The challenge of caring

Looking after a relative, friend or child who is ill, frail or disabled is a job few of us are prepared for

According to the organisers of National Carers Week (13-19 June), carers are the UK’s secret service, saving the economy an incredible £87 billion by providing unpaid care. Despite this – and the fact that three in five people will be carers at some point in their lives – there is little support and scant recognition of the difficulties they face. These include struggling with finances, health, working and social life, and general well-being.

A survey done last year for the Princess Royal Trust for Carers found that one third of all carers in Britain are so depressed that they don’t want to wake up in the morning. Carers week, which is a partnership of nine national charities: Age UK, Carers UK, Counsel & Care, Crossroads Care, Dementia UK, Macmillan Cancer Support, MS Society, Parkinson’s UK, and The Princess Royal Trust for Carers aims to highlight and to celebrate the very valuable work that carers do and to campaign for a greater recognition and support for them.

* For details of events and how to get involved call the Carers Week hotline 0845 241 2582 or e-mail: carersweek@carersuk.org


“Seven years on, it’s still an uphill struggle”

Caroline Wilkes has been caring for her son Jacob, who has an extremely rare genetic condition, for seven years. When we featured her story in July 2009, it brought in a huge postbag, so we asked Caroline to share what life is like now and to help us understand the challenges that carers face

My son Jacob is in a wheelchair and fed through a tube into his stomach 24 hours a day. He spends much of his life in and out of hospital, at a special school and in our local children's hospice.

I have been his carer for seven years and you might think that would be more than long enough to have learned all the ropes, take the job in my stride and have moved into a phase of doing the job with greater ease. But it’s not quite like that.

To be fair, the 'job' of carer leaves quite a lot to be desired. Even with the pressures of the current job market, it would take a very brave individual to choose the role. The job description is infinite and changes without any warning; the pay is terrible (nowhere near the minimum wage); the holidays are virtually non-existent; the stresses in the work environment are extremely high; you are seldom told that you are doing a good job; and you always have to take the work home with you.

Most of us never chose the role of carer - we've found ourselves thrown headlong into it with no previous training or experience. It takes most of our emotional and physical energy to care on a day in, day out basis.

So, seven years in (and who knows how many more years to go ...) I'm still finding it an uphill struggle, full of profound disappointments and difficult challenges. There are some things I wish I had learned earlier,  and some things that I have to remind myself about even now, when life is particularly tough with Jacob.

I wish I'd known . . .
+ That sometimes days and days will go past where my only role is as a personal assistant for my disabled son: filling in forms, applying for pieces of equipment, juggling appointments, attending reviews (it really is a full time job).
+ That I shouldn't be over sensitive when friends who work look at my life as a carer and imagine it to be one long holiday of coffee with friends and time to go shopping.
+ That somedays I will only ever get letters or phone calls, or be addressed at appointments as “Jacob's mum”. and forget that I even have another name.
+ That there is a remarkable (almost unbelievable) richness in seeing tiny steps forward in my disabled child's life which brings profound beauty into an often dark world.
+ That every single aspect of life from going to the park to making a phone call; from planning a holiday to a meal at a friend's house; from going to the toilet to drinking a cup of tea will be riddled with complications, unpredictability and constant change.
+ That booking anything in the diary, even just one day in advance, should always be written in pencil with a very large question mark as “sorry, I can't make it” becomes the phrase most often on your lips.
+ That some friends will find the unpredictability and neediness of your lives too much and will slowly fade into the distance, while the depth of new friendships brings hope and joy.
+ That some days (and weeks ... and occasionally months) will be extremely lonely.
+ That your life is totally different from anything you could ever have imagined.
+ That you never stop having to adjust to the demands of being a carer. It doesn't  become 'easier' the longer you do it.
+ That you stop conversations at social events following the inevitable question, “and what do you do?” And that your self-esteem takes a mighty whack with loss of career, earning potential, social standing and people being interested in what you do.
+ That you have to fight (and fight hard even when you are tired of fighting) for every single bit of support, equipment and care provision to help you look after your disabled child (or adult).

Yet even so, hand fully on heart, writing this has made me realise that despite the demands and strains, I truly wouldn't want swap places. I am not saying it lightly (and many tears have been shed and will be shed on the journey of being a carer), but in the midst of all of that, there is a richness to life that I never realised existed.

The reward and the recognition for being a carer might be thin on the ground in human terms, but the opportunity to connect with others' lives at the most profound level, to share the journey with others in similar situations, the ability to recognise the threads of light on the greyest of days and the reality of God being with us in the mess and brokeness of life is a precious gift of infinite worth.

Caring is definitely not the 'job' I would have chosen, but now I am here I am very (very) slowly learning that there are moments to treasure that somehow make me come back to clock on yet again the next morning.

Read more insights from other carers inside the June issue