Any ideas what to ask for?

[zoet]

Hi everyone, Im just wondering if any f you have any ideas on how to get me back to work? My maternity leave finishes in february, and ONLY for financial reasons I am considering going back to work. Aron and I are struggling on just his wage and Tax Credits, and we do use some of dads money to pay for his keep.

Dad has a new SW who is coming to meet us for the first time next week and I am unsure in which direction I would like dads care package to go. Can dad be looked after while I am not at home? If he has to pay for this help I will not go back to work, because I think he should have CC, and Ive spent the last few weeks asking opinions from the other people involved with his care- the DN, OT, Day Care Manager, Crossroads Manager etc. I have asked these people to write every detail about dads problems in his Care Plans and notes, so that we can build a body of evidence for a panel. As I have mentioned before the CPN is- not exactly reluctant, rather "slow"- to initiate the checklist assessment, and I am unsure myself on how to, or when to ask her to do it. Dads health is very unpredictable. he has more bad days than good days now, and needing alot more input. Soon, I can see, i will probably need some help, even if I dont return to work. The trouble is, the agency that our LA use is appalling and few of the carers provide care to a decent standard. If dad were to acheive funding from NHS will they use these carers? Would he still be able to attend day care? Who will look after him if not? He MUST remain at home, and at no point will I be persuaded to place him in a NH. (Unless i am very ill or dead!)
I have no idea what i should be asking for in terms of help in the future.
Incidentally, an absolutely FABULOUS Direct Payments officer is offering me support, by coming to the next meeting and simply allowing the SW to see that myself, Aron and the children should be being offered MORE help as more of our time is taken up with dad. It is a bad time to be asking for this as the Council are on a massive cut back across the board. Some SWs have resigned due to stress and depression! It is a very hard job for the ones who genuinely care.
I would like to present a clear and organised case, which i can do as far as Dads current condition is concerned, and the struggle we go through. But I just cant seem to get my head round how things will work next year and what help to ask for. i also do not want SS to regard me as not coping, because I am as far as caring for dad goes. Its just the financial side of things because we've lost my wage. If they see my asking for help as not coping, do they have the right to insist dad goes into care? It would definately NOT be in his best interest or his wishes.
Any ideas which anyone can offer on how to go about things would be very welcome.

Just so you get a clear idea of what help dad needs:
he cannot make his needs known as he has no communication (verbal non verbal) skills at all, other than agressive outbursts when he DOESNT want to do something
his mobility is very poor, even standing and transferring, and very unpredictable, days off feet completely, and then others able to walk short distance.
he is severely cognitively impaired
he has NO idesa of risks in any form
he gets frightened and agitated when left on his own for more than half an hour or so
he is very underweight and has no appetite, soft diet, and on liquid supplement
his moods are unpredictable, and he can be verbally and physically agressive
his has had quite a few falls
he has a break on the crease in his bottom which is dressed by DN
he is doubly incontinent, self evacuates faeces, and has no urge to pee or poo
We have lots of equipment from the OT to help, but there are days when two people need to help him. this is unpredicatable.
He can become very very withdrawn, almost semi-concious, or be very manic.

I just dont know where to start with how someone else would look after him at home.

 

[donkey]

zoe im not going to be much help im afraid as never reached that point yet. hopefully you will be able to get a full care package to come in when your out hpefully fully funded . it sounds simple dosnt it well it would be for us. we no what we need and want but its all about proving it to aeveryone else. sorry no help someone else will be xx

 

[zoet]

oh thank you donkey for your kind words....I dont think anyone will be able to help me this time to be honest. I'll just have to try writing down what I want and then work out how best to put it to the SW. I think I feel a bit paranoid about what i tell her and ask for because they recently made an attempt to control dads finances in the future, which suggests to me they would rather have him in a home. This really worrys me and its made me frightened to ask, which isnt like me at all.

 

[larivy]

zoe im afraid i might not be much help i had to give up work 2 years ago to look after mum 24/7 i get direct payments for 30hrs aweek but i dont get any other services respite,daycare ect so i dont know how that is paid for larivy

 

[Bookworm]

Zoe - I really don't know what to suggest either but I don't want to just walk by on the other side of the road.....the issue is one of safety isn't it?? Lots of issues e.g. around hygiene and keeping his skin intact if he has periods on his own. & you say 30 mins on his own is maximum. I can't think of any system of support that can replace the quality care you give. If 30 mins is all he can cope with alone then - awful as it must sound - would some sort of medication reduce his anxiety while on his own?

I just wish some way could be found to support you financially in doing what you do.

Presumably finance (i.e. benefits) is the key to it all along with a care package to support you..........I hope you get on really well with the new SW next week with that fabulous payments officer in attendance

 

[jenniferpa]

I don't know whether you would consider this, or if it is even possible in your area, but some homes offer day care for those people in your situation: it's normally more cost effective than having individual carers come in to the home, they have all the equipment they need (and the staff to man it) and you have the security in knowing that if a staff member is sick, there are other people to take the strain.

P.S. I know you use some day care, but this would be more structured and for longer periods (e.g. 9 - 5)

 

[Skye]

Zoe, I'm not going to be much help either, as we were both retired when dementia struck.

But I think you should cultivate your DP man. Talk to him about personalisation of care, that's the hot potato these days, I don't know if your area has adopted it yet. But under that scheme, you should be able to get whatever help you need to keep your dad at home. I'm assuming SS would have to fund your dad if he went into a home, so they won't be anxious to do that. Though perhaps I'm wrong, and your dad has funds.

On the other hand, SS should support your application for CC if your dad has to be funded, as then the costs would pass from them to NHS. Check this with the DP man.

I wish you every success, I think it's shameful that someone like you who would do anything to keep your dad at home, shouldn't receive the support you need.

Love,

 

[Grannie G]

Because my mother lived alone and I worked, she attended day care Mon-Fri 9am-5pm. It was very successful.

 

[Natashalou]

hi
wow you certainly have a lot on your plate and I feel for you . It seems to me in your circumstances its financial help NOT to go back to work you really need, judging by your initial comment. Even if suitable care can be arranged for your dad while you work, and thats a big if, there are bound to be occasioanl hiccups and if you are coping with a baby and job as well id fear for your own well being.
so. have you asked about a carers allowance , and is it worth approaching your employers to see if there are any career breaks and/or voluntary redunancy packages on offer? You might be able to get a cash boost to help for a while.
On the question of CC id receommend downloading it and filling it in from your perspective rather than relying on notes etc. My own mother died during the battle for CC but in the two meetings we had, it was clear they really had no idea at all as to her needs.
Good luck and I really hope things work for you somehow xx

 

[Vonny]

Dear Zoe

I've just been googling day centres close to you and there is very little available is there. I agree with Jennifer that full time day care may be the best option. I'll PM you the link to the one I found, it may be the one your dad already goes to. Also, do I recall you don't drive (though I may have that wrong ) in which case it would have to be a centre which collected and delivered.

I think you need to list exactly what you have told us about your dad, and present it to the CPN, the SW, the man from DP and your dad's GP. I PMd you a document with the tool they use to assess for NHS CC some time ago. Let me know if you need it sending again. I'll also PM you a copy of the national framework which I think is in a different link and you can highlight the relevant passages and quote it at the SW.

It's a fine line to walk between saying "I can't cope" to get NHS CC and full time care for your dad, and saying "I can't cope" and ending trying to prevent him being taken into care, and I don't envy you the job my love.

I so wish I could send our erstwhile SW to your neck of the woods, she'd have it sorted out for you! Will PM you later

Vonny xx