Brian must finish with the Day Centre

[Nan2seven]

After a very stressful weekend following Brian's return from respite on Friday morning, I went to his Day Centre to be present at an assessment of him there, plus his Social Worker. (Brian is so much better this morning, his amiable sweet self, and he had smiled in pleasure when I told him it was a Day Centre morning.)

The SW, Day Centre Manager and I chatted for a bit in a quiet room (a kitchen) before bringing Brian in. The SW asked how the respite week had gone and I told her: Brian had come home injured, incoherent and constipated. She and the manager both made notes.

The manager then said that Brian had on two occasions recently tried to leave the building, that it was a large building and the staff could not be expected to keep an eye on him constantly and that in view of that he was now a risk under Public Health and Safety and they wanted him to cease attending by the end of the next six weeks. I have had two 'phone calls from them about him wanting to leave but had not grasped the implications, both 'phone calls within the last month.

She had clearly already discussed this with the SW as she (the SW) said "As I told you, there are no vacancies in the dementia Day Centre at G------ Road and there are waiting lists for each day of the week." The SW told me that instead there could be payments to me under the Direct Payments Scheme and I could either employ someone to take Brian out for, say, three hours twice a week, or she could advertise for a PA who would have to be interviewed and they would pay the PA for taking Brian out. Did I know anyone who might be willing to take Brian out? "What? A friend willing to take him out on a regular basis and tell him 'Oh, by the way, you will get a salary for doing this'?" "Yes." I have a friend who takes him out about once every two or three weeks, but to ask him to do it on a twice-weekly basis would, I feel, be asking too much of a dear friend. (He is seventy himself and has not long retired.)

Has anyone else experience of setting up an arrangement like this? I would so like to hear that it can be successfully done. But I personally would be stumped when it came to thinking up places to go and things to do. Handing Brian over for six hours a week to someone with no training, however nice they may prove to be, is not something I feel happy about doing at the moment. Can anyone give me some reassurance?

 

[Nebiroth]

Don;t forget that Social Services can help you manage Direct Payments if you want them to.

Direct Payments are made so that people can take control of the services they receive. Usually this means that they take a payment and arrange for their own services; this can be either to replace a service supplied by the local authority, to provide one that the local authority can't, or to supplement local authority services with those you arrange using the cash payment.

This means that you can ask the local authority to help manage the Direct Payments if you want them to. You may ask what the point of Direct Payments is, why not just get the local authority to do it all in the first place?

The answer is, that Direct Payments can be used to pay for a service that the local authority doesn't provide directly itself; what has been suggested to you, that is someone to come occasionally to keep Brian company to give you some respite, is an example of this. Many local authorities don't employ people directly to do this. They provide Direct Payments to their clients so they can arrange for it themselves.

If you're unsure, just go back to the social worker and say that you have no idea how to arrange for the "sitter" - they should be able to offer support on how to go about finding someone who is suitable and qualified to do it.

Direct Payments give you the ability to do everything yourself, but only if you want to. Social services should be able to give you as much help as you want organising how to spend the payments to get what you want out of them.

The "sitters" are quite common. The social worker assigned to my dad quoted several of her clients who had "sitters" who would do anything from just coming round and keeping company for a few hours, all the way up to taking people on outings etc.

 

[Contrary Mary]

Dementia day centre

Hello, my mum goes to a day centre which is specifically for dementia sufferers.

A while back Age Concern lost their contract and the centre was taken over by another local charity. For one reason or another, the hours were shortened considerably, which was a blow as I am so happy with the care that she gets there.

As Mum only went two days a week, I phoned the centre and spoke to one of the staff (ex Age Concern so she knew me anyway) and said that I really needed Mum in for a third day as the hours were now too short (also have my aunt round the corner). She told me that there were no LA places at present, but that I could go privately straight away.

Mum has been reassessed by SS because of her mobility and she is being put on a waiting list for a 3rd day (LA).

I only mention this, in case if you are happy with the dementia centre but it is simply a waiting game, it might be worth having a word with them direct?

Mary

 

[Skye]

Dear Nan

I'm sorry, this must be a terrible blow for you. Even if you find someone able to do the job, finding places to go will be difficuly, especially in winter.

How would you feel about someone staying at home with Brian while you go out? Again, it's not easy, sometimes you just don't feel like going out, and it also means finding things to do for Brian.

I had carers in for John two afternoons a week, most times I went out, but sometimes I just went upstairs for a rest. Not very successful that, John knew I was upstairs, and kept on wanting to come and see if I was alright!

I'd suggest putting your name down for the dementia day centre, John went to one one day a week and it was very good. You never know, you might not have too long to wait.

It's never easy, is it?

Love,

 

[Lynne]

Just wondering ...

I'm sorry Brian's access to the Daycentre has been withdrawn, and wonder if the local branch of the Alz. Society may be able to put you in touch with an alternative.

Is there Crossroads available in your area, Nan? They will 'sit', be walking companions, all sorts of companionship.
http://www.crossroads.org.uk

 

[Helen33]

Hi Nan,

You would effectively become the 'employer' of this 'friend' and this can have disastrous consequences. I have known other do it and manage it but I think the boundaries ought to be much more clearly defined in the case of difficulties which might arise.

Love

 

[Grannie G]

Hello Nan

I could give you a link to the agency I used.

The carers were excellent and met my and Dhiren`s needs 100%. They are insured to take people out, following a very comprehensive assessment, but it would depend on how they felt about Brian wanting to do his own thing.

The agency operates on a Franchise system so each branch is as good as the person who manages it . All carers are dementia trained.

You would not have any responsibility as an employer, the agency covers that, you just have to be granted Direct Payments [DP]from SS and keep a seperate DP Current account.

 

[Nan2seven]

Dear Sylvia

I would be so glad to have the link you mentioned. I have rather put my head in the sand through this afternoon, just not wanting to think about it. But of course I must think and do something about it sooner rather than later. The SW did mention "agencies" this morning but did not make the procedure very clear. You have already made it clearer than she did. It would be so much nicer to have one recommended (although I take your point as to who manages it) than just stick a pin in a list.

And to top it all, I have someone coming tomorrow morning to do a CHC assessment of Brian. But I've done a bit of preparation for that ...

Love, Nan XXX

 

[Helen33]

Hi Nan,

My former post on this thread was rather hurried and I have now had more time to read through.

I think one of the things to get clear is the amount of hours you would be allowed under Direct Payments. Will they be the same hours as Brian had in the day centre? It is true that Crossroads sometimes have day centre of their own and you could make enquiries in your area.

Just a little food for thought. If Brian liked the day centre and he benefitted from being in a community setting, it might be possible to use the facilities of a care home with your own sitter (paid for by Direct Payments). I made this arrangement with Alan and his Crossroads sitters. A council funded care home (a place of excellence) was willing to offer Alan a place in their premises as he would have his own member of staff with him You never know til you try and this may be available to you should you require it. It meant that Alan always had somewhere to go and wouldn't be having to be out and about when it wasn't suitable. Alan did use this care home and it was a really good arrangement.

Love

 

[Sandy]

Hi Nan,

The SW did mention "agencies" this morning but did not make the procedure very clear. You have already made it clearer than she did. It would be so much nicer to have one recommended (although I take your point as to who manages it) than just stick a pin in a list.

I just wanted to mention the fact that all domiciliary care (home care) agencies have to be registered and inspected by the Care Quality Commission (just like care homes). You can use their website to search for services near you and read their inspection reports:

http://www.cqc.org.uk/registeredservicesdirectory/rsquicksearch.asp

Take care,

 

[JPG1]

Hi Nan,



I just wanted to mention the fact that all domiciliary care (home care) agencies have to be registered and inspected by the Care Quality Commission (just like care homes). You can use their website to search for services near you and read their inspection reports:

http://www.cqc.org.uk/registeredservicesdirectory/rsquicksearch.asp

Take care,

Please, also take on board the fact that some of those online CQC inspection reports may be 3 years out of date.

And, as with dementia, things can change dramatically in 3 years, but that is not often reflected in online reports.

However, if you do find a 'place' - be it care home or domiciliary care agency - that seems to tick all your own boxes, then you can ask the CQC to send you copies of any/all inspections that have taken place since the online one. There may be reasons why you might need to change your mind about your 'online choice'.

 

[Winnie Kjaer]

Hello Nan,
My husband too had to stop going to daycentre. Not because he could escape, but because he got too distressed when having to leave home, get personal care and so on. He cried for hours on his return because I had sent him away. Social and I decided that the upset outweighed the benefits.

I now have sitters coming in 2 x 3 hours a week. I do pay for this "privately" but use the same domiciliary company who provide assistance with my husbands daily care. He is reasonably happy with that arrangement and sleeps most of the time I am away, normally from 11-2pm. I use the time to go go pilates and swimming plus the weekly shop, can just managed that in the time allocated.

It works well for us even though it was nice to have one complete day a week when I could do other things.

I am interested to hear you have been offered Direct Payments, nobody mentioned that to me, so i will enquire to see if we would be eligable. I was however granted direct payments for their contribution towards a holiday which was equal to 4 weeks contribution, and as we cannot go on holiday now due to my husbands deterioration, I have been authorised to spend this money on day respite until it runs out. They will however not give me any more as far as I am aware and it will soon have run out. I will enquire though. Thanks for that information.

We are in the middle of applying for NHS continued healthcare, so perhaps this is why she has left everything until after it has been to the panel. It is taking its time unfortunately but I am not too worried because she advised me that it gets backdated to the date of application if granted.

The Direct payments are quite easy you just have have a separate bankaccount for the incomming payments, and keep all your receipt for your outgoing payments. If you use a domiciliary company there is no other book keeping except for submitting receipts and bank statements ever so often. She collects mine every 6 months.

I hope you find an acceptable sulution.

Take care, love x

 

[TinaT]

Hi Nan,

Please don't feel forced into taking the direct payments route. If it is something which you think will help you both, by all means go down that way. If you are happy with the present arrangements but are being told that these arrangements are now not safe for your husband, I would be telling them to find somewhere suitable which is safe for him! Is the day care centre for dementia patients? If so there should be locked doors to prevent anyone wandering!

There is a great push going on at the moment generated by the previous government to get everyone who needs care to go down the direct payments/sort yourself out route. It is being 'marketed as 'giving you choice' but I'm afraid this is somewhat of a misnomer! If you are perfectly happy with what you have already got, then why force you to change?

I did have direct payments some years ago and it worked fairly well for me. But what makes me angry is this pushing of people down that road, without any consideration that what you were already getting was very suitable.

xxTinaT

 

[allylee]

Blimey folks doesnt the level of support vary accross the country!

Im in the West MIdlands and mum was offered two days a week day care to start with , which increased to five some months down the line , albeit three days were at a different centre but both were for dementia care.
Our CPN organised a buddy too who came out weekly to take mum out for a walk, shopping or whatever else she wanted to do.

I did hsve a superb social worker and CPN though, which I understand we were lucky to have.

Im so sorry Nan for your situation...day care is a lifeline for most carers...I do hope they sort something out quickly x

 

[Nan2seven]

Thank you all so much for your replies, all of which I keep re-reading to take in the information.

I had the NHS Continuing Healthcare nurse come this morning (for two and a half hours) to go through Brian's "Needs Checklist" and yesterday's refusal of the Day Centre place turned out to be quite significant. She advised me to go back to Brian's GP and tell him of Brian's three recent TIA's, all pretty close together, his worsening cognitive impairment and no more Day Centre and ask should he be referred to the Community Mental Health team. Plus mention more falls and wandering.

In the checklist he scored A's under Cognition and Mobility, two B's and 7 C's, which means he is eligible for referral for full NHS Continuing Healthcare - but she did stress that the "domains" were split into seven rather than three levels and that Brian would not automatically qualify for CHC. I realise this and am still somewhat bemused by what set this whole ball rolling in the first place. I think it was because the Care Home for March respite asked for a Funded Nursing Care Contribution. Whatever the outcome, it all makes a good basis for the future if it should ever be required.

The next stage/appointment is for 3rd August - and again here at home. (She said she had not done a checklist before at the patient's home.) So the SW, District Nurse and maybe the same person as this morning will come here and gather round our dining-table again, this time armed with files from the doctor who made the original diagnosis of dementia, files from Brian's GP and files from the hospital's Oncology Department where Brian's essential thrombocythaemia is managed. Again it is unusual for this sort of gathering to be held "at home".

This all seems rather overwhelming at the moment. I had said only yesterday to the SW (at the Day Centre) that Brian had been discharged after his Vas. Dementia diagnosis and I felt as though I had been rather left to "get on with it". Her reply had been to go and see his GP if I had any concerns. To-day the (former) nurse doing the checklist said in view of more falls, etc. to definitely go and see him, perhaps on my own to make it easier to open up - and to get upset if what I was telling him made me upset - and I found this advice so much more helpful. Or how much longer would I have just carried on, with things getting worse, before thinking I had a reason to go back to the GP?

Anyway - lots and lots to think about, both from this morning's assessment and all of your kind posts yesterday. Many thanks to you all again.

Love, Nan XXX

 

[Skye]

Dear Nan,

What a lot you have on your plate at the moment! I know nothing about CHC, it's virtually unheard of in Scotland, but I know how stressful it can be. On top of your worries about Brian's care, it must all seem too much.

I agree that you should go and talk to your GP, it may get you some support, and aslo help with the CHC assessment.

Good luck, I hope it all works out for you.

Love,

 

[gigi]

Hello Nan,

It all sounds like an awful lot to take in...on top of caring for Brian too No wonder you feel overwhelmed!

I do hope that the GP is ready to listen and helpful.

Just hoping that you find a way through this maze and that things work out.

Love xx

 

[Winnie Kjaer]

Hello Nan
It sounds like you and I are at very similar stages with our men. I have just had all the people here and all their reports have now been done. The final document will be checked through by the SW, the District team nurse and myself at home sometimes within the next couple of weeks.

From what I can gather from you the only significant difference is that your husband has falls mine does not, because he is totally immobile due to his paralyses, and therefore depending on the hoist and carers. My husband scored A in all the questions except the one about harming others and self harm. There is now a form called FACE Overview Assessment V.6 that follow on from the assessment tool where everything is broken down even further and graded from 1 to 5 my husband scored 4 or 5in most of them except for "Harm to relationshipe/isolation" which was given a 1 because I am here all the time!!!!!!!!!!

This is quite a long winded process my mother was fast tracked so that came through in a couple of weeks, but this seems to be going on and on.
I really wish you luck with your application, and cross all my fingers and toes for the 4 of us.

Take care Nan x

 

[Nan2seven]

Dear Winnie - It is an even longer process then than I understood it to be this morning from the CHC nurse. From what you are saying, I take it that you applied for CHC at some point yourself. I have never made any application for it and would not have known at what stage in Brian's illness to make such an application. I didn't drop the pebble in the pool but I am quite fascinated by all the resulting ripples ...

I hope your application goes well. Am just a bit bemused by "mine".

Love, Nan XXX

 

[Winnie Kjaer]

Hello Nan,
Yes you are right I did apply for NHS CC myself. Well actually I applied for a re assessment for my husband due to financial reasons. *My husband has inherited some money from his cousin)
He is fully funded at the moment, but when this money comes through he will be over the threshold.

I took the opportunity to ask about the NHS CC and our SW got the ball rolling with an assessment from all the people who has ever been in contact with my husband.

I downloaded the tool myself and did my part of i.e. completed it exactly as I see my husband at present. She has visited several times to go through it all with me, the District team nurse has been first alone and then with the SW and now they are coming back to finalise it eventually before it goes to the panel.

As you say it is thorough and lengthly, but if we qualify it will be well worth it. Cross fingers. If not it will as you said yourself be good groundwork for the future.

Good luck x