Respite Care......Rock and a hard place.

[Vonny]

Good Morning Gigi

Hope you had a decent(ish) night's sleep and are feeling a bit better this morning.

Would they say that to someone carer that is caring for someone that has cancer? just because my mother has not got a date from the doctor when she going to die. I have to put up with 2nd hand care.

Maggie, this is so true. My sister, who lost her husband to a brain tumour some years ago, often compares the marvellous care and support which they received, with the lottery which AD sufferers encounter.

Gigi, I hope you get somewhere with SS today. If you could contact your MP I'm sure that would help. Someone somewhere must be able to help you. I'd offer to come and look after Eric myself if I was able to lift at the moment

Good luck today

Vonny xxx

 

[Whiskas]

Hi Gigi
So sorry you have reached this point I can remember only too well feeling like this last year when I was still looking after Mum. I was forunate enough to have a good Care Manager (Social worker) who after hearing my plight from local AS carer support worker arranged for a Rapid Response Team to come in and sit with Mum over night for 5 nights at a time. I stayed in the house and slept (well some of the time!) whilst the carer dealt with Mum. I could have gone out and slept somewhere else but as they had to leave by 7 it would have meant getting up extra early. This service could be accessed once a month as an emergency to help me while SS sorted something more permanent. I used them for 2 months. Another arrangement was in the process of being looked at last August when Mum broke her arm got a DVT went into hospital and stayed there until she died in October so I don't know how well things would have worked. At least I can tell you our SS were willing to try something. I was to have a night sitter 3 or 4 nights a week from an Agency. We had to make a contribution towards the cost which was a bit of a stumbling block but we were trying to work round that when Mum fell.

Also we had direct payments for a sitter for Mum 6 hours a week and found them very easy to manage with help from an agency who prepared the pay slip and told me how much tax to pay Inland Revenue etc. They charged for this but that payment came out of the Direct Paymant acount on a direct debit so I didn't have to think about it.

Mum didn't like the nightsitters and I'm not sure how our Care Manager got Mum to agree to having them the first time but he did! It's the way they phrase the question that makes the difference I think.

I know how hard it is to battle on feeling as you do but if you can hopefully there should be some help at the end of it. I know when people told me to take care of myself or I wouldn't be able to take care of Mum I didn't really know how to do that but they were right. So if you can find away to look after yourself do please try.

Not sure if any of that has helped but you know you are not alone here on TP and that used to help me. Hope you get some help soon.

Love Cathyxx

 

[Cl13]

Hi Gigi, so sorry to hear about your LA, my heart goes out to you.I have only had S.Worker for about a month buts she's great, she got mum into day care on Tues 3wks ago and has rang me today to tell me we can have Wed as well, and is also wanting to get her some residential respite to get her used to it incase she has to go permanantly in the distant future, the respite for day care and short stay is also the care home where mum may live and has rooms for 16 dementia residents.This is the help we asked for.
I hope your LA can be more helpfull for you, I cant understand all these meetings and assesments your having to have, mums GP and S. Workers met together in our home and thats the only meeting we've had, they have both phoned a few times to make sure we're all OK. Good luck with your " support ". Lynn

 

[gigi]

Variations on a theme...

Thanks for your contributions....they are all helpful and I'm grateful....this is such an "uneven playing field"..

Maggie..thanks for reminding me about Direct Payments via Norman's thread..it may be ultimately my only option...so I'll try to think more positively about it.

Last night I resurrected some old colleagues...and put the word out that I may be in the market for overnight care..(I think someone here suggested I give it a try..thankyou..I've done it!)

Today one of the managers from the "In-house Dementia Care Team" popped in unexpectedly to file some papers in Eric's folder..(these are the people who do the shower call)..and I told her about the SW yesterday...she was astounded by the attitude..but not surprised at the result of the meeting. It's easier and financially more lucrative for SS to place people in residential care for respite..irrespective of whether their needs are met..or those of the carer, come to that.

At her suggestion I'll wait to see what,if anything ,SS come up with...and get Eric's CPN..and possibly his consultant too involved.

I still have this awful feeling lurking..about getting Eric's consent..it does plague me. He has no concept of the impact AD is having on himself..let alone me.

Love gigi xx

 

[jenniferpa]

You know I've been thinking about this consent issue. Now I know it is totally unreasonable for them to expect Eric to consent but, do you know, I'm not sure why he should even be asked. After all, it's your home too. If you want someone to spend the night then surely you have a right to ask them to do so? Even when there is a financial reward involved. In fact, thinking about the whole thing while it "might" be necessary (even if it is stupid) to gain his consent to be placed in a care home for respite, since he's not being relocated under your plan, you could take the stance that it is your decision and your's alone.

 

[Skye]

What good thinking, Jennifer.

I didn't need consent when John's son came to stay overnight, so why should it be different if it was a friend?

Of course, you'd have to do it via DP, I'd think. If SS were involved in any way, I think they might still want consent.

And yet, you don't need consent for someone to come in for bathing, so what's the difference?

What a minefield it all is!!!!

 

[Mameeskye]

Hi Gigi

That was always one of my pet hobby horses, getting the consent of someone with dementia to do something that was good for them.

I could never understand how, as a mother, I would be neglectful if I did not force medicine down my toddlers' throats even if they were kicking and screaming but that forcing the medicine on someone with dementia, who did not want to take it but it was for their own good , even if gently given, hidden in food, would be classed as abuse.

Sense???!

Hope that you get everything sorted out soon and get a break.

Love

Mameeskye

 

[Margarita]

it's easier and financially more lucrative for SS to place people in residential care for respite..irrespective of whether their needs are met..or those of the carer, come to that.

you could be right there .

I was talking to someone yesterday from mum agency who came around to check all paper work from hand over books from carers where being filled out properly.
So I ask him how much does it cost for someone to stay over night.
He was telling me it’s a flat rate of £ 39 a night if the person does not have to stay awake, while staying overnight with the person they care for .

But if they have to stay awake all night then it charge by the hour, he was not sure how much it was by the hour .

 

[gigi]

Thanks all!

I've been mulling this over...

I think if I go for Direct Payments I won't need Eric's consent..as I become the employer.

Whereas if SS commission someone to come in..they are then the employer and that's when the consent issue arises..

But I may be wrong....

I've not heard anything back yet!

Maggie..I've checked out a local agency which does "live-in cover"..they charge £12-£13 pounds an hour for overnight..that's the minimum...and about £435 weekly..again minimum rate. The cost increases depending on the amount of care of the person they are looking after needs.

Love gigi xx

 

[Vonny]

Good Morning Gigi

It looks like things are starting to slowly come together now. You will be doubly worn out by the time this is all sorted and need twice the break

At least if you don't need to get Eric's consent that is one hurdle you don't have to face.

Hope you have a grand day today and that you can get the DP etc arranged, or at least the ball rolling a bit quicker. I do wish SS realised how important our individual cases are. It's all in day's work to them but it's our lives they are dealing with and their processes should take account of that, not add more layers of beaurocracy to an already unwieldy system. I'd like to go in and shake them all up

Take care of yourself

Vonny xxx

 

[Sandy]

Hi Gigi,

I found this link about direct payments and consent which might be relevant:

http://www.cat.csip.org.uk/index.cfm?pid=421

That is a page on the Health and Social Care Change Agent Team (CAT)web site which has some interesting stuff on it.

Take care,

Sandy

 

[gigi]

Thanks Sandy...

That's very helpful...

Direct Payments can only be made with the consent of the person involve

...the first line I read..

I suppose it depends on whether the DP is made to me..as carer to buy in Respite care...or to my husband..as a sufferer..to buy in someone to replace me if I'm not around..

Or am I making it too complicated?...

Love gigi xx

 

[Grannie G]

Thanks from me too Sandy.

Further down it says;

The requirement to give consent was never intended to act as a barrier to Direct Payments but rather as a safeguard for those people who preferred to receive services directly

I`m sure both Eric and Dhiren would have no quarrel with that.

 

[Sandy]

Hi Gigi and Sylvia,

If you look at the Case Studies page:

http://www.cat.csip.org.uk/index.cfm?pid=420

and also at the further case studies link at the bottom of the page, it seems that Direct Payments can apply both to the person with dementia and also, based on a seperate assement, carers (the case studies in the Word document mention a 'Carers Grant').

On the one case study given for Claire and Tom, the quote:

Once Claire understood that Direct Payments would enable her to choose the people coming in to help her at home, and that Tom needed a break from helping her get up in a morning, she was excited by the possibility.

seems to cover both - getting extra help to reduce the load on the carer enabling the person with dementia to stay at home longer.

Take care,

Sandy

 

[Grannie G]

Thank you Sandy.

Thank you Sandy. It sounds good.

Now we will see how good. I sent a self assessment on 1st March 2009 and received an acknowledgement on 2nd March 2009.

 

[Richard E.]

Hi Everybody,
Please forgive me, if I repet or go over old ground, but as far as consent goes, were does the new power of attorney thingy fit in. I thought it gave you greater powers. Also. it might be that I live in Wales and I know there are different benefits in different area's, a problem in itself. I have just had my first respite and fulling believe, that when the doctor, who diagnosed my mother said one of the most important things was to try and keep her in her own enviroment, as this would slow the progress down. Therefore I looked into home care and also found the local Social services, do not have anything in place for this, but fortunately, the local crossroads and age concern working together (something the bigger institutions could learn from, some hope) to cover for me to have a weekend away. The sitter from Age Concern covering the 9.00pm to 9.00am for two nights and Crossroads coving the rest (no cost to me), greatly needed, but without charities appears almost impossible.
Has for direct payments, why, to me it is another way of passing the responcbilities of the NHS and makes life easier for them. Not all of us need this extra pressure and due to poorer education system are either able or confident of understanding the responcibilities of direct payments, so what happens if you get in trouble with it. Iam no expert for checking a persons ability and capabilty to do the job, never interviewed anybody in my life. Know, considering what's happened in other areas of Social Services and their ability to check people's suitability and all the service available to them, they get it wrong, what chance me.

Richard

 

[Sandy]

Hi Richard E.

As far as I understand, there is no direct link between power of attornery and direct payments.

You're right that Direct Payments would not be right for everybody, as some people would find the process of applying and managing it too daunting.

I may have this wrong, but I don't think with Direct Payments that you have to employ a carer directly - you could still contract that service through an agency. But you would be able to choose the agency and have more say in the whole process.

You can find agencies that provide home carers through the Care Standards Inspectorate for Wales' web site:

http://www.csiw.wales.gov.uk/dataviewer/index.asp

Just search on Domicilary care and the area where you live. I just did a quick search for Newport, and both Age Concern and Crossroads came up in the results.

Take care,

Sandy

 

[jenniferpa]

As far as I can see, everything Sandy has posted is spot on.

The only think I would add is - from everything I have read respite is a benefit for the carer, not the caree. So any direct payments that were forthcoming for it Gigi would be on your account not Eric's and as I said previously consent on Eric's behalf would be irrelevant if he wasn't being relocated.

 

[Sandy]

Here is another link from the Princess Royal's Trust for Carers:

http://www.carers.org/respite-care,59,TP.html

I really can't answer the questions that Jennifer raises about the division of needs between carers and cared for.

For example, this government web page on direct payments for carers says:

http://www.direct.gov.uk/en/CaringForSomeone/MoneyMatters/DG_10018517

You cannot use direct payments to buy services for the person you care for. They can only be spent on getting the support you, as a carer, have been assessed as needing.

So, I'm not sure how that fits with hiring a in-home night sitter for Eric to give Gigi respite.

Also, I am equally clueless about Jennifer's commment:

...as I said previously consent on Eric's behalf would be irrelevant if he wasn't being relocated.

My slightly paranoid mind would expect social service to get some indications of Eric's consent to a carer to look after his need's while Gigi is away.

This just goes to show what a grey area (or black art) this area of policy is. I suspect some social workers themselves may be operating on hearsay rather than properly documented policies and procedures.

Take care,

Sandy

 

[jenniferpa]

This just goes to show what a grey area (or black art) this area of policy is. I suspect some social workers themselves may be operating on hearsay rather than properly documented policies and procedures.

I think that's absolutely correct - making it up as they go along seems to be SOP sometimes.

It's just most people indicate that respite is written into their carer's assessment rather than anywhere else. Still, as you say, that doesn't gel with this

You cannot use direct payments to buy services for the person you care for. They can only be spent on getting the support you, as a carer, have been assessed as needing.

However, that seems slight on the silly side anyway - the 2 things are indivisible it would seem to me.