Carers Week 2023: My Sister

Hi, I’m Darren, Chief Digital, Data, and Technology Officer here at the NHS Business Services Authority (NHSBSA), I am a dad to two children Freddie (9) and Poppy (7), and I’m also the main caregiver to my sister Deborah (56).

The journey of caring for my sister Deborah really began six years ago when my mother passed away. Until then between them, my mum and dad had been the main carers for my sister and whilst I had ‘helped out’ with some things, it’s fair to say I hadn’t fully appreciated all of what they had done. With my father aging and requiring an increasing level of care himself, I became the main carer for my sister. 

Deborah was born with profound learning disabilities and has developed severe muscle deterioration in her lower limbs which has significantly deteriorated over the past 5 years severely restricting mobility and balance, resulting in a need for constant care and support. Lots of the tasks which many of us are able to do without much thought and take for granted each day are not possible for Deborah without support, such as a shower or bath or making a sandwich or cup of tea. Mobility is restricted to furniture walking or with assistance.  

At first, it was a huge adjustment for me to take on this new responsibility which I had not prepared myself for both mentally and practically. 

From a practical perspective, balancing existing home commitments along with work commitments is a challenge for anyone and when adding in the responsibilities which come with caring for someone, it takes a lot of planning and trying to establish new routines. It’s not just me who is a carer for Deborah, but also my partner Julie, as many of the commitments have either meant that as a family, we have not been able to do things and Julie has taken on a lot of additional responsibilities, a wider family impact often overlooked.

One of the biggest challenges I faced has been finding the right balance between work, family life and caregiving, and the unplanned adjustments required for example due to Deborah falling or a cancellation from a carer.  I am lucky to have a supportive workplace that enables flexibility, and the ability to adapt to the short notice demands which can be experienced when caring for someone; the first few months of establishing new routines and adjustments to existing routines were critical for me. Having flexibility with work during this time was invaluable. That however doesn’t take away from the self-imposed pressure that I and many other carers put on ourselves, feeling guilty when having to take a call in a meeting, or having to re-arrange a scheduled commitment. 

The other element I wasn’t prepared for was the mental aspects of caring for Deborah. My sister is 15 years older than me and as such we weren’t particularly close when growing up. So, as an adult having to build a very different relationship and one in times of high levels of vulnerability and also frustration and difficulty were very challenging for both of us. Again support from various networks in this was invaluable, learning from others who have been caring, and knowing that lots of what I was experiencing were similar or relatable was a huge reassurance. 

I am very lucky to have good support from others in providing care for Deborah, including my father and also from external support such as ‘Shared Lives’ which is a scheme supported by Local Authorities. 

Caring for a loved one can be challenging, but it’s also one of the most rewarding experiences a person can have. It’s important to remember that there is support and help available and that self-care is essential. Having a network and knowing where you can get support when things are challenging is vital.