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Despair in Care - Carers UK Forum

Despair in Care

Tell us a bit about yourself here.
I have been a Carer at home three times in my life, even while being in Management or running Companies. However since 1978 have been called upon to submit to care for loved ones, whilst doubling as an Executive. Try it sometime.
1/ The first happened Through Acute Post Natal Depression
2/ Then another suffered Preclampsia,then Eclampsia causing the death to a young mum Mandy Bayliffe. Please read her story at www.carersassociation.info
3/ Finally another suffered a Stroke leading to Acute Anxiety Disorder and disability.
I myself suffered a Stroke in 2010 followed by several Tia’s, MS, Diabetes etc ,etc.
Currently caring for my sick wife since her Stroke. There is no help out there if you have worked, run a business etc all or most of your life, yet cannot claim Carers Allowance , because I receive a State Pension, which by the way I paid for. We do not need patronising,just a fair hearing and support.
What if we went in Strike, can you imagine the chaos ?
In desperation set up NATIONAL UNION of CARERS ( NUC ) www.nuc.org.uk to fight for justice, as nobody will help me or Carers at home. Home Care has vanished only to be replaced by Private Agencies who charge around £20 per hour for this service. Bearing in mind most do not have that sort of disposable income left. Join me in the fight for justice and to be honest if you are put in a situation of Caring ,tell your Doctor to sort it out and go back to work, or just chill out. I may seem harsh but remember it is your life too and the better you feel the more friendly support you can offer to loved ones, once refressed.
Hi Terence ... welcome to the canteen ... others will be along shortly to extend their welcomes.

Mandy's Campaign / NUC ?

Known and featured by us back in April :

https://www.carersuk.org/forum/support- ... ilit=mandy


https://www.carersuk.org/forum/news-and ... tion-32802

I trust you'll find our postings of interest as you embark apon the ventures.

Perhaps you'll use the existing NUC thread to update us all on progress ?

Some of us have been campaigning / posting on various carer related sites for close on 15 years ... some , like me , go back more than 20 years ... when the first ones sprang into life ... the best early one was run by the Princess Royal Trust ... now known as The Carers Trust.

That forum , together with it's most precious archives , disappeared in the past year ... in line with their " New " policy.

As for injustices , look no further than our Lord Kitch :

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

As for ourselves , some history ... it wasn't as always as docile in CarerLand ( A nationwide gulag for family carers ) as it is now :

https://www.carersuk.org/forum/news-and ... hilit=2009

Feel free to bounce anything off us on this forum ... there is a wealth of experience amongst the motley crew.
Terence_18071 wrote:
Thu Jul 19, 2018 11:29 am

What if we went in Strike, can you imagine the chaos ?
Not for anyone that's likely to provide help with the overall situation, whereas if I were to go on strike my wife would be hungry, unwashed and bed-bound for three days of every week and I'd be living amongst faeces and urine.
I am sorry to frighten you at the thought of a total meltdown,though what if we did ,the chaos and mayhem that would follow. It is neither your Wife’s or your fault this awfull situation has been landed on you.
So Care ,Support and respite to be provided free of Charge for all whom care at home to start with?
Surely if we don’t fight for our corner, we’ll be dead before they are. Then what, have your loved ones stuck in maybe a 1* Care Home, crying themselves to sleep after loosing their loved ones , lett with strangers often offering minimal support on the budget.
Please go to the web site www.nuc.org.uk , read about our fight, even join as a member and or sign the Petition.
My late wife Mandy was 24 years old ,when somebody missed her dangerous condition, during pregnancy,leaving her terminally ill and where i gave up my Career to be with her 24/7 until she died aged just 29. Please go to www.carersassociation.info and maybe download her true story “ Shattered Dreams “ by Mandy Bayliffe ,free of charge.
I do hope your lives get better, though if we leave things too long it may be too late for all of us.
Terence
I have just signed the petition.
My circumstances are different to yours. I've been married for 50years. It's a long goodbye to my lovely husband because of strokes and vascular dementia. Painful. However, although I do not feel ' lucky' I realise that 50, mostly happy years are to be treasured.
Welcome from another crew member. I just wanted to add that as a British citizen who lived abroad for 30+ years and came back to look after mum and advocate for her, that I would need to wait two years before I would qualify for the pittance that is carers allowance! She was dead within 13 months!
I am more and more hearing about the Plight of Carers and the destruction it creates ,when the Caring Stops. What if they have a mortgage or renting a private home ,then the real trouble starts, threats with eviction as the allowances are reduced ,even stopped and or clawed back.
So after many years of one to one Caring, you can be left penniless,mentally and Physically destroyed, whilst facing an often impoverished life ahead.
Who cares then because you tick no boxes with them, just expendable after saving the State many ,many thousands of pounds.
Yet nobody Cares for you, do they ? Forget about the patronising, real physical and financial help are the only real ingredients,so good luck waiting for that.
So please join the NUC at www.nuc.org.uk ,so we can fight for our right to be heard and counted.
Having been a Carer at home three times, parking my Career each time and for what, as nobody cares except you.
You are just a number in the scheme of things, so when your loved one passes on and where there is nothing left for you to hold on to , just remember you are probably next.
So stand up and vote for You.
Email : info@nuc.org.uk
Terry
Chris From The Gulag wrote:
Thu Jul 19, 2018 11:43 am
Hi Terence ... welcome to the canteen ... others will be along shortly to extend their welcomes.

Mandy's Campaign / NUC ?

Known and featured by us back in April :

https://www.carersuk.org/forum/support- ... ilit=mandy


https://www.carersuk.org/forum/news-and ... tion-32802

I trust you'll find our postings of interest as you embark apon the ventures.

Perhaps you'll use the existing NUC thread to update us all on progress ?

Some of us have been campaigning / posting on various carer related sites for close on 15 years ... some , like me , go back more than 20 years ... when the first ones sprang into life ... the best early one was run by the Princess Royal Trust ... now known as The Carers Trust.

That forum , together with it's most precious archives , disappeared in the past year ... in line with their " New " policy.

As for injustices , look no further than our Lord Kitch :

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

As for ourselves , some history ... it wasn't as always as docile in CarerLand ( A nationwide gulag for family carers ) as it is now :

https://www.carersuk.org/forum/news-and ... hilit=2009

Feel free to bounce anything off us on this forum ... there is a wealth of experience amongst the motley crew.
Our Lord Kitch speaks for us all , Terry.

https://www.carersuk.org/forum/news-and ... read-27982


Trouble is , NOBODY outside of CarerLand will lift even a finger to help in easing our Plight.

Only family carers collectively can do that.

Good fortune with the NUC venture ... the latest in a long line dating back almost 20 years.
The only way to get action and make the Government listen ,so as to provide Carers allowance for all adults who care at home, free from any income assessments too !
The Government includes a Stamp as part of the Caring payment structure. So then how come we are not entitled to at least a minimum wage ?
As a three times Carer, which was forced on me, started the NATIONAL UNION of CARERS (NUC) to make all that happen and more. My late wife Mandy ,25/05/65 - 28/08/94, tried very hard in her short life to encourage these changes. Although she made some dents in their armour, that is locally, died before she achieve more. I remarried ,though later suffered a Stroke, MS, Diabetes, Damaged Spine to name a few. Mandy’s Charity The Bay Foundation has done it’s best to highlight, advise and support families who care, providing many holiday grants to give them a break.
However moving forward, please go to www.nuc.org.uk as a Carer or not and join free of charge.
Once we have enough members can challenge the Government to make challenges.
NUC needs volunteers to build an army of supporters around the UK , so register your area .
It also needs help to administrate our quest. By the way NUC is a not for profit company and where there are no paid staff.
So please join the army of Carers and award us to finally get our rights put in Statute and right many of the wrongs inflicted on us.
Terry