Are you one of the 6.5 million carers in the UK?

Former_MSE_Wendy

A massive one in every eight adults care for a family member, friend or partner, often giving up their own health and wealth in the process.

If this is, or could be you, find out about the advice and support available at one of the events organised by a range of charities during Carers Week.

Find out more on the Carers Week website and share your stories below...

Click reply to have your say

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Former_MSE_Andrea

DomRavioli

I don't have time to go to an "event" - I'm busy caring for 4 members of my family. There is no option for respite to attend events, and social services are so underfunded that if I don't do it, they end up in hospital taking vital resources.

Prinzessilein

My OAP mother is my carer.....unpaid, she is not entitled to Carers Allowance.


Without her love, help and care I quite simply wouldn't be here today. (And melodramatic as it sounds, I can't see myself surviving long after she eventually goes....I try hard not to think about it , especially as she is in her late 80s already!)


She is registered partially sighted, uses a walker to get about, is hard-of-hearing, has arthritis in just about every joint...............and still manages to save the government thousands of pounds by looking after me.


She will be unable to attend any events - her days are spent looking after her own hone and caring for me. Nothing I can say or do will ever repay her for giving up a large part of her life to look after me.


There is a local 'family carer' group - they phone Mum once in a while to see if she is doing okay...but there is little practical help they can offer. Some organizations locally offer discounts to family-carers but they tend to be things that Mum can't access....spas/beauty treatments at places too far away (neither of us drive)....discounts at restaurants at the other end of the county....that sort of thing.


I really think more needs to be done for the totally amazing bunch of people who are family carers.

System

It doesn't matter about big events the truth is that carers are in a lot of cases [certainly in mine] left to get on with it with very little support.
My dd when she is 18 can be referred to the Adult disability team and while I can hope there will be some form of support I suspect its going to be as much as we are getting now !

Former_MSE_Wendy

Thanks for your posts guys.

Sorry you don't get chance to go to carers events. Were any of the other links on the carers week website useful?

This page has some advice and support options. http://www.carersweek.org/about-carers/advice-support

DomRavioli

MSE_Wendy wrote: »

Thanks for your posts guys.

Sorry you don't get chance to go to carers events. Were any of the other links on the carers week website useful?

This page has some advice and support options. http://www.carersweek.org/about-carers/advice-support

Unfortunately not - most carers aren't entitled to any help (I work, go to uni and care, so I get no help whatsoever) financially, unless they give up work completely and leave themselves vulnerable.

There's not much in my area in terms of carer's resources and help, and I cannot travel 15 miles to another city/town as I have literally no time to do it. The only times I get on here is when I'm at work!

Iheart

While I like the idea of the events, the nature of being a carer must mean that many people cannot possibly go.

I am SE but can only work when my son is at school and the rest of my time is taken up caring for him. A respite is not available in our area (we qualify but there isn't the space) and we have no family support its very difficult to go anywhere!

I do like the idea though, and wish the idea that carers save the economy so much was more widely knows, stop the ignoramuses who think carers live the high life, sponging off others.

SandraScarlett

I had an operation on my leg 2 weeks ago, and Social Services arranged for my husband, who has severe Alzheimer's, COPD, Idiopathic Pulmonary Fibrosis, Multiple Systems Atrophy, is incontinent and had a heart attack 9 months ago, to have respite at a Care Home for 4 weeks, until I could look after him again.


I had to phone the hospital, repeatedly, to get an op date, and they weren't at all concerned that I needed a date so that I could arrange respite. Then SS, who had told me they would find a CH, if I couldn't, gave me the names of 5 homes, that had spaces and would suit DH's needs. No phone numbers, or addresses, just names.


Three didn't have any spaces, the fourth could only take someone who was bedbound, not a wanderer, and the fifth was unobtainable. So I took the CH Directory for our area, and the fourth place that started with "A", had a vacancy.


It's been suggested by my family, who have seen me worn out, that I consider long term care. SS resources are spread so thinly, that you have to do all the legwork yourself, in between looking after the person, and though they say they're happy to help, nobody phones you back, and you end up being frustrated.


When DH had an appointment 3 weeks ago at our hospital, with a consultant, about his chest problems (similar to Asbestosis), there were posters showing the butterfly symbol, for Dementia, and a statement that anyone with Dementia, or accompanying someone with Dementia, should make the nursing staff aware, so as to make the visit as stress free as possible.


This I did, and even though DH started crying after 20 minutes, and I kept asking the nursing staff when he'd be seen, always to be told "he's next", after nearly an hour an a half, with him sobbing, I took him home.


He was sent a new appointment for 5 months time! I phoned the consultants secretary, and after explaining everything, and saying it was as if he were being punished cos he has Alzheimer's, she eventually made an appointment for next month.l But everything is a battle, and a carers time is spent looking after and fighting for their loved ones.


The butterfly symbol is about as helpful as a load of people singing "I'll get by with little help from my friends", and is just paying lip service to the problem.


So I too won't be going to any events. Perhaps if they organised a buffet lunch, where the person you cared for could be supervised and cared for, in another room, so that the carer could discuss their problems on their own, I might go, but this is as likely as flying pigs.


xx

Terrysdelight

SandraScarlett

You have really summed things up well. I can relate so much to what you have said. And you are so right, all this 'we care lark, is just lip service'.

SandraScarlett

MSE_Wendy wrote: »

Thanks for your posts guys.

Sorry you don't get chance to go to carers events. Were any of the other links on the carers week website useful?

This page has some advice and support options. http://www.carersweek.org/about-carers/advice-support

I belong to every website that I can find, that offers advice, help and support for Carers. To put it in a nutshell, the biggest problem isn't lack of money, it's lack of co-ordination, and not just the left hand not knowing what the right hand is doing, but the left hand not being aware of what it's doing!


I am fed up to the back teeth with people saying "I'll call you straight back", and when you call them again, 3 days later, you don't even get an apology. Being a carer is hard enough, but having umpteen frustrating conversations, with so-called "professionals", who may well have been trained to talk, but haven't perfected the art of listening, grinds you down.


My DH is currently in respite. I am in receipt of Direct Payments, and the Financial Department of my LA, decided how much DH should pay towards his clubs and personal care (bathing and dressing etc) - let's say that his care package is £250 a week, and he has to pay £150 towards this.


When respite was decided, the care package was withdrawn, and in its place, the cost of 4 weeks respite was approved, and the money paid into the Direct Payments account. I intended to carry on paying £150 a week.


One evening I decided to fascinate myself by reading the 116 page CRAG report (which sets out how much a person must pay towards permanent care), as well as my LA's guidance for both temporary and permanent care, an equally fascinating 34 page document.


Imagine my surprise to find that if someone is over Women's Pension Age, they should pay no more than £110 per week, during respite! Did anyone from Finance advise me of this? No. I telephoned to check and said that "a friend" had told me this but I doubted it, as I hadn't been told of this by Finance.


Call me an eternal optimist, but I honestly thought that I'd get an apology that a letter detailing the new amount, during respite, hadn't been sent. Did I heck! The person on the end of the phone just said "Yeah, that's right. OK?" and left it at that!


I belong to an Alzheimer's Forum, for people who have a partner with Alzheimer's, and the posts, expressing frustration, would make you weep. I'm not exaggerating, last night a guy was threatening to end it all, because he'd reached the end of his tether, and couldn't get through to the professionals, how desperate he was.


I had no idea how hard a carer's life is, until I became one, and I don't expect the general population, en masse, to be any more informed than I was. But I do expect the professionals, who are paid for by ourselves, to have some understanding.


Sorry, I didn't mean to go on for so long, but, judging by the people who've thanked my other post, I know I'm echoing the thoughts of many. As a retired Business Studies teacher, I was able to help Martin with advice and info needed when he was preparing his Bill for Parliament, to make Financial Education compulsory in schools.


Anything I can do to make the lives of carers easier, and their voices heard, I will. They are the unsung heroes and heroines, who deserve more help than they're currently receiving. Don't they?


xx