Direct payments and recruitment

[Toddleo]

Hello all, my first post, and what a wonderful life line this forum appears to be.

Mum has middle stage dementia, which, surprisingly has only been diagnosed recently following a 12 week hospital stay, where she has been well looked after. She is also registered blind.

The time has come for her discharge, and after very narrowly failing to secure continuing health care funding (it will be reviewed in three months apparently), we have to decide how to proceed. We are edging towards care at home ourself ( myself and my brother) with supplementary help through either an agency (very expensive - but I expect worth the cost) or young adult grandchildren who would deserve payment for their time.

We will receive direct payments apparently, and have selected this route as it would give us more flexiblility with timings of care visits etc.

However, mum's savings are well below the threshold, and the money paid to her as direct payments will only cover approximately four hours of care a day. Mum needs 24 hour care. My brother lives with mum (getting carers allowance) and will have to do the night shift (she is a very poor and restless sleeper) I work three days a week for a charity, which I love, but will reluctantly leave my job to do the day shifts (in an ideal world I would love to carry on working at least one day per week), and to be honest, I am worried about the prospect of doing 12 hour shifts - especially as I am married with a family, and the obvious impact on my weekend and family time. I was hoping that we could "buy" at least one day a week in a dementia club, but the fund will just not stretch to that, if we need to spend it on other care.

With this in mind, I want to make the direct payments fund stretch as far as possible!, which would mean not going through a care agency (regrettably) and recruiting some of the young adult grandchildren (one is a nurse, the other a caring young lady, who is sadly not very local, and has no transport!) They do not live at the same address as mum, so I gather that it is an option, but to be honest I am very daunted at the prospect of having to "recruit them" with all that entails (tax, NI, Insurance, pension enrolement, contracts ) etc

Your valuable advice please, have any of you received assistance in this regard? who can help me with all of this employment malarkey? Is there a charity or similar who can take the admin off my hands?

Sorry for the long post, I am somewhat drained! Any comments appreciated, and by the way, we are in south Herts.

Kind regards to all of you, I know that this forum will be so helpful!

 

[stanleypj]

Welcome to TP Toddleo. I am sorry to hear about your problems but you have come to a very good place for support.

Sorry to hear that CHC was not awarded and hoping the three month review will put this right. You may find this link useful in that regard:

http://forum.alzheimers.org.uk/showthread.php?86059-CHC-(Continuing-Healthcare)-support-thread

Your plan for coping looks possible though it will put a tremendous burden on you and the other family members. My understanding is that you are correct in thinking that relatives who do not live at the same address can be paid from direct funding.

I don't know where you live but our local council provide a brokerage service to link people with private carers. Not only that, but they arrange for all the financial side to be dealt with by an accountancy firm. The annual cost is surprisingly reasonable. I know about this because, prior to my wife getting CHC, we had this help from the LA and it made life a lot more manageable. The help is available to anyone, including self-funders. I don't know how many other LAs do this - probably not many - but it's worth enquiring if you haven't done so already.

I wouldn't worry too much about not being able to fund agency carers. Finding a really reliable agency is not easy, as you may already know.

I'm sure you will get more suggestions.

 

[Toddleo]

Thank you Stanleypj - I was irrationally excited to get my first reply - it just shows you how sad my life has become

I have not heard about the brokerage thing, it sounds very interesting, I will have a google and see if such a thing exists in the Hertfordshire County Council area..

Many thanks to you

 

[Beate]

Just call Adult Social Services and ask about it.

 

[Catherine.]

Day care may help?

Hello all, my first post, and what a wonderful life line this forum appears to be.

Mum has middle stage dementia, which, surprisingly has only been diagnosed recently following a 12 week hospital stay, where she has been well looked after. She is also registered blind.

The time has come for her discharge, and after very narrowly failing to secure continuing health care funding (it will be reviewed in three months apparently), we have to decide how to proceed. We are edging towards care at home ourself ( myself and my brother) with supplementary help through either an agency (very expensive - but I expect worth the cost) or young adult grandchildren who would deserve payment for their time.

We will receive direct payments apparently, and have selected this route as it would give us more flexiblility with timings of care visits etc.

However, mum's savings are well below the threshold, and the money paid to her as direct payments will only cover approximately four hours of care a day. Mum needs 24 hour care. My brother lives with mum (getting carers allowance) and will have to do the night shift (she is a very poor and restless sleeper) I work three days a week for a charity, which I love, but will reluctantly leave my job to do the day shifts (in an ideal world I would love to carry on working at least one day per week), and to be honest, I am worried about the prospect of doing 12 hour shifts - especially as I am married with a family, and the obvious impact on my weekend and family time. I was hoping that we could "buy" at least one day a week in a dementia club, but the fund will just not stretch to that, if we need to spend it on other care.

With this in mind, I want to make the direct payments fund stretch as far as possible!, which would mean not going through a care agency (regrettably) and recruiting some of the young adult grandchildren (one is a nurse, the other a caring young lady, who is sadly not very local, and has no transport!) They do not live at the same address as mum, so I gather that it is an option, but to be honest I am very daunted at the prospect of having to "recruit them" with all that entails (tax, NI, Insurance, pension enrolement, contracts ) etc

Your valuable advice please, have any of you received assistance in this regard? who can help me with all of this employment malarkey? Is there a charity or similar who can take the admin off my hands?

Sorry for the long post, I am somewhat drained! Any comments appreciated, and by the way, we are in south Herts.

Kind regards to all of you, I know that this forum will be so helpful!

Hi there
My dad was diagnosed earlier this year with mixed dementia. He and my mum live over the road from us so I help with his care as much as I can around my job.
He goes to day centres 3 times a week run by Age UK. We also are direct funded, which helps with payments for them. We also are entitled to sitters from Age UK for up to 3 hours a week, 2 to 3 times a month. We could have longer but would have to pay. He has been away for a weeks respite which was partly paid for by the council. Would any of these things help you? And are you getting attendance allowance, a none means tested payment.

 

[Toddleo]

Hi there
My dad was diagnosed earlier this year with mixed dementia. He and my mum live over the road from us so I help with his care as much as I can around my job.
He goes to day centres 3 times a week run by Age UK. We also are direct funded, which helps with payments for them. We also are entitled to sitters from Age UK for up to 3 hours a week, 2 to 3 times a month. We could have longer but would have to pay. He has been away for a weeks respite which was partly paid for by the council. Would any of these things help you? And are you getting attendance allowance, a none means tested payment.

Hi Catherine, appreciate your reply. We are in Herts, and funnily enough, one of my close friends used to work for Age UK and run their social clubs! Sadly the clubs that do still exist (there were budget cuts in this area) are not dementia friendly, although there is one Age UK club that may be an option. Age uk do apparently have a befriending and telephone service in this area, but, to my knowledge not a sitting service. Age UK is a brilliant charity and lifeline, although their provision varies quite a lot from area to area.

Mum did get A Allce which has been suspended whilst she has been in hospital, once she is discharged, one of my first tasks will be to arrange for this to be increased from low to higher rate if possible (I will ask Age UK for their assistance with this!)

Good luck with your dads care, and keep up the good work.