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.

This week is Carer’s week in the UK.

The poem above, and the job description below, I wrote a couple of years ago. I am one of the lucky carers. My son has a budget for care and I am paid these days… not a lot, and the System that required me to prove 35 hours a week for Carer’s Allowance as detailed below will only permit him 27 hours of care over seven days.

The 6.5 million carers in the UK who are unpaid or entitled only to the Carer’s Allowance are silently saving this country millions every year.  The training and support is minimal and provided mainly through charities. Carers tend to learn quickly that they have to find help for themselves or do without. Often they do not know where to look or have the time to take what is offered.

Most carers find a huge fall in their own financial security, coupled with a fall in their own standard of living, and impact on their own health.

Carers can be you or I. They can be elderly, they can be children.  Most do it for love.

You almost certainly know a carer, even if they themselves do not recognise their role. It can be a heartaching and lonely life. Please, take time to read this today, and if you are able, reach out to a carer you know. Pick up the phone, share a coffee… show them they are still people too.

The Carer’s Week website states:

There are over 6.5 million carers in the UK.

Every day 6,000 people take on new caring responsibilities.

Every year two million people take on new caring responsibilities.

Most carers (5.7 million) are aged over 18 and the peak age for caring is 50 to 59.

1.5 million carers are aged over the age of 60.

There are 175,000 young people under the age of 18 who provide care, 13,000 of these provide care for 50 hours or more per week.

One in eight workers in the UK combine work with caring responsibilities for a disabled, ill or frail relative or friend.

Job Description: Personal Carer

Minimum Hours per week: 35 (be aware that you must pay your own expenses)

On Call: Permanent 24/7

Emergency callout: whenever required 24/7

Holiday entitlement: 0

Days off: 0

Pension:0

Age limits: None

Health requirements: None… just the ability to do the job anyway, regardless

Training: None

Remuneration:

£59.75 per week ( or £1.70 per contractual hour)

Overtime not payable

(Any pay at all forfeited if you are under 16, in full time education or earning more than £100 per week elsewhere. Also dependant on your caree being officially classed as sufficiently severely disabled. Up to £59.75 per week may be deducted from any other benefits you are surviving on)

Rewards:

The knowledge that you are providing essential care for a friend or relative that would otherwise not be provided at the same level

That you, personally, are helping to save the UK over £119 billion a year,

The knowledge that you, at least, do care.

Main duties including,(but not exclusive):

Cooking, shopping, cleaning and general household duties

Intimate, personal care and grooming of third party,

Toileting and bathing, and dealing with accidents

Administering medications

Heavy lifting

Toilet cleaning

General housework

Laundry &ironing

Window cleaning

Household repairs and maintenance

Dealing with refuse

Gardening

Personal assistant

Secretarial duties

Advocacy

Researcher

Diary keeping

Taxi driver

Wheelchair handler

Chaperone

Bodyguard

Hands on physiotherapy

Counselling

Personal Training

Occupational therapy

Devil’s Advocate where required

Listener & comforter

Essential Personal Requirements:

Thick skin

Patience (required for dealing with both caree occasionally and the ‘system’ on a daily basis)

Ability to work under pressure

Not squeamish

Must be prepared to drop everything at a moments notice

Must be prepared to sit on phone for as many hours as required

Must be prepared not to have a personal life

Must not mind being taken for granted by the system who use emotional blackmail to ensure you do your ‘duty’

Must not mind becoming a second class citizen

Must be able to accept loss of lifestyle, dreams and plans for the future

Must be able to accept financial implications and probable poverty

Must be prepared for inevitable impact on health through physical and mental stress

Recommended reading list:

Humour-

Carers Rights (Equal Opportunities)Bill

http://www.parliament.uk/documents/commons/lib/research/rp2004/rp04-013.pdf

http://www.nhs.uk/CarersDirect/guide/rights/Pages/carers-rights.aspx

Financial :

http://www.carersuk.org/newsroom/item/2121-unpaid-carers-save-£119-billion

Health:

http://www.carersuk.org/newsroom/item/2393-counting-the-cost-of-caring-cash-strapped-carers-‘sick-with-worry’-about-finances