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Despair in Care - Page 2 - Carers UK Forum

Despair in Care

Tell us a bit about yourself here.
FAO Chris and all others who care enough to make the State listen and change our lives for the better.
I am fully prepared to provide my contact numbers ,so together we can create an Army of Activists for real change.
I am 70 years of age this year and first became a Carer in 1977 following the meltdown of my wife then.
Her whole persona changed along with challenging behaviour patterns.
Six years later had had enough, got divorced and married the children’s Nanny in 1988.
She truly was a dear, but during her pregnancy and the expected birth of our son ,suffered heart failure and a collapse to some organs, I was forced to give up my career and take care of her 24/7 ,along with the three children too.
She hung on for five years, dying in my arms in 28/08/94 aged just 29.
I met my current wife at the local Cemetery and whom provided great love and support to all of us.
In 2010 I suffered a Stroke, MS, Bells Palsy, Shingles and Diabetes. We received no help at all.
Once recovered enough carried on running the family business.Things were going well again and with no help from the State eitger . In April 2015 my wife suffered a Stroke too leaving her with lots of issues including Acute Anxiety Disorder. She requires monitoring 24/7 , cannot cook ,clean or be left alone.
So our family business got BINNED again and three years later I am her rock.
The State offers no help and even have to employ a Housekeeper to do the housework and things.
In 2016 I had my Mobility Car taken away but after months of appealling got my allowamce back.
So not looking for Pity ,but just to accept why I am doing this.
Please go to www.nuc.org.uk and join because if we don’t stop this disgusting injustice, we and those that follow will remain Cannon Fodder.
There now ,you know almost as much about me as I do.
Terry Bayliffe
I can't agree with your strategy Terry. Not in my case anyway.

I have become drain on State since it decided to prosecute me for losing the rag despite no physical violence being enacted. Cause same as you're reason for divorce of your first wife, Result was divorce. In those circumstances no way was going try keep 'bus on road' try keep going with old 'regular' life and so decided continue being 'full-time' 'carer' and cease full-time employment for good.

So now:
1) Claim carers allowance even tho it's debatable whether provide 35 hours care.
2) Claim ESA to top up my carers allowance, in similar vein on eligibility as above. Last year even managed get two benefits concurrently for number weeks despite declaring both repeatedly.
3) Make sure any paid work undertaken is sufficiently limited that I stay on benefits. Thereby wasting the expensive uni education State contributed heavily to. My doc thinks should be 'moving on' i.e. doing far more terms work but - have said him either I work full-time OR I care. It's a simple choice. Couldn't care less that he not in agreement as long as he keeps filling in my fit notes that my 16 hrs a month job all am capable of. Least I work rather most of his catchment area.
4) In term of 'caring' only what I can bothered with at any given time in caring. Which tends be just basics of food and heating, chores and 'PA' services. Have stopped assisting paid carers with persuading caree to engage with personal care. 'Not my job' attitude.
5) Insist on having what you could laughably call 'a life' outwith 'caring'. Expect State pick up slack when do so (i.e. go away on frequent respite breaks - so more calls paid for by them for instance.)
6)Now welfare POA in position to be activated use it as stick to pressure State to do more or will place my caree in residential care which will cost them fortune. E.g. Currently threatening to move out.


I feel this type of personal action achieves more than being in a 'militant' carers group. I recognise that other carers are not in position I am (esp if they care for a partner) and that your movement may have something offer them.
I see in your first post you advocate 'dumping' on doc/chillin out so I stand corrected on that point, Terry.
Interesting post , Terence.

Took me back a decade to CarerWatch days ... and the numerous posts / threads at that time.

My own view ?

Whilst I have always maintained that a carer and a caree are a partnership , there is NO way that the " Partnership " can be used to ease the plight of either ... one has to look closely at the position of each within the System.

A conundrum if ever there was one ?

We have all seen , and read of , small groups of less abled citizens protest against various issues.

Have we EVER seen the same for small groups of family carers ... in isolation of their carees ?

Family carers are enslaved by the System ... to their carees.

Only by breaking that chain ... stop caring / refusing to care ... will the System sit up and take note.

That ain't gonna happen anyime soon.

Family carers have ONLY one weapon ... which will never be used ... on mass.

Apart from drawing together various ideas and alternatives for family carers to contemplate ... the very essence of CarerWatch , continued by me in the present day ... there is very little than can be done IF family carers remain apathetic to implementing some of those ideas at local levels ... to set the ball rolling.

Mutual Assistance is the name of the game that best matches the needs of CarerLand ... grass roots , a few acting spontaneously in reaction to what's happening at local level.

Support services withdrawn / unaffordable ?

Why don't local carers setup their own ? ... in small groups ... I did , some 16 years ago ... so simple , so ... unachievable as many family carers don't look outside their own predicament.

Cost ?

Time and a few coppers for tea and biscults ... even a bit of gardening in exchange for another carer providing me with a couple of hours cover.

Family carers don't act ... they react ... to problems and enforced changes ... one of the golden rules in CarerLand.

My own manor , Worksop , being a prime example during the Miners' Strike in the 1980s ... the local commumity under siege from it's own Government ... working together whether they supported the striking miners or not. Individual differences put aside in preference to the survival of the whole community.

The most potent ally for family carers is the words of a judge.

Change can be achieved in many ways ... changing the Law , and the definition of family carers within the System ... is the most powerful.

How that can be done is the million dollar question.

It cannnot be done through the present setup ... our supporting organisations are non combatants.

A class action ?

Fine ... who would be " Elected " to act for 7.8 million citizens out there , and ... on what mandate ?

Organisations / groups are fine ... until someone decides to run them ???

CarerWatch ?

No leaders ... just posters and individuals working together for the greater need ... including some like minded heavyweights at that time ... academics and politicos ... the latter didn't last long under our close scrutiny !

Legacy ?

The Carers Letter ... and the present day equivalent ... our Lord Kitch :

https://www.carersuk.org/forum/news-and ... rd%20kitch

More questions and dead ends than answers ...

Confrontation ... or logical argument ???

One one answer from me.

Welcome to CarerLand ... reason and logic left at the door when entering.
Yes to all who read my article.
However it seems to me that many have already given up and so await their time to be put in a Box and disposed of. When we die and if our sick/ disabled loved ones remain alive , the State will jump in with initial support, then assessing if they can claim all but the first £100000 from your Estate to pay for their care. If they have plenty or none then Residential Care will be close to the top of things to provide by the State.
Only action in mass will force The Government to change direction on their Privatised Care Platform.
When I cared for my now late wife in 1989, received several hours or Home Care, almost free as having given up my Career in London to be with her in Devon. If I had refused she ,aged just 25 then, would have been Institutionalised along with our children going into Care leaving the guilt of that being placed on my shoulders.
However now if one has some disposable income, you have to pay and quite honest the Carer Support Workers I have have encountered are very limited in what they will and can do.
We need to rewrite “ Care in the Community “ to guarantee those at home with far better free support.
I will never give in because Caring Support is not only Vital but our Right, having paid our taxes and Stamp which wss to provide all this support during our lifetime.
Now there are too many people in Britain, all chasing the same end and even more, many on Tax Credits through part time employment, that 18 hours thing.
Join the NUC at www.nuc.org.uk and help stop the rot once and for all.
Terry Bayliffe