To mark Carers Week, Jane Hill, director of client services at Reframe Cancer, speaks about the challenges of remotely caring for her mum who has a stage 4 cancer diagnosis.
What was your experience with your mum?
My mum was diagnosed with stage 4 ovarian cancer in November 2022, my mum had been caring for my dad for over 2 years with terminal prostate cancer and we sadly lost him at the same time. It was a very emotional and stressful time for all of the family especially myself and my brother who had to help my mum make funeral arrangements for my dad and become her carer on her new cancer journey. At that time I had to leave my employment as they weren’t able to support me in the time off I needed to support my family. Over the last 8 months my mum has steadily declined and needed increased support from myself and my brother. My brother supports her taking her to hospital appointments and A&E when required whereas I support more virtually due to the distance between us and face time her daily sometimes up to 3 or 4 times a day especially when times are difficult. Luckily I am also able to use my pharmaceutical background to help my mum with medicines management and managing side effects.
How did you initially cope with work and life in general?
There have been many peaks and troughs in the amount of care required by my mum depending on how well she has been throughout the last 2 1/2 years, however over the last few months it’s has been really difficult emotionally to juggle life, my own family commitments, work and caring for my mum as well as moving house at the same time.
What support did your employer (Reframe) provide?
I have worked at Reframe since December 2024 and my experience and background with cancer is one of the many reasons I joined as I know the difference they can make to a patient’s journey and outcome along with supporting the carer. Reframe have supported both my mum as a patient and also myself as a carer, advising and helping when I’ve needed to have difficult conversations with my mum such as end of life, hospices and funeral arrangements. Reframe have their Care for Carers product which is designed to help employers support staff caring for a loved one with cancer. They have effectively provided this service to me as an employee, giving me a programme of support and allowing me to navigating work and life during an incredibly difficult time.
How did these benefits help you through? Which part of the service was most effective in your view?
I have felt very supported by their expertise & clinical advise both emotionally and practically, it has felt like a safe space to open up and be vulnerable on the most testing and stressful of days when we didn’t know what the outcome would be with my mum, she has come close to the end on a couple of occasions in the last 8 – 10 weeks. Being told to take care of myself by the team was also really useful and made me stop and think about the impact it was having on my own wellbeing.
How did these services help you? and what difference did these benefits make?
They provided solutions to problems that the NHS weren’t able to cover due to restricted resources, for example they have helped with dietary advice when my mum was put on a clear liquid diet due to a bowel obstruction caused by the cancer and gave alternative foods to try to vary her diet and taste such as Skips and Wotsits, this really cheered mum up and something so small made such a large difference to her which helps me support her and keep up her levels of positivity.
How do you think you would have coped without these benefits?
There have been times when I have felt the effects of carer burnout and I don’t believe I could have got through it without the support from Reframe both personally and professionally. At times my head has felt overwhelmed with all of the emotions of the situation and I have also felt guilty at times for making time for myself to have fun whilst this is all going on around me.
What lessons did you learn about the benefits on offer and yourself going through this?
My mum is an incredibly strong lady but giving her access to talk to an independent nurse at Reframe about topics she didn’t want to discuss with the family such as end of life preferences has been a huge benefit to both my mum and myself. I have learnt to expect the unexpected and things can change from good to bad very quickly, I have also learnt to pick up on signs and signals from my mum when she says all is fine, but I can see it isn’t really and she needs urgent medical help.
What message would you send to others about the importance of ensuring you have support in place?
It’s not a weakness to need support, You don’t need to be receiving financial benefits to be classed as a carer, before I joined Reframe I would never have classed myself as a carer but I do spend several hours a day outside of work supporting my mum. To me I was just doing what any daughter would do to support a parent.
How is your mum doing today? And what are your plans for the future?
Sadly my mum is terminal and we are getting close to the end (the consultant advised a couple of weeks to a couple of months max on the 22nd April) although if you met her you wouldn’t know as every day, she gets up and puts on a brave face, she is the strongest woman I know. One of my fears about the end are the void I will have in my life from the hours I spend on facetime everyday with my mum and it will just take time to heal from the emotional rollercoaster of the last few years, however I know I will be supported by Reframe and my family and friends.
Reframe’s new service enables organisations to better support employees caring for someone with cancer - reducing absence, improving presenteeism and enhancing wellbeing. You can find out more here