Carers Week: Caregiving and Truth Telling

Sick people are grumpy and often angry. Wise Elders can turn bratty and difficult when they feel less able and under threat. I knew that going in. The trick was not to match these moods with more of the same, which, by and large, I avoided.

From Sia's Full Circle blog

Spare A Thought For Carers

A guest post from Sue Vincent

There are over six million unpaid carers in the UK alone. They range from small children to old age, and care quietly for family, friends and neighbours. In 2006 it was estimated that this silent workforce saved the UK economy around £87 billion that would otherwise had to be spent on social and medical care.

The 30th May is a Bank Holiday in England. I, and my fellow carers, will not get a day off, nor get paid extra, or at all, for working.

Carers are often forgotten, hidden, silent and isolated. Children who cannot learn to grow and play with their peers, because they care for their parents and siblings. Skilled and talented people who cannot work or create because their days, and often their nights, are spent caring. There is no time, nor is there energy for a social life. Holidays are rare, if ever. Careers, dreams, hopes and futures are surrendered daily, silently, to meet the needs of love.

As carers, there are 'rights', legislation, policies... and little support except from peer groups. Pride goes out of the window as poverty is enforced in very many cases. There is not a vast package of welfare benefits available to carers, as many people believe. Caring becomes a lifestyle. So does begging.

Carers need to be nurses, secretaries, chambermaids, housekeepers, cleaners, gardeners, taxi drivers, psychologists, counsellors, cooks, personal shopper and PA. Carers are companions, lifelines and advocates. We get no training, we learn through neccessity.

Carers are often exhausted, get little sleep and are expected to carry on. We are human, we get lonely, frustrated, irritated.. then feel incredibly guilty because our problems are so much less than those of the person for whom we care.

Carers are at risk of depression, isolation, injury and poverty. You cannot solve all these problems, but there IS something you CAN do. Many carers find any kind of social contact difficult, through time, expense... or the fading away of their social networks. Many rely on email and phone to stay in touch and remind ourselves we are human. An empty inbox can be a body blow when you are down.

All I ask is that you look at your friends and aquaintances and identify the carers among them. I can almost guarantee that you know at least one! Then pick up the phone, write a letter, send an email, a joke, a smile and LET A CARER KNOW YOU CARE.

Please, if this makes sense to you, pass this around.

Thank you.

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The creaking wakes me.

Four a.m., and again I am poised,

Ready to rise from the sofa bed,

Conscious of the steel strut against my spine.

Above my head, in the room once mine,

The bed that was mine once upon a time

Grinds against the wall.

He is wakeful again.

Another bad dream?

There are many.

There are tears.

There is fear and ‘what if’s?’

Every day.

Even the wonderful dreams hold pain,

The pain of loss and memory

The pain of what was and what should have been.

Reality is his nightmare.

“It is shit being me,”

I can dream too.

I can watch the flaying of a loved one,

A mangled body, broken in hate,

Love disembowelled by madness.

I stifle my screams in  the pillow

Or sob in the bathroom, quietly.

Even now.

I can see the scars on his chest

The tubes went in there, and there, and there..

No escape from heartache and memory,

Even in hope.

Body aches,

Mind is tired,

Bones hurt,

Muscles beg for peace,

Wedded to exhaustion.

The last shreds of youth

Leached away

Worry is my bedfellow.

Yet, how dare I complain?

How dare I feel tired?

He should be dead,

Fighting each day,

Hunting life with passion,

Pursuing the impossible,

Grasping its tail

With paralysed fingers.

I the squire, he the knight,

The dragon of disability

And the worm of despair,

The quest, the grail of normality.

Our shield is laughter

And gentle lunacy.

Our armour a refusal

To accept pain as answer.

My sin is hope,

My sin despair

Poised on the knife edge

Razor sharp, each step cutting.

My burden, guilt.

Failure to protect

To prevent the unpreventable

Failure to heal the unhealable

Illogical, ridiculous.

Yet human.

Because I am his Mum.

And because I care.

Sue Vincent