Mythical 24/7 Carers?

[cheryl]

Started this thread so as not to take the Carers under threat thread off topic.

Excalibur wrote in the Carers under threat. thread

Caring full time is - IMHO - almost always inferior and worse quality care to sharing the care with family and paid carers on a fair basis. We wouldn't want to see a doctor who was working 24/7, so equally, nobody should be caring more than 40 hours a week. Its time to put an end to the myth of the hero 24/7 carer, once and for all. Because this argument isnt really about promoting quality care, is it? It is really about envy.

I agree with you nobody should have to be in a position whereby they are forced to care for more hours than they feel able to cope with. But the reality for many is that they feel that they do have to continue in their caring role because adequate appropriate replacement care isn't available, they have to continue because the health and well being of the person they are caring for would be compromised, maybe even their life endangered if they didn't.

Whilst it's true that people don't actually spend 24 hours per day actually providing hands on care, it is a fact Ecalibur, not a myth, that some people do arrange their lives 24 hours per day around providing, or being available to provide care for someone else. That is why they rightly (imo) perceive themselves as 24/7 carers. How else could they perceive themselves?
In what other way could they describe their daily lives?

[douglas spooner]

thats the problem cheryl people who are lucky enough to go out to work either full time or part time do not have a clue about 24/7 caring and everyones situation is totaly different
mine is noreen can not be left alone for starters its not safe for her being on her own she cannot change her catheter herself or her stoma bag she cannot empty her stoma bag when its full which would require her (to stand up) which she cannot do being in a wheel chair or her catheter when she is tired she cannot get in to bed herself or dress herself and when she soils herself whoes going to clean her she cannot make meals by herself she has no strength to lift a cup never mind a pot of boiling water etc she is almost always in constant pain and her consentration is all over the place but occasionally yes i find a little time for myself to have me time is that wrong? if i didnt i would be in a pine box or close to it i have no family who gives a damn so i have no help there we cant get help because of cut backs coming so im left to my own devices and just get on with it iv'e tried getting help once never again which i wont go in to so yes i agree to a certain extent about 24/7 care probably most of us have to be there incase something happens and then theres night time when your lucky to get a full 8 hours sleep so we do need a little time to ourselves but always in ear shot just in case

[marie66]

Hi, 24/7 Carers it shouldn't be that way but they do very much exist!

My own situation, some will know, is fairly complex:

My husband has poorly controlled drug resistant Epilepsy. It's NFLE - Nocturnal Frontal lobe E. which really means, he has seizures all during sleep.
Now, from that you'd think it's just a night-time condition wouldn't you?

Well, while night time is our busiest, with seizures every 20-30 minutes constantly, because he's totally knacked the rest of the time due to all the seizures banging him about, he's also very sleep deprived so falls asleep on and off most of all day.

During his worst period, he had 30 seizures a day for a six month period and that's day and night!
At his best? he has between 10 & 15 a day.

We have had a Care Package in place for the last 3 years and it's generous by some local authorities standards - 28 hours per week:
The SS accept he needs around the clock care and the package is to let me sleep for 2 nights and 8 hours day care a week, to cover a work session and a few hours out with my mum.

So apart from those precious 28 hours help, it's very much 24/7 care with snatched sleep the rest of the week!

I'd say there are many full-time Carers out there who are in very many differing care situations but are very much caring around the clock.

Marie x

[g.herschel]

I`ve often said you dont have to "feed em & wipe em" all day long to be classed as a 24/7 carer , i am lucky at the moment as most of my care work through the night is mainly to help the old doll in and out of the bathroom sometimes as many as 5 times per night ,, STAN also had a problem with night time visits to the bathroom and i was able to help him , but when he was in respite care ( thank god only for a few weeks ) he was placed in a nappy by the care home staff, who were far to busy sleeping down stairs then wroking for their caree`s up stairs...i have said it before if we could get good quality care either at home or within residential social care no problem ,,, 24/7 carers do exist some work very hard indeed some like me at the moment have a fairly "easy" life , it`s just time consuming at the moment , asthma attacks are frightening believe you me ...
we are not hero`s and never ever claim to be so ,we are people who have accepted our responsibilities and done what we see as the right thing, give good quality care to an elderly parent at home, because the state / local authority either cant or wont provide it . just who are we envious of ?
those who get help from their families .. no way
working carers who can both work and care.. no way
part time workers who also work and care ..no way

the care that we as familiess provide is far superior then any care offered by the private sector or local authority ..we give the caree , respect , dignity & compassion over the last 16 years i have seen very little of that from care homes or care workers , sure we do have some good homes or care workers but they are few and far between ..

one thing that annoyed me was during the old dolls recent M.O.D. medical it was stated that she does need 24/7 care ,and should not be left on her own as she can not cope , and at the moment this care is provided by her son who is her full time carer 24/7 (looks like the M.O.D. believe the 24/7 carer exist ), yet no mention of funding to pay for this 24/7 care ,we do know the answer ,, pay for all your own care ....

[MaryB]

Well I don't want to go out to work and leave the care of my sons to care workers so definitely not envy
I agree it's about quality of care and can confidently say that I give the best quality of care despite the 24/7 load, but I also believe I should be given more than the current rate of CA, just as working carers believe they should be paid unless they are doing voluntary work of course.
The nearest I come to envy would be sorrow, sorrow when I see my neighbours children able to do everything my children particularly youngest, never will, but it isn't the same as envy because I do no begrudge them their good fortune in being of sound mind and body, but I would be a strange sort altogether if I didn't feel the emotional pain.
Vicky

[Matt Hill]

Its time to put an end to the myth of the hero 24/7 carer, once and for all.

I read Excaliburs comment to mean that 24/7 caring being "heroic" was a myth. Not that 24/7 caring itself was a myth. Seems we all read things differently! According to the census 1.25 million people in the UK provide over 50 hours a week. 24/7 round the clock is very much a reality for many families. Here's why -

- Many people are unable to access the support they need and are effectively abandoned by the system.
- In other cases, formative bad experiences scare people off from services and so many carers will feel they are irreplaceable as they do not trust the alternative.
- In some cases the people they care for may refuse any outside help or even manipulate feelings and situations to keep family members as sole carers.

It is a complicated situation but the bottom line is that 24/7 caring is not desirable and at Carers UK we want to campaign so that carers have a real choice. There is a wealth of evidence to show that the longer you care the more likely you are to live in poverty and suffer poor physical and mental health.

It's possible there may be a small minority who have their own reasons and want to care solo for 24/7 without support - but the majority of carers do it becasue they feel they have no other options but to do it. That is what needs to change.

[Scally]

Thanks Matt , thats exactly what I was trying to say. It simply isnt possible to provide high quality 24 hr care for long periods, so sharing the care is an absolute essential - whether the carer works or not. Some of the carers I meet in the course of my work are in their seventies, eighties even - they cant be expected to cope with heavy caring without their health breaking down, and therefore they need to ration their input and seek help before a crisis arises, not when its too late.

So where carers need help at the heavy end is in starting to think of themselves as care managers, organising and co-ordinating the work of a team of other people, whether family members, neighbours, volunteers or staff. My son requires 24 hr care - well pretty much - yes he is learning to do a great deal for himself now, and growing in independence every week that passes, but even that takes lots of extra help and careful planning. And in the course of a typical week his care is shared between at least a dozen people - his circle of support.

Thats the way forward, not taking on the burden on one carer. And nearly all the parents I know do exactly that - we are used to sharing with others from the early years of attending nursery and school, where we fight for our kids to be included in the mainstream or to get specialist services if required.

[pauljstephens51@hotmail.com]

alot of the time here people just think everyone has family to run around and share the caring. for some there are no family around to help support and share the caring, social services also dont provide support to everyone and that is just going to get worest as there budgets are cut, as a explample. my neighbour has just came out of hosiptal is pretty much on her way out(not be nasty) yet social services offered her 2 hrs per day, her only daughter had no choice but to stop work to care for her mum. yes she could have got private care for the rest of the hours but then that would cost her most of her wages to pay for it.

[Scally]

social services offered her 2 hrs per day, her only daughter had no choice but to stop work to care for her mum. yes she could have got private care for the rest of the hours but then that would cost her most of her wages to pay for it.

Well, that's where carers need to know their rights and argue their case firmly, and that's why this site and the Carers Helpline are such a great resource. Because of course (assuming that she really needs that level of care as you are saying) her Mum is entitled to 24/7 care in her own right in a care home or hospice paid for by the State, (making her own contribition to some elements of that care from her own means-tested income) and the daughter is not obliged to give up work or to pay for private care out of her own pocket. So there are always choices to make, sometimes hard ones, thats true, but nevertheless real choices.

[pauljstephens51@hotmail.com]

i agree however when you break it down some dont want to be pushed into a care home and want to stay in the own home and pass away in the place there have lived for years and why should there. the government keep on about fairness etc well where is it?? yes you can fight for it but how can you when most of your time is taken up caring??