that she couldn't see any reason why Mum should need respite and she was sure Mum would cope with the upheaval. I broke down in tears and told her to get out as the S.S had never been of any help throughout my late Dad's illness and my Mum's current welfare. I knew that Mum would not manage through out the mess that would happen during the refurnishment. For instance how would she manage without a toilet. I would have had her to live with me but she wouldn't be able to manage the stairs and would be wandering around all night.

The Social Worker relented and booked Mum into the Council Home although she wanted to send her to a place about 15miles away and it was only through my determination that the local home was eventually booked for her.

The fact is Mum had to pay in full for the Respite Care it wasn't being given to her for nothing. I am so glad that she did go to Respite Care because her flat was in a right mess and took me a couple of days to get it back to normal for her return. She was well looked after at the home and I feel quite sad this home doesn't usually take dementia sufferers as she did enjoy her stay there. I also had a well earned rest although I still felt guilty about her being there.

I really could do with another one but it is so difficult to arrange and I haven't got a good enough excuse!!!!!!

[Isabella41]

I agree with everyone on here that respite seems to be a lottery and where you live can determine what you can get. I have found from my own bitter personal experience that being very firm and repeating over and over how much you are struggling to cope does get results. For weeks I had been told there was no additional help available and then I rang the social worker,told her my health was worse and that I was being admitted to hospital. A respite bed was arranged within a day. That was 3 wks ago. I'm still off work on sick leave and mum is still in respite. Its amazing what they can do when pushed to.

[24fan]

Thank you all for your replies.

My concern is, as always, that too much emphasis on us not being able to cope might result in Social Services making one of their famous 'best interests' decisions and that might be to take him into a home full-time. We would probably get continuing care as his behaviour is dreadful when he is elsewhere; violent and aggressive but we are always running scared of their power to just take over. When he was in hopsital recently and I had to talk to the hospital social worker who had met Daddy once for all of five minutes, and when I said he simply needs to come home, she started talking about best interest decisions and continuing care so I knew where that was going and got him out of there before the silly creature could make any more ill-informed ridiculous decisions about him but it always feels like the same situation; the people making all the fuss get what they need as S.S. want them to shut up and go away and the quiet ones get nothing but at least we would be 'safe' if they weren't thinking we couldn't cope.

I am loathe to admit that we need help even though I would admit here that we do, and as littlegem said, the break from the day-to-day routine would be a break in itself, just to have a few days with someone else changing his bed and doing all the laundry would be wonderful, let alone an unbroken night's sleep or two - let someone else have the pager for the pressure mattress and see how they like it!

I know both mine and mother's G.P. would be sympathetic to our needs so maybe I'll try and approach S.S. from that angle rather than stating categorically that we can't cope.

Another thought - maybe S.S. factor in breaks into the direct payments monies as we seem to have far too much, so maybe some of that is for respite, I'll have to get them to clarify exactly what it is for just in case there is some for that, as it is respite for him too.

[ggma]

You mention Direct Payments, I do know of carers and disabled people who are receiving Direct Payments instead of care organised by care manager/social worker. They are able to use this to buy help wherever they are, i.e. to use an agency worker whilst on holiday. My understanding is that you can use your direct payments as you wish to manage the care of your father, but that you would only get an increase if the level of need increased, so that would mean a review or reassessment to establish the changing need in care.

[Izzy]

I use the Direct Payment scheme for my husband. We get a payment based on a Social Work assessment and he contributes a monthly sum. I employ two carer's who share the shifts. I can use the payment in any way I want. I haven't used it for respite but as far as I know I can do this. This is the link to the government site:
http://www.direct.gov.uk/en/MoneyTax...le/DG_10018721