Being a parent carer is a journey filled with love, resilience, and moments of deep challenge. As you support your child through the highs and lows of their childhood, the weight of responsibility can feel overwhelming.
For Becca, every day begins and ends with her son in mind. Like countless others in her position, her role as a parent carer is constant, complex, and often invisible to the world around her. But recently, something changed as Becca began to reflect not just on the care she gives, but on the identity she holds and the staggering lack of support that defines her reality.
“Like many parent carers, I spend every waking moment thinking about my son, which doesn’t always leave a lot of time for personal reflection. I’ve also been thinking about my role as a parent carer: my rights, my limited options and my uncertain future.”
How does society view unpaid parent carers?
But what happens when you start to examine a role you’ve lived for years without ever truly thinking about it in depth? For Becca, that reality began when she joined a focus group for Carers UK and the We Care Campaign.
“I’ve been considering how others in society view my role; family, friends, professionals, social care and the government. Last year, I found myself in a focus group… talking about specifics such as carers assessments, transitions for carers, carers’ leave etc. I realised I had a lot to say!”
In speaking up, she found not only her voice, but that of many others. She reached out to local parents and discovered something startling: some didn’t even realise they were parent carers. “Most of all, it was being faced with discussions surrounding the massive inequalities and injustices that parent carers face on a daily basis which made me unexpectedly boil with frustration.”
The financial burden of caring
Becca’s honesty isn’t about blame, and it’s certainly not about regret; “Now, I should point out that I feel no resentment towards my son for my role. Not one bit. But I definitely feel resentment towards the fact that me and millions of others like me find ourselves literally trapped both physically and financially by our parent caring role, with little or no help from local authorities or the UK government.”
The financial burden is another part of the story for unpaid carers, for Becca, the personal toll is also steep; “What I do know is that my life as his parent is taking a very different course than the lives of my friends with non-disabled children… I am unable to work as he is at home with me, full-time… giving up work or going part-time is by no means a choice. The pitifully low rate of Carers Allowance we receive… is extremely insulting in these circumstances and demonstrates just how little the government recognises and values the crucial and life-changing work we do.”
Defining a parent carer
This is why Becca believes the term parent carer is more than a label. It’s a declaration and should be embraced. “I want to define a parent carer as:
- A person who shows total dedication, unconditional love, kindness, respect and nurturing to their child, indefinitely.
- A person who advocates knowledgeably, fiercely and bravely, despite often being met with unfair blame and hostility.
- A person who is often at breaking point, but always finds a way to bend just a bit further when needed, because there is no other choice.
- A person who is most definitely not a superhero, but is forced to draw upon every bit of courage and strength on a daily basis, despite their own personal struggles.
- A person who asks for a basic level of recognition and help in the extraordinary role they do, to ensure they are financially, physically and psychologically able to continue in their role for the future of their children.”
Parent carers’ mental health is in crisis
Parent carers across the UK are in crisis and their mental health is bearing the brunt. Carers UK and Public Health England have both documented the serious and lasting impact of unpaid caring on health and wellbeing. The numbers are stark, but behind them are stories like Becca’s, stories of exhaustion, isolation, and quiet determination. “I believe that if something doesn’t change for us soon… we may not be able to continue saving [the government] as much money in care costs as we currently do.”
Becca’s call for help
There is no one-size-fits-all solution. Just as every child is different, so is every carer. “Many of us have jobs, our own disabilities, and may be caring for multiple children or adults… what is needed is a flexible portfolio of help… Help needs to be accessible and tailored to the needs of individuals and their own unique circumstances.”
Through her caring journey, Becca has found something vital; a renewed sense of self. “For me, not having a choice in life has become a great motivator… accepting and embracing the title of parent carer, owning that title, has given me a sense of pride, openness and purpose.”
Becca’s story is a call to awareness and to action – it reminds us that behind every child with complex needs is a parent who is carrying the weight of the world, often in silence. It’s time their voices were not just heard, but action taken too.
Rebecca Huseyin – PDA Society Trainer – http://www.aboylessordinary.com
Support is available to local parent carers
For parent carers living in Cambridgeshire, Peterborough and Norfolk, looking after their children with additional needs, we offer a range of free information and support including:
- Hubs and events
- Workshops
- Family Carers’ Prescription
- Caring Magazine and monthly newsletters
- Carers’ card.
Find out more about the support available for parent carers.
