To mark Carers Week, Jane Hill, director of client services at Reframe Cancer, speaks to Health & Protection about the challenges of caring for her cancer-stricken mum remotely, being let go by her employer and why she does not consider herself a carer as she has just done what any daughter would do.
When Hill’s mum was diagnosed with stage four ovarian cancer, she had already faced cancer multiple times before – skin, breast, and now ovarian.
However, with a more devastating prognosis and living 150 miles away, Hill was faced with navigating the complexities of caregiving remotely, ensuring her mum received the right support while balancing her own work and life commitments.
This meant that rather than popping round with meals or driving her mum to appointments, her role became one of constant check-ins, detective work, and emotional support – from a distance.
Very emotional time
“My mum was diagnosed with stage four ovarian cancer in November 2022; she had been caring for my dad for more than two years with terminal prostate cancer and we sadly lost him at the same time,” Hill tells Health & Protection.
“It was a very emotional and stressful time for all of the family especially myself and my brother who had to help make funeral arrangements for my dad and become her carer on her new cancer journey.”
But Hill added her situation was compounded by the fact that her employer at the time could not support her.
“At that time I had to leave my employment as they weren’t able to support me in the time off,” she continued.
“I needed to support my family. Over the last eight 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 three or four times a day, especially when times are difficult.
“Luckily, I am also able to use my pharmaceutical background to help with medicines management and managing side effects.”
Peaks and troughs
In terms of how she has been able to cope, Hill reflects on a period of fluctuating care requirements.
“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 two and a half years,” Hill says.
“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.”
Thankfully, Hill managed to get herself back into work at the end of last year which has brought with it an important set of benefits.
“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,” she added.
A key benefit has been Reframe’s carer support, Hill says,
“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,” she continues.
Emotional and practical support
Emotional workplace support and having a safe space to communicate has been valuable.
“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,” Hill continues.
“She has come close to the end on a couple of occasions in the last eight to 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.”
Food and dietary support has helped including 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,” Hill adds.
Carer burnout
And Hill maintains that she does not think she would have coped without the additional support.
“There have been times when I have felt the effects of carer burnout,” Hill continues.
“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 while this is all going on around me.
“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.”
Not a weakness to need support
Hill is also keen to point out that it is not a weakness to need support.
“You don’t need to be receiving financial benefits to be classed as a carer,” she continues.
“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.”
Looking ahead, Hill reveals she fears the void her mum will leave, but she is sure there will be support from family, friends and her workplace.
“Sadly my mum is terminal and we are getting close to the end,” she continues.
“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 is 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.”