HOUSE IS A MESS

All about caring
21

The carers are arranged by Social Services, but provided by private company, but its just CARE, not allowed to do household tasks, cleaning etc although one caree does qualify, confusing rules.

One caree to give an example receives 2 hours a day, its some complicated formula, whatevers left after your bills you pay, so if £100 left you pay £100.
But they have to leave you enough to live on Minimum income Guarantee.
NYCC Fair Access to care or something like that.
My caree pays £87 plus pence a week which wipes out PIP care.
No one has explained anything especially not to me but they want all bank details, bank statements and everything.

22

I’m going to put together some information about DRE for New Forest Mencap, but it won’t be finished for a few weeks.
Best summarised as ANYTHING which is a cost incurred as the result of a disability, not included in the financial assessment, can be claimed back from the LA. I’m stunned to discover this, and also very angry that no one has ever explained it to me properly, even my meals out when I take M away for the day count! Certainly if your carees can’t do the cleaning themselves, that should be covered.
I cannot understand why your carees don’t get more support. M has day services funded, and also dom care.

23

Can you complain to your MP or not? This is unfair.

24

I’m still puzzled about the pittance of care your carees get.
Have you seen their Needs Assessments, Personal Budgets, and Care Plans.
In Hampshire they have developed something called a Resource Allocation System, which is the way they turn needs into hours. They are supposed to be open and honest about these according to the Care Act, but they are not.
Maybe you could make a Freedom of Information Act request for information as to whether or not anything like this is used where you live?

M’s is an absolute joke, completely and utterly unrealistic, the Ombudsman is just reopening his case.

25

I don’t fully understand either but generally hour and a half morning call, get up wash dress, breakfast etc, some get a lunch call, some don’t, tea call again half an hour and that’s it. Some do get a put to bed call but you get put to bed early 7pm/8pm.

The carers should stay until all the jobs have done but just run out of time, have to dash onto the next client.

Used to get services but been cut, shopping service, cleaning was included but cut so time taken off.

I have seen needs assessments care plan but despite carees getting older etc, no more help support was given.
Every year the assessment is done and the same written in the care plan , I saw the changes over the years, carees getting less and less able, unable to perform tasks they could last year.

Carees health conditions become worse end up housebound, obviously at this point if you are housebound, you cannot go shopping but no extra help is provided. Just have to pay someone to do it or order off the internet.

Absolute max is 4 calls up to 3 hours total a day I think max but NO NIGHT CARE
Generally at this point caree is forced into care often miles away, you sometimes never see them again but learn about their death in the paper.

There just is no help provided outside the house which is what many need, going out shopping etc.

I have had a good look at the NYCC Social care website but can’t find a lot of info.

There was supposed to be personalisation, more choice and control- person centred care.

The Care Act was supposed to make things better, I haven’t seen any change.

And there is supposed to be more help for unpaid carers, again I haven’t seen any “more help”

26

BB, you should have a TV programme where you help people de-clutter.

Mum’s husband died 10 years ago and we have still not got rid of all the junk. He wasn’t that savvy and his friends always offloaded all their old tut on to him - one sold him £200 worth of off cuts of carpets, they are still in the basement, we haven’t a clue what to do with them; one sold him loads of wallpaper rejects, yes, they are all in the basement too.

About 2 years ago, we ordered 3 skips, all were filled but the junk seems to keep coming out of the woodwork! Not good at all.

27

I’ve had skips. Started when I had sewerage in the garage. My husband became a terrible hoarder as his dementia started to set in. He was a bit of a hoarder anyway, but it became dangerous. Its been work in progress for 3yrs now, and am still picking away at it. I get ruthless at times, being strict, as in something hasn’t been used for years. Can’t bring myself to dispose of some le creuset or dinner service, as I still may cook for the family? Lots of other things gone now, and I don’t miss them. Have a skip on the drive at the moment, as had doors replaced upstairs, the landing and stairs decorated. It’s a very long process. Just chip away as and when I feel ready, and budget of course. Once you start, it inspires for the next lot! I miss hubby very much. However, I realised the other day,that my thoughts are less of what he may think, and more of what I need. He probably would be relieved I’m getting on with it!

28

On the verge, I’ve learned the hard way!
My mum lived in the past. I read a little saying recently _ if you don’t let go of the past it will destroy your future.

The easiest way of getting rid of stuff is through Free cycle. I needed to do away with my garden borders after I was disabled. I put them on Free cycle explaining that they would have to dig then up. All went! People may want carpets to go on their allotments as weed suppressants, for example.

Wallpaper rejects can probably be used for all sort of things too. Otherwise put some out for the dustman every week! Try not to shuffle things around, get rid of them instead. Do you have plans for the basement? It might make clearing it easier if yo decided to make it a sewing craft room or TV lounge?

29

Hello, Londonbound. Well you titled your thread “House is a mess,” and most others have replied to that specific point. I want to take a broader view.

You mention carees - plural.

How many carees do you look after?

Do they live conveniently near you?

Are any of them related to you?

Why are you caring for them?

It does seem to me that you have taken on far too much. I care for just my wife and that takes a huge chunk of my time. We pay a cleaner and a gardener. I’d love to do more gardening myself but there is simply not the time. In my younger days I did not think of retired people paying others to do this but this is where we are at present.

It does sound as though these carees could do more to help themselves. Bowlingbun has answered a few times, trying to help with the problem of paying for cleaners to do the work that carers will not do. Do try to follow her continued advice.

But really it seems that you have been too willing to do what others will not do. I would recommend you think about relieving yourself of some of these caring duties. It would be better for you if you could easily find the time to keep your house in good order instead of running yourself ragged looking after all these people.

If you can tell us a little more about these people you care for then perhaps we can help further.

30

It is very difficult to explain so I will just ramble on, my disabled wife and i moved into a ground floor flat , the area a lot of disabled people, we made friends with others , you just get involved in their life’s, you go to each others houses, chat, have meals together etc, that’s all fine.
There was at the time support available, a lot of care, disabled transport, charity’s to help out.
But inevitably these disability’s get worse, in and out of hospital, and instead of providing more care and support after discharge, nothing extra was provided, the theory is that the family’s will step in and help, majority of these people had no family’s and no family support.
So you as a friend step in to help, foolishly thinking that you go for a carers assessment that everything will be sorted.

There was the big freeze , massive cuts in care, and the NHS, the charity’s lost money and could no longer provide vital support workers, the care fees went up and up, services went down in quality.
So from being a friend you turn into a carer, you help and support the best you can, but being an unpaid carer who do you turn to for help, who listens, who understands?
You try to get your carees more help, but the help has been cut and that’s it, no more help provided.
A needs assessment, just provides basic care and we don’t do this, we don’t do that and that’s it.

Paying for extra help, as i have said care fees went up, the free disabled transport has gone, these aren’t people who have worked all their life, got a good pension, own house, money in the bank.

There simply isn’t the money to pay for a cleaner or extra help, but that’s what social services say, you are stuck between a rock and a hard place.
Its a choice between heating and eating, so paying for a cleaner or paying for a taxi, just impossible.
And i haven’t even mentioned debts from having to buy specialist equipment that just isn’t available through the NHS/Social Services

Yes i agree i have taken on too much but what do you do? you sit there hoping for a solution, you get an advocate hoping they will sort it out , you go through complaints takes months, and at the end you are no better off.

“It does sound as though these carees could do more to help themselves”
These carees are severely disabled, multiple health problems, can barely leave the house and heavily reliant on social services. But have no choice but to turn to friends to help.

They are left basically high and dry.

Multiple cuts in care and support, the Care Act should give more choice, more control, to enable the disabled to lead independent healthy active lifes but the money just isn’t there.
There are organisations that help the elderly disabled, but we don’t push wheelchairs and we don’t toilet meaning severely disabled are just stuck at home unable to go out.

so what can they do? how can they help themselves, do more get more help?

The reality is that they can’t, the help isn’t available.
Going through complaints, attending meetings, going through the ombudsman, some of these can’t get out of bed without help, can barely make a cup of tea, expecting them to fight fight fight and damage their health even more.
It is only by kind hearted people like myself and millions of other unpaid carers, that these disabled can have any kind of life.

I have explained my issues time and time again and yes got suggestions, contact this place contact that place, but severely disabled means specialist services which have been cut.

My carees love it when i take them shopping, just getting out the house, that’s like going to Disneyland for them, they need help pushing a wheelchair , help reaching things off the shelf, help at the checkout, help with money, help putting the food away at home. Its just not available through social services.
Or going out for a meal, need help cutting up their food, help in the toilet, the lack of disabled transport and needing a carer to help just makes it impossible to go out for a meal themselves.

These are just 2 examples , there are dozens of others.

Basically these carers need full time help on call , services to live a proper life, going shopping, help with a meal, going out seeing friends, help going to the GP/Hospital, proper help in the home in case of issues- emergency help, in case of falls or illness.

but all they get is dash in, dash out carer packages, i have seen other posts, the carers are there for 18 minutes, that’s not enough.

I like helping people and it gives a boost to self esteem, seeing a nice clean floor, cooking a meal for someone who says “that was lovely”
But I should have choices, I should have breaks, I should have time off.

And my carees don’t want to rely on other people, they have pride, they feel guilty asking me, but frequently have no choice.

The problem isn’t that carees should do more for themselves, Social Services should do more, i think honestly they live in cloud cuckoo land expecting someone elderly, severely disabled and multiple health problems living on their own with NO family support to survive with such a basic care package.

So solutions on a postcard?

31

It’s the same with LD services here. Either there will be some sort of catastrophe highlighting the problems, or someone will build a fighting fund of some sort to make a legal challenge. Councils are not doing what they should.

32

Thank you, Londonbound, for your lengthy reply. Your situation is much clearer now. You have moved into a “cluster” of disabled people which was effectively a mutual-help group, but has gradually changed to a mutual-dependency group. You are a kind and generous person who gets pleasure in making lives better for others, but unfortunately reduced assistance from social services has brought matters to the situation where you can no longer cope.

I have read your various threads. One point that comes across is that you do not seem to get on well with your GP practice. You could well consider asking around for the experience of others and considering a change, which could ease the strain. My GP practice has me registered as a carer and has been very helpful with support, including holding an annual “event” for carers.

I also note that Michael from the Carers UK team has been in personal contact. You have a massive load to bear and I hope that this will result in useful advice that will help you on your way.

33

That is a very accurate description and true Mutual dependency, it was supported housing but there have been massive cuts in all areas.
And I don’t think people really realise or understand the full implications of all these cuts or don’t care.

I have a car, can jump in my car, 10 minutes, I am at the supermarket, or gp or hospital, easy for me but my carees don’t have cars, just can’t go anywhere without help.

And getting pleasure, you get self esteem from helping others but all the time just makes you miserable and depressed, having no choice but to help.

And changing my GP, it is a massive practise, surely they should understand about disabled people and cuts in care and the strain that unpaid carers are under?
There is no carers register, it is nothing to do with them, it is up to Social Services, care and unpaid carers to provide the help and support.
In my area it is all integrated teams, health and social services and community teams specifically for the elderly/disabled all working together but they don’t.
I have heard in some areas the local carers centre has an allocated worker at the GP surgery to help and support carers, they can talk to the medical staff, advocate for carers, provide a listening ear to signpost carers, but again nothing at my GP surgery.

I have thought of changing , the practise has 30,000 patients, hundreds of elderly/disabled, hundreds of unpaid carers, and should realise what is going on.
The practise should move with the times and adopt modern methods helping and supporting carers, they should be forced to.
Why should we have to change to get good service?
But what is to do with the Gp, The GP cannot provide shopping, cleaning and emergency Social care.

Michael has been in touch but having a needs assessment, a carers assessment isn’t going to change things.
Social services will not and do not provide more help but come up with ridiculous suggestions, can’t you do this can’t you do that.
The internet seems to be the key to getting help , encouraging the elderly/disabled to use computers to find services.
I grew up with computers, these elderly have never used a computer in their lifes, how can they order shopping off the net.
Home care is just going, the future is Extra care units as I have said in another post, you get your own flat with day care and night care on site, These are lovely but it means elderly disabled leaving their own homes, communities and friends and relocating to these Extra Care sites.

I have had enough of caring, fighting, everything, providing help now is too late as I am unwilling to care anymore.
Londonbound Gone.

34

That’s a big practice. Too big to care. Too big to change. So it seems.

That’s why I think you would do well to make enquiries and consider a change to another practice, where there is support for carers.

Why should we have to change to get good service?
But what is to do with the Gp, The GP cannot provide shopping, cleaning and emergency Social care.

It is a sad fact of life that some things are not as we think they ought to be. You have a choice - deal with the problem and make things better for yourself or do nothing and complain about how unfair things are.

No a GP cannot provide shopping, cleaning, etc. But they can assess how well you are coping and as you say ought to be supportive with their advice. You don’t sound as though you are getting this support.

The internet seems to be the key to getting help , encouraging the elderly/disabled to use computers to find services.
I grew up with computers, these elderly have never used a computer in their lifes, how can they order shopping off the net.

I don’t know how much time you spend traipsing round the shops for these people, but, as a suggestion, you could do the online ordering on their behalf, thus reducing the demands on your time and effort.

35

There are so many answers to your post Denis, one that like many unpaid carers I have so little free time that I rarely see the GP, and what can they do in 10 minutes, I have complex illness’s and all GP time is spent trying to sort out my complex chronic medical conditions.
I do not get the chance to see other carers cannot get recommendations about other GP surgerys.
The GP should yes be assessing my health and giving me good advice and support, I really don’t think they understand the whole situation.
10 minutes isn’t enough to explain the full complex situation to the GP, multiple carees who have had virtually all their services cut.
There again seems to be this rosy picture that you contact Social services and they do everything

Unless someone knows the full facts than they cannot give good advice, it does not help that Social services are giving incorrect information to the GP.
That I have refused help and support, I haven’t refused help or support, I have refused having my wife sent to a day centre, why would my wife in her thirtys want to go to an elderly day centre to give me a break?
And shouldn’t it be the carers centre who are giving support,NYCC have given them the contract?

It is not what is needed, help advice and support, a day centre is the only thing available.

Shopping as I said my carees are stuck at home bored out of their minds, they want to go out socially, go to a big supermarket with a café there, have a good hot meal, chat with their friends and have a good wander round the shop choosing what food they want, but they need extra help to do this.

They don’t want to go on the internet or have someone else ordering their food and who puts all the food away, the food delivery services don’t do that.

And myself shopping, its the only break I get, get out of the house, have a chance to interact with people and get out into the world away from caring.

It is a very difficult complex situation, I am piggy in the middle, I clearly need and should be getting support.
But people just argue with me, so I gave up trying to get help 6 years ago, just couldn’t be bothered with all the arguments and fighting and letter writing.

But as Chris said in one of his posts, you provide more support for the carees, reduces the pressure and gives unpaid carers breaks, if carees were properly supported, it would reduce a massive strain on unpaid carers, reduce their damaged health, depression and anxiety.
Enable unpaid carers to get back to work, raise their self esteem , get a decent wage, build up a pension for the future.

I have looked at one GP surgery who yes does do carer support, so yes will check it out but basically my carees need more support which in turn will decrease the strain on me.

36

I would advise you not to bother so much about it. Indeed, It is really very difficult to be a carer, work and keep the house clean, this doesn’t not worth your extra emotions and nerves. TO tell the truth, caring for a person tires a lot and takes all your energy, there remains nothing to yourself, especially since there is never enough time for cleaning. That’s why there are such companies to help us. We always call to help this one Room413 | Los Angeles Expert Home, Tiles, Carpet Cleaning and I never ashamed of the disorder we have in our house. They perfectly put everything in place and wash all. And it is their business, they gain on it and they do it well. It is normal to use their services when you need them. Take care of yourself and your time.