The Life of a Full-Time Carer for Disabled Access Day

Accessible Derbyshire are Visit Peak District’s chosen charity for 2016, so we wanted to introduce them to you by firstly raising awareness of just how much carers do, and how much needs to be done in the world of accessibility.

Here is Gillian Scottford’s story, who is a founder and force behind of Accessible Derbyshire:

 

My name is Gillian and I am a carer. Everyone knows there are lots of carers around the UK but what does it actually mean?

When I got married as a young woman I had so many dreams. My dream was to have this perfect little family, my perfect job as a District Nursing Sister in Derbyshire, perfect holidays and a perfect life.

My first son was all of the above. 3 years later when we had Thomas my whole life was turned upside down, inside out and changed forever

Thomas was born critically ill. His condition was so life threatening that we never believed he would survive. Thomas was left with severe brain damage and a life-threatening health condition. This meant he would need 24 hour care for as long as he lived to manage his complex health issues which have already included 4 respiratory arrests requiring life support.

Two years later I became pregnant again and was given the all clear that Sam did not have Thomas’s condition. We were delighted to have a playmate for our eldest son. Tragically, however, it transpired that Sam had suffered a stroke during pregnancy and had been born with a left sided paralysis, learning difficulties and autism.

The despair that we felt was too difficult to describe. Our lives revolved around illness, therapy, hospital appointments, worry and sleepless nights – all intertwined with the usual joys of parenthood.

My husband and I both had to give up our careers to care for our precious, beautiful children creating financial worry and hardship to add to the challenges of our caring responsibilities.

I always say that I feel like a jigsaw and that my children are a part of that jigsaw: a part of me 24/7. Having someone you love more than anything in the world, who needs you for every little part of their life, is an overwhelming feeling of responsibility. When they need feeding, when Tom needs moving position, or needs changing, when Sam needs ‘tucking in bed’ several times in the night, when they are poorly but can’t tell you, when they need you every hour of every day it is exhausting.

I have been lucky. My family have always been there for me 24/7. I have cried, I have thought I could not carry on, but they have looked after me.

Many of us know the exhaustion that comes with the early months of looking after a new- born baby, many of us know what its like to work an endless, difficult shift at work and long for it to be over, many of us know what its like to run a marathon and to feel that, once you’ve crossed the finish line, you can’t move another muscle.

Being a full-time carer means you have to run that marathon every single moment of of every single day and when you feel like you have crossed that line you have to run it again and again and again…

The psychological, social, physical, emotional and financial strain takes its toll. You can feel yourself crumble, time after time, but you look at your beautiful child who needs everything and never asks for anything and you know you have to keep going.

At  Accessible Derbyshire, Jane and I both know first hand what this feels like: Jane’s daughter Megan was born with a unique chromosome disorder, severe autism, severe learning difficulties and challenging behaviour. There have been many times when for them too, life has been ubearably difficult: times when Jane was so desperate that she quite simply wanted to die.

Following a nervous break-down, from which she is still recovering three years on, Jane’s daughter entered a full-time, residential placement where her acute needs can be met and her potential fulfilled.

However, the tragic newspaper headlines highlighting yet another carer who has ended their life, and sometimes that of the person they care for, tells us that for some people help comes too late – or not at all.

Carers need support. Every once in a while someone needs to ‘rescue’ them from their responsibilities.

We feel passionate about the importance of giving carers a break from their responsibilities:  to provide a weekend away, a 1 or 2 night break  or a special treat to full time carers who desperately need help. A break that does not cost them financially.

We are asking the tourism industry in Derbyshire and the Peak District to help us in our aim.

We would like as many organisations as possible to donate a ‘short break’ or special treat that we can give to a full time carer to provide truly deserved respite and an experience they will cherish: a  truly ‘carefree’ break.

Simply knowing that someone, somewhere has cared enough to help would mean so much.

If you own a hotel, bed and breakfast accommodation, a holiday cottage, restaurant, beauty salon, gym or spa and would like to make a difference please get in touch with us at info@accessiblederbyshire.org.

To donate to the cause, click here for the Just Giving page.

Together we can help people carry on.

Thank you.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s