Ellie cared for her husband Rob, who sadly passed away in 2024 after suffering with MND (Motor Neuron Disease) for five years. Her own personal experience of being a carer has contributed to her current role at Carers First as Project Officer and enabled her to truly understand firsthand how important it is that carers are supported and offered the information they need, including knowing their rights.
Ellie’s husband Rob was diagnosed with MND in 2019, which “changed [their] world completely.” Initially, he was well enough to continue to live reasonably independently. However, as time went on, he began to lose the use of his hands and then his legs, meaning Ellie had to step in a lot more often to complete household tasks, whilst maintaining a full-time and high-pressure job as a marketing director.
After experiencing a difficult transition period, from leaving full-time employment due to stress and stepping into caring full-time, Ellie had gained access to emotional support in the form of therapy, counselling and coffee groups, from the hospice where Rob was receiving care. This moment changed everything, and after three and a half years without adequate support from organisations, Ellie finally felt as though she was being heard by someone who had the tools and knowledge to help her process everything she had been going through.
“Once you find [the support], it is amazing. As a carer, you must shout out about what’s going on and get people to help you. Adapting to caring was a big challenge, suddenly I found myself feeling incapable and without the knowledge when it came to caring. I didn’t know what help I was entitled to, or what being a carer meant. I wish I knew then, what I know now, about the support available to me.”
She understands that, for a lot of carers, selfcare can feel hard to justify, but ultimately it is a lifeline and the benefits are immeasurable.
Even during the most difficult times following his diagnosis, Ellie’s love and dedication to caring for Rob remained strong. Sadly, Rob passed away in 2024 after a long battle with the disease. Ellie shares how grateful she was to experience the time she had with Rob, and their daughter Alice, making memories in the time following his diagnosis: “We tried to do as many amazing things as we could to make some amazing memories, including travelling.”
After experiencing the positive effects that support brings to those caring for someone, Ellie felt like she had an opportunity to use her knowledge, experience, and true compassion to help others facing similar situations. Since then, she has joined Carers First as Project Officer and strives to continue reaching those in need of support.
“Finding somewhere that I can use my experience has been amazing. I wake up every morning wanting to come to work and help people. Knowing how bad [caring alone] can be and how to help someone is so satisfying and fulfilling.”
Ellie continues to care for her daughter Alice, who has autism, and has found that the flexibility and genuine understanding offered to her at work has helped tremendously with finding a work-life balance, something she believes every carer should have access to.
Ensuring that carers know their rights early in their caring journey and are aware of the support they are entitled to is very important to Ellie. She speaks about initially being hesitant to share her caring situation with her past employer, in fear that it might affect her career. It was only when she revealed this to her employer that she realised how much support she could have been benefitting from, such as reduced or rearranged working hours, and other accommodations to help her feel supported.
“Suddenly your life becomes easier when you use the help you have available to you. Reaching out is always the better thing to do.”
She expresses how proud she is to be a part of someone’s journey to finding support in her role at the charity, emphasising how feeling understood has helped her to feel even more confident in what she does, “Finding an employer who is understanding and knows that I’m still a carer is essential – I get that from Carers First. That enables me to do a great job and add value to the charity.”
Ellie’s story highlights the importance of accessing support and understanding the rights you have in your caring role. She channels her experience and knowledge of caring into her work, wanting to ensure that every carer knows that there is support for them, and how utilising that truly can make all the difference.
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