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Jocelyn's story

 

We do still have good days and bad days and I do worry about the future. But I feel today as if I matter, and Amy matters and Darran matters. It is a great comfort to know there is an organisation there to help you when you need it.

 

Jocelyn1

When Jocelyn's daughter Amy was three-years-old she was diagnosed with a rare genetic disorder which has resulted in multiple operations over the past three years, and requires extensive care.

Just a year before Amy’s diagnosis, Jocelyn's husband, Darran, a steel worker, was involved in a horrific industrial accident which resulted in him losing an arm and leg.

It was an incredibly difficult time for the family and in particular for Jocelyn who became carer to both. She herself has epilepsy and has had spinal surgery but continues to be wife, mother, nurse and counsellor as well as carer.

Amy had been a poorly child since birth, suffering regular stomach upsets and chest infections, often resulting in hospital admission, and then began losing her entire head of hair every three months.

Diagnosis of her condition also meant travelling for many specialist hospital appointments.

After Darran’s accident, Jocelyn had to manage with Amy’s care and medical appointments alongside the trauma of her husband’s amputations and daily long distance travel to visit him in hospital.

Amy and Darran continue to need daily care support and though Jocelyn has many years’ experience, caring can still be difficult.

Jocelyn said:

“When I look back I just think how did we get through that? Caring is not something you can plan for. Caring is something you just have to take on board and deal with as it comes. Truthfully, it was tough.

“It was at a time of sheer desperation that I came across Carers Wales. The number was passed to me by another parent. I made one phone call and straightaway got the information I needed to make sure we got the right support. I am so grateful for that phone-call.

There are still times I need to pick up the information booklets and only yesterday I urged another parent, who was at his wits' end over how to get help for his disabled son, to call Carers Wales and get advice.

We do still have good days and bad days and I do worry about the future. But I feel today as if I matter, and Amy matters and Darran matters. It is a great comfort to know there is an organisation there to help you when you need it.”

THIS IS CARING

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