In this ‘stories that matter’ series, we will introduce you to people who live or work in Rhondda Cynon Taf, Bridgend and Merthyr Tydfil to hear their story, and find out what matters to them when it comes to health, social care and wellbeing.

 

I’m a Pontypridd girl, born and bred. With my parents being from Treforest and the Rhondda Valleys, I like to think I’m a mixture of the top and bottom of the valley.

My family are very proud Welsh people. My dad was a RAF veteran and my mum was really into Welsh culture; singing in choirs, folk dancing, the Eisteddfod.  If you cut us all open, there would probably be leeks and daffodils inside us!

Mum was one of seven, and as a family we were surrounded by many different ages, and as a result, people with different needs.

My mum’s family were from a Welsh mining village and knew real poverty. Sometimes when she was growing up there would be several people sleeping in the same bed.

We were a very close and loving family, but we understood hardship. As a result, we always wanted to help somebody and did whatever we could to support our friends and neighbours.

This family ethos was with me from a young age. As a child, if there was a problem I’d always want to help, or if somebody was upset, I’d want to give them a hug.

Growing up I really wanted to be a primary school teacher but I changed my mind. Career wise, I drifted in and out of admin roles, but a desire to care for people was always in my heart.

My first encounter with dementia was in my teens when I was helping my parents to care for a relative. This was a catalyst for me as I experienced health and social care first hand.

At the time there was lots of stigma around dementia, and it was very difficult. However, as a caring family we were determined to make sure our relative was well cared for and supported.

This experience set me up for the future, as I ended up caring for both my parents.

When Dad was diagnosed with dementia he was already mum’s carer. They both had numerous health conditions, and I stepped out of my life to care for both of them.

Dad’s needs changed very quickly. He needed support to eat and drink. He couldn’t communicate with people unless they knew how to speak with him.

Looking back, I realise I missed quite a bit of my life. It was a very hard twelve years caring for Dad, while having a family and trying to do different things, like my education courses too.

I have one daughter who is now 26. When you have time to reflect as an unpaid carer, sometimes you wonder if you gave equal time to everything. It’s very hard to do that.

However, over the last decade I have been determined to be involved in things as much as I can.

I’m an avid learner, and while caring for my parents, I studied wherever I could. I enrolled at Merthyr Tydfil College and the Open University, and registered on loads of courses. From learning about dementia and complex needs to education, to date I’ve taken 57 courses and I feel like I have lots of knowledge.

If I have one main learning to share about care, it’d be a person shouldn’t change to fit into their community; the community needs to fit into them.

Although my Dad lost lots of communication, he was still really engaged in community life. In Pontypridd, I took Dad to different groups, and would also have the opportunity to get involved myself.

 

Being involved is so important. If a service is about somebody’s life, then they should be fully included in decisions that are being made

When I started caring for Dad, I joined several panels and groups so I could share my experiences, and it’s been incredibly valuable for me and the people I speak with.

It’s important for me to be able to voice my experiences of being an unpaid carer.

When caring for somebody, we don’t stop our day jobs as doctors, hairdressers, teachers, train drivers and so on. We have to adapt, and while we want to care for somebody we love, it is tough.

When I am able to share my story of caring for my parents, whether that’s in a Zoom meeting or in a survey, I know I have thirty years of experience behind me. It is very empowering to know what I am saying comes from personal experience.

So what can we do to help others have meaningful conversations and share their thoughts and feelings?

To remove barriers, we need to do things differently and remove labels. Sometimes when there are lots of different people from different backgrounds in the room, it can feel like a culture of “them and us.”

Really, labels are irrelevant – we are all setting out to support somebody.

What we need to be doing is starting every conversation by saying; “the most important person in this conversation is the person who has needs.”

There’s some brilliant examples of co-production across the region, and we need to ensure we learn from that.

Removing barriers will also help us share feedback more openly and honestly. We need to be able to understand what is and isn’t working in order to change services for the better, and genuinely put the people we care for at the heart of decisions.

I feel the best way to do this is to help communities to build good connections and trust. When I was growing up those communities existed, and they still can.

There is a well-known saying; “nothing about me, without me.” By including people with personal experiences in conversations and decisions, we can make things better together.

Ceri’s experiences and feelings will feed into our Assessment of Local Wellbeing and Need. Read about this here.