carers whos carees refuse help

Share information, support and advice on all aspects of caring.
What happens to us?
We are forgotten about. Have no rights, especially if our carees are of sound mind and over 18.
Unless a caree with sound mind will agree to help there is no help for the carer, full stop.
Carees of sound mind have the right to choice.....(thank goodness).
we havent. We just have to carry on coping as best we can.
Does cuk acknowledge this?
and, as the voice of carers, what is cuk doing to identify this issue and help isolated carers
who have no help because their caree refuses it? (as is their right , thankfully....there but for the grace...etc)
I dont want the usual go see gp, ring s.s , cab, search charities etc advice,
been there , got the t shirt, and got nowhere. Even had the so called carers assesment 2 yrs ago which proved useless because , get this, the s.s. told caree that as she was over 18 she shouldnt be living at home and should be in supported accomodation. They set her back in her health big time because of this. Thankfully she is getting over this now at long last. We havent seen or heard from the s.s. since she told them that day that she wants to remain at home. And we want her to be at home. Who can blame her for not wanting the s.s. to intervene now? We cant get any benefits as husband is working for just over the cut off point to qualify.
22 yrs of 24/7 caring and poverty in retirement to look forward to very soon. Also bad health.
The truth is, that carers and their carees are not cost effective . We are unprofitable commodities. We cant contribute to the state coffers because we have no choice, yet, we save the state billions every year through caring for our loved ones . Thankfully, for the time being , we have the choice to do so.
The new mental health act that has just been introduced gives much cause for concern.
Is cuk addressing the possible issues that could arise due to this act? ....re -carers who need help yet their caree wont accept it? Could a caree be forced into state care without thiers, or ther carers agreement because their carer gets sick, has an accident , needs a break, or even a little respite occasionally? When the state gets hold of profitable carees, they want to keep them. Look at the recent cases of carees agreeing to respite and the state not letting them back home. The s.s find ways of keeping our carees in care once they start on the bandwagon so they can keep the carees allowances , and have new caseloads in order to keep their jobs.
Nowhere is the 'individual' needs of a caree and carer taken into account by state provision.
It is accept what is offered or do without.
Tried 3 yrs ago with s.s. community assesment team, it was useless. They didnt recognise carees academic intelligence and treated her as a freak because she didnt want to go to pubs and drink, or take drugs or party. etc.
Caree has more qualifications than the s.s. carers who were sent to 'care' for her could ever hope to get.
No wonder she wont accept help from them and I dont blame her.
Its just a pity she had a terrible breakdown because society and peers didnt accept her because she is classed as a geek by the world. No wonder she broke down.
I wonder , if Stephen hawking was starting out now with his disability, what would happen to him in the future.
Support for carers and carees who dont agree with what they are told to do by the system is non existant. Mass labelling of carees and carers so called requirements is not acceptible .Paying privately over 15.00 per hour for someone to just sit in, yet us carers only get pennies for doing the same 24/7 is just not acceptible.
Cuk,what are you doing about this, and the carers who cant get help?
2 yrs ago I asked you on here the same question, you said on line that nothing could be done .
It was a very hurtful and disheartening answer to me.
Has anything changed?
Are you doing anything to adress this?
So why, if not, are you the voice of carers?
best wishes
tinker.
Tinker, I can't possibly know all the ins and outs of your situation, and I can only make suggestions that you might or might not be able to accept, but I would point out that the three of you need to talk together about what help you would all agree to BEFORE approaching social services or anyone else for help. Any assessment is useless if it only offers what social services think is appropriate.

Direct payments could be a way forward so that your caree has a choice in who provides her services and how they are provided, and this might be used to prepare her for the time when she will be without your support. Even if that is a long way off yet, as I hope, it's as well to prepare gradually now. Just in case. While my son is very different from your caree - whatever qualifications he achieves will be low grade at best - we are preparing him now before the problem arises. Your caree may need a similar approach because of her mental health - I don't know. Please don't take this as an insult.

For many carers in your position, it is sometimes forgotten that you also have the right to refuse to carry out certain tasks or to refuse to care altogther: I realise that the last point is not an answer in your situation but perhaps there are things that your caree wants you to do that you do not want to: you may be able to reach agreement about that, at least, as a starting point?

The rest I'll leave to the CUK team. Hope this is useful, at least?
Thank you Charles for your kindness and reply.
And thank you cuk for not replying.
I didnt expect you to.
Charles, direct payments is available to my caree but she wont access this. She wont have the assesment. it is her choice, her right, and as she is over 18 I have no say, though it is hard for me, I am glad she has her right to choose. Sheknows what the s.s. are able to do. Her answer to what she would she do if I couldnt care is not acceptable to me.
Slowly, I watch 'A beautiful mind' slip into reclusion .What can I do?
We all know that parents of children over 18 have no say anymore.
I will never, ever walk away, though sometimnes I feel I could so easily do it.
I care for my mum who is 83 too.
She too is holding on to her independance , She is scared of having to go into a home.
my caree has cerebral palsy and cannot walk , she has extreem incontinence issues, also psychological isues. Phobias, panic attacks, and is scared of the world. She is an angel.
Yet, she is so very very academically gifted.
In a recent visit to the British museum, she held a group of japanese tourists and the museum guide in awe as to the history of the artefacts there.
The guide didnt know as much as my daughter did.
why are carees classed by state as being unprofitable?
Why cant the state accept that just because an indiviudal has a so called 'learning disabillity' ........... because they cant walk or do practial things for themselves...without assistance, that they cant have an intelligant mind?
Where is the support for them and their carers?
Cuk, why cant you stand up and fight, after 40 yrs, carers are still only getting a drop in the ocean. Min wage... in years to come...
Its not acceptible. You should be fighting for the 6 billion pounds we save the gov every year to be ploughed back into services for us and our carees.
As you are the self appointed 'voice ' of carers.
tinker
Hi Tinker

I'm sorry if you are disapointed at not getting a reply. we do explain in the FAQ's of this site that we cannot give advice on the forum. ( http://www.carersuk.org/Forums/faq.php#1 ) The forum is primarily a place for carers to get support from other carers.

Carers UK does however provide a free telephone advice service for carers on 0808 808 7777.

We do try with the forum to answer posts as and when we can and I'm sorry you didn't get a response to the post sooner but I'm afraid when you say "CUK" hasn't replied to your post, the reality is it's either me, Gavin or Christine and looking at the forum is only a tiny part of our jobs at Carers UK. Unfortunately that means we don't always get to see it everyday. I do know that is frustrating and I wish it were otherwise.

Our fundraising staff are always exploring ideas of how we might get money to expand the online support we can offer carers, but until that happens there are limits to what help we can offer via the forum and how quickly we can reply to posts. However as I have said we do have a helpline, details are below.

CarersLine 0808 808 7777 is open Wednesday and Thursday 10am-12pm and 2pm-4pm.

All the best
Matt Hill
Communications and Campaigns manager.
Carers UK
Hi Tinker,

First of all welcome to the forum and I hope somehow that we can find a way to help you.
Accept my apologies if this posting seems mixed up but you have so many issues to cover.

You said
the s.s. told caree that as she was over 18 she shouldnt be living at home and should be in supported accomodation
How on earth a professional can come out with such rubbish is beyond me.Does that mean they would expect every disabled pensioner to go in to a home and not live with their families.
Your daughter has a right to remain at home with you if those are the wishes of you both.
The fact that she has decided this and does not want to accept help from Soc Services after her own assessment,like you said has to be respected.

However,have you tried to get help in your own right.When your carers assessment was done were you not offered any assistance for yourself to cope with your caring role.After all,when a care plan is being discussed it should include support and services to make things easier for you in caring for your daughter.

I dont know the area where you are from but I know of several cases here where carers get help with domestic stuff.It does not give them a break from their caring role as such but it does lighten it a little.Maybe this is something you could consider.In time your daughter may get acquainted with them enough to think again about getting some help of her own.

Have you ever thought of a befriending service.This could be gradual where you yourself was still present but slowly made excuses to nip somewhere for 10-15 mins then build on that till it gets longer.

I dont know if I am right with this next bit so please forgive me if I am wrong but it reads like your daughter has no trust in strangers..is that right?If so, everything will have to be taking so slowly but it is like Charles said its something you all need prepare for.

Its hard just with typed words for us all to understand what you are going through and to advise but I hope you will keep posting.
There may be others out there who can advise more but I hope you will use us to offload any worries.

Circumstances amongst carers differ so much but the emotions are sometimes very similar.

When I get more time later I will pm you a few links.It may be info you are already aware of.If so just ignore.

Be strong,
Rosemary
Matt, thanks for the standard reply.
Rosemary, thank you for your reply and concern.
Where we live there isnt a befriending service, 'I' would be grateful for it if there was, but caree only says she doesnt see why she should have to 'pay' for a friend.
There is a lot of help and services available to my caree if she would agree to them. But she is scared of accepting it .( Once bitten, twice shy. She just wants to be a recluse with me on call . Because she feels safe. My gp cant intervene because of her rights. And, lack of my rights, carers care by choice!)
My carers assesment said they could only offer me respite, which meant forced care for caree which she and I wouldnt agree to. The SW walked out of the house. Case closed.
As for help with household tasks, that means paying for it.
I have to go out cleaning in the evening when hub comes home to suppliment the measly carers allowance, therefore I cannot possibly afford the contributions to it. We get no benefits.
Yes, she has lost trust in people.
As for me, I would welcome all the help available for her,but I have to respect her wishes.
If a caree wont accept services then the carer doesnt get any. If a caree wont allow anyone in to take over the caring, then where do we stand?
We spent all our savings on private appointments, therapy etc in the early days, but , until caree decides to accept help , we have to stay as we are.
No point in asking what cuk is doing about this issue, this is just a support site for carers to support other carers.
So Matt says.
Thank you Rosemary and Charles, and all my best wishes to you and every other carer .
love tinker.
ps, I would be grateful for those links Rosemary when you can get time to post them.
No point in asking what cuk is doing about this issue, this is just a support site for carers to support other carers.
So Matt says.
Hi tinker,

As I said this forum is a place for carers to support other carers. However Carers UK is a lot more than just a forum and a website. It is a membership organisation, with thouisands of members a local branch structure and we offer support and advice for carers and we are campaigning for a better deal.

I know you are unhappy with my reply but it was sincere, I can't advice you on the forum, but if you will call Carers UK's free advice line we will be happy to help.

Regarding the wider issue of what happens if the person you care for refuses services, it is of course a very difficult situation, you cannot force services on someone. However your council does have the power under the 1995 Carers (Recognition and Services) Act to provide services directly to the carer. This is something that was directly campaigned for and won by Carers UK.

What sort of help could it be? Well feasibly it can be anything that would support you as a carer, but is not intrusive to the person you care for. It's a difficult area, but the sort of things that other carers have had, have been things like gardening, domestic help, laundry - practical things that free up time for the carer but are not personally intruding against the wishes of the person being cared for.

It's not ideal and sadly not all councils have embraced it, but it may be an option. CarersLine will be able to explain it more fully.

all the best

Matt
Where do u go to get help for things like domestic chores...as I am back and forth at my dads doing his housework which isnt a bother really, but the gardening front I was promised by local council that I would be elegible for the gardening scheme as I had a lot on my plate so to speak......then got told I had to do it myself......got someone in to cut down my bushes brambles etc garden was getting way out of control, but I have a large rowan tree in my garden which the council said they would chop down for me, got a phone call this morning saying it was up to me ...again......I even told them it was interfering with my and other neighbours phone wire.....Dumfries council and there council workers are a waste of time and money.....Lesley.....Im not waiting on replys just writing my anger out on page grrrrrrrrrr Image