Who cares for the Carer?

This is a post that I wrote back in June 2017 for Carers Week. The week we first found out our beloved NHS respite unit, Nascot Lawn, was due to close as a result of HVCCG withdrawing their funding.

Lennon sadly died in August 2017 and I am no longer a Carer – but I was for 10 years, and I would of been for another 10! Despite it being extremely hard work and all consuming, I loved looking after Lennon. My life had a purpose – keeping my son alive and happy, and making sure that he reached his full potential in life.

………………

As a Carer providing 24 hour round the clock care to my son I get paid 37 pence per hour. Yes you read that correctly – 37 pence.

I was once told If we put Lennon into a residential

Placement for 48 weeks of the year it would cost in excess of £200k! (Mainly because his medical care is so complex.)

I have no senior, no union, no one who takes over from me, no back up when I’m ill or my other children need me – it’s just me on own. Don’t get me wrong, Lennon’s dad is amazing, but he has a full time job and he can’t be my safety net.

Nurses get paid a pittance for what they do, but they clock on and off – I don’t. I’m a nurse for 24 hours a day 7 days a week, would that be allowed in any hospital??!

Even when Lennon is in hospital I am still providing him with all the medical care he needs, I don’t get a break as I’m not allowed to leave him alone on the ward in the care of the nursing team as he is too complex. Yet I have no nursing or medical degree or training.

I am responsible for a gastrostomy, jejunostomy, ileostomy, a 24hour feed, making up extra fluids, a ton of medications including controlled drugs and injections, strict fluid input and output measuring and charting and deciding what is a medical emergency and what isn’t. Ordering in and managing supplies from 6 different companies. I have to remember appointments, deal with professionals, fill out untold amount of forms, attend meetings.

I also have to be my child’s eyes, ears and communication aid. He communicates through me.

I have to be on the top of my game always. I cannot take my eye of the ball ever, not for one second.

Is this fair?

He is my son, and it is my duty to care for him whatever his needs are.

I feel carers deserve a little more acknowledgment and respect for what they do, day after day. Most of us give up our whole lives for the person we are caring for.

I gave up my life in order to give my son the life he deserves.

 

Mummy and Lennon, during a stay at Great Ormond St.

 

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