How things are for carers

It’s 17 years now since my about-to-be 8 year old daughter dropped like a stone as I baked her birthday cake and suddenly – just like that – I became a fulltime family carer, with no control over my life, my career or my working hours.

Like most carers, I started out bewildered, unrecognising, waiting for things to return to ‘normal.’  When – years later – it finally dawned on me it wouldn’t, I looked around for  help  instead.  And discovered nothing but a patchwork of  ill-conceived ‘initiatives‘ to offer us sympathy and aromatherapy and keep us firmly in our corner. Carers are not paid, are not supported, are not represented. The Working Time Directive has forgotten about us.  Have a pat on the head instead, why dontcha?

Have you ever been on duty – responsible for someone’s life –  168 hours a week, week in, week out?  It is quite as dreadful as it sounds. You have have difficulty with everything: working, sleeping, socialising, existing. And, no, you don’t get used to it. Many – most – carers struggle with difficult daily conflicts between work and care, and an estimated one million have had to give up work or reduce their hours and lose much needed income. (And often a lot of freedom, companionship and self-esteem in the bargain). As money worries cause stress, its hardly surprising  that a lot of carers are also suffering from anxiety and depression because of finances.

And this level of stress and work  often carries on year after year because carers are so tired they have no energy left to fight or even call for help. You out there – you can talk about sweatshops and slave labour, you are angered about unpaid interns, you sign petitions and boycott companies to improve third world working conditions – and yet how many of you in this country  ever notice the army of unpaid unrecognised workers on their doorstep?

Until – periodically – a poor soul at the end of their tether takes some dreadful drastic step and jumps.

So over the last 17 years, I have become  pretty angry on behalf of myself, and all the hundreds of thousands of people like me.  In a world where half the politicians maintain that if you pay peanuts you get monkeys  and the other half  want a fair day’s pay for a  fair days’s work – but only for certain workers – we family carers have been stuck between a rock and a hard place.

To make this worse we  are not seen as people in our own right. Carers are defined by the condition of the person we care for. Carers for dementia, for autism,  for tetraplegia, Parkinsons, epilepsy, stroke, etc etc. There is no grouping to hold us together, and yet it is the people we care for who are different.  Our problems are all too sadly the same.

Loss of life, of income, of individuality. O it’s a huge price to pay for love. Yet we don’t expect to be thought of as noble: we do it because we care and there are no other options . But it isn’t surprising that we would rather be thought of as the workers we are rather than the saints we are not.

It is time for this to change. Will you help me?


I agree with your opinions entirely. Carers have been left in the dark ages where the social support was provided by your family or charity (the church mainly). The problem is that the family was extended, so the job could be shared out. Now days, with a nuclear family, the weight of caring falls almost entirely on one person’s shoulders.

The idea of state support , which never got very far, has been being trimmed down and down because “we can’t afford it”. Well, maybe we could afford it if all the carers were freed up to have lives and jobs that generate wealth. Then you would be able to tax them and more jobs would be generated because of the need for professional carers.

The other way to gain finance for carers (not to mention better education, better housing …) is to actually tax people at the level required to support the standard of living required by the people. This idea encounters much resistance from politicians, seeing it a being a very tricky sell to the public. But there are now a reasonable number of counties that provide an example of how this improves the overall standard of living: Sweden, the Netherlands, Denmark, Canada).

Let’s go for it! Let’s treat everyone fairly. Let’s provide decent state support for our carers and let those who have the means to, pay for it. Soo Thomas

I care for my husband 24/7 and I do not get carers allowance as I am meant to be getting enough as I am on ESA. This doesn’t cover the hours that I look after my husband, I know that as his wife it is my job is to ensure that I take care off him, but I have to take everything on, has he has PTSD, combat stress, also bowel cancer, just had another heart attack, there is no one to take my place and look after him, I have my own health issues but I put these on the back burner to take care off my husband. Elizabeth Haigh

Unfortunately this all sounds so familiar with my experience of being full time carer for my mum with schizophrenia and dementia. Its just an up hill struggle from day one! Lack of help, lack of advice, living on or below the poverty line, who cares about the carer? Jane Mounsor-Shaw

Time for change! David Baldawi


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