Jess’s Story: Why I Run for Hospice in the Weald

By the time I was 19, I had lost both my parents. My dad died first, and then my mum passed away in May 2019. It sounds like a hopeless story – both my parents were unwell in devastating ways – but in many ways, it was full of love and beauty.

My mum, Clare, was just the biggest-hearted person. A nurse who qualified as a massage therapist before her diagnosis, and my dad always looked out for lonely people, really taking them under their wing. They were both kind and incredibly eccentric.

Mum started showing neurological symptoms when I had just turned 18. She was a nurse herself, so she didn’t want to admit what was happening. She had weakness along one side of her body, her speech became slurred, and she was displaying a change in her emotions. In April 2017, after tests in London, she was diagnosed with Motor Neurone Disease (MND).

Her condition deteriorated quickly. By the end of the summer, she couldn’t walk, and her speech was deteriorating – she was using an iPad to communicate. We were referred to Hospice in the Weald straight away. She had volunteered there years before, so she was comfortable being in their care.

Then, in September of that same year, my dad began experiencing falls. He was diagnosed with a grade 4 brain tumour in October 2017 and told he had three months to live. He then lived on for 10 months and decided to be cared for at home with support from the Hospice.

My dad, Giles , was such a huge character in Tunbridge Wells. He was often seen playing the ukulele in the street, just to show people that he could. He was obsessed with The Beatles. He had a real heart for people on the streets and ended up supporting a lot of homeless people emotionally and financially over his life.

With help from the Hospice, both of my parents were able to die at home. I was worried that this might change the atmosphere, but it didn’t. It was absolutely perfect and incredibly beautiful. They were comfortable, the whole family was with them, and they both passed peacefully.

I was only 18, caring for two parents with extremely complex needs, and I felt incredibly overwhelmed. But the Hospice was ‘for us.’ The nurses would feed my mum, so I could eat my lunch. It meant I could sit next to her as her daughter, not her carer.

One of the most powerful moments we had was during a therapy day at the Hospice. We were asked, “If you were a plant or flower, how would you like to be cared for?” My mum used her eye-gaze machine to type a poem:

I need lots of loving strokes, but not overcrowding.
I need inspirational music and no quarrels, no bitterness, resentments – just love in the atmosphere.
Food is very important for me; I love gorgeous homemade food. Not a sweet tooth – I like wholesome food and wine fed deep into my roots.
I need sunshine and beautiful colours.
My roots need to be deep and secure so I can dance freely in the breeze without fear.
I need fresh, pure air and I love it if I am by the sea.

It was such a beautiful way for her to express how she wanted to be cared for – something we hadn’t really had the chance to talk about before.

Hospice in the Weald became a real touchpoint for our family. People often think of hospices as places of sadness, shut away from the world. But that’s not what we experienced at all. It was a hub – a place where people were going through the same thing, where we found connection, and where we felt safe.

It’s not just a place where people die; it’s a place where people live, and where love can be fully expressed.

I looked at different kinds of runs and things I could do, and I actually couldn’t really think of a better charity than Hospice in the Weald to donate to and run for.

Running was not my favourite thing, but it’s been so worth it! I’m trying to do three runs a week and with every run my love is growing for the sport. I’ve now hit my 10K mark and now I’m training for hills.

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Come and join Jess at Hospice Run on the 21st of September and support families like hers.