Care, Work and Hope
For Carers Week (5 - 11 June), Gabriela Matouskova, Hope For The Community CIC CEO, shares her personal caring story.
Nine years ago, I received a call informing me that my mom's health had significantly deteriorated. Doctors confirmed that her terminal cancer had spread throughout. I knew that time was running out.
Without hesitation, I boarded the next plane to the Czech Republic. Unfortunately, due to her poor health mom couldn't come home, and the end-of-life care she received at the hospital was inadequate. After weeks of searching, I finally found an available place for her in a hospice outside of Prague.
At the time, I was a single mom, working full-time, with a child under three. I had already exhausted most of my annual leave supporting my mom at home or remotely. While my employer was understanding, unpaid leave wasn't a viable option financially. My GP signed me off work for mental health reasons, allowing me to spend my mom's last days with her.
The weeks I spent caring for and living with my mom in the hospice were incredibly challenging yet profoundly humbling. I will forever cherish the time we shared — the laughter, tears, and overwhelming sense of helplessness that gradually transformed into acceptance followed by the heavy weight of grief.
Today, I feel an immense gratitude for having had the opportunity to spend those final moments together.
My caregiving experience was “short” compared to those who tirelessly look after their loved ones, often for years without respite. In the UK, more than 5 million people provide unpaid care: helping children grow and learn, supporting disabled people’s independence, ensuring elderly relatives live fulfilling lives, and keep homes running. 3 million combine caring with paid work. Balancing work and caregiving often leads 1 in 6 carers to give up their jobs or reducing their hours.
Next year, with the anticipated Royal Assent, the Carer's Leave Act will grant an estimated 2.4 million carers across the UK the statutory right to take 5 days of unpaid leave per year. Eligible employees will be able to take Carer’s Leave regardless of how long they have worked for their employer. This not only helps carers achieve a better work-life balance but should take less pressure of deciding whether we can afford to care.
The statutory carer's leave is a significant step forward, but there is still much more we can do to recognise and support carers.
The theme for Carers Week 2023 is 'Recognising and supporting carers in the community'.
Caring without the right information and support can be tough. Carers often experience poor mental health, including anxiety and depression, alongside stress, isolation and poor quality of life.
Our work focuses on building partnership to support cares to focus on their own wellbeing.
In collaboration with Carers Trust Heart of England, carers and parents, we have worked to co-design digital self-management support programmes called the Hope Programme aimed at Carers and Parents of Autistic Children.
Since launch of the digital Hope Programmes 2.5 years ago, nearly 2000 carers and parents have benefited through meeting others in the same situation, finding practical information and learning new skills to support their own wellbeing cope with the challenges of caring. The Programmes have been delivered with range of partners across the UK, including Scotland and internationally in the USA.
I was proud to use my personal experience of caregiving and loss to contribute to the programme's content development.
Join me in reading stories from carers who have embarked on the Hope Programme describing their own journeys.
