Back in 2019, Yasmeen wrote about her life as a caregiver to daughter Shakeerah, who was diagnosed with a brain tumour just after her first birthday. During Carers Week 2022, she reflects on some of the continuing challenges she faces.
The challenge of being a parent caregiver is that the challenges never cease. As your child gets older, new challenges emerge.
Getting Shakeerah into an educational establishment that met her needs, three years ago, took the best part of 18 months. Every year, I have to sit through an EHC review to see if those needs are still required to be met by that particular school. The next step will be secondary school. Whilst I have the knowledge to navigate through the complex SEND process, it is still a daunting prospect.
The other challenge is getting the right team of carers in place now for when Shakeerah gets older. I now employ five carers who provide Shakeerah with 24 hour care, but that has taken me five years of advertising, interviewing and trialling new people. I’m always thinking about Shakeerah’s future and what she’s going to need as she grows up, so that I’m one step ahead. I now have a team who is working with me to enable Shakeerah to be as independent as possible.
As mentioned, I now employ a team of carers who do the bulk of the care. I have all 7 nights covered and Monday-Friday days and every other Saturday. This enables me to carry out administrative duties as an employer (rosters, payroll, tax etc) and sorting out medical appointments and stock. It also gives me time to have some me time. Whilst it is nice having the staff, I just don’t have enough private family time.
The Children’s Trust continue supporting me as a parent caregiver. I still access the Short Breaks which gives vital respite to families.
What I wrote in my blog in 2019 is still relevant today but what I have behind me now is knowledge, and knowing there are organisations like The Childrens Trust to offer support and guidance.
The Children’s Trust offers residential short breaks, with flexible, nurse-led care for children and young people between the ages of 0-18 years.
Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK.
Residential short breaks at The Children’s Trust offer flexible, nurse-led care for children and young people between the ages of 0-18. Set in 24-acres of beautiful woodland at our national specialist centre in Tadworth, Surrey, we offer overnight stays in comfortable, fully-accessible bedrooms, available seven days a week.
Yasmeen, mum of Shakeerah, shares her experience as a parent-carer for Carers Week 2019.
