There aren’t enough words in the world to describe the unending gratitude we have.
I find talking about my mum really difficult.
It is seven and half years since she died. The tears don’t flow so frequently, but the pain persists, as raw as ever.
I envy those people who can ‘remember the good times’, who can openly laugh and joke about memories of someone they have lost, retell stories without breaking down. I can’t. I have slowly come to the conclusion I may never be able to, and I think I’m fine with that.
My dad, who didn’t cope as well as he thinks after my mum passed, always says ‘she deserves my grief’. As true as that is, I recognise how unhealthy it is not to open up, to engage in that grief head-on. I know I probably need to do that, and I have noticed of late signs of my avoidance beginning to catch-up with me (though there is part of me that evades any meaningful catharsis for fear of losing a bit of my mum).
Generally speaking we are all pretty bad at talking about death, and dying. That has had consequences beyond our own individual well-being. Our refusal to confront the end of life not only makes it a much scarier place when we are forced to, but for some it can make it a much more uncomfortable one.
My mum, Diane Hewitt, was 51 when she was diagnosed with stage-three breast cancer. She lived with it for five years. She endured countless rounds of gruelling chemotherapy and radiotherapy, but managed to live largely a full and active life alongside her never-ending treatment, free of debilitating pain.
At the beginning of 2014 her condition deteriorated fast. The final few days of my mum’s life were beyond tough. Her bravery knew no bounds, but bravery is not enough in the face of cancer. She was dying, and for a short-period of time she was dying in pain.
That is when hospice care came to my mum’s rescue. Hospices can’t save you, but they save you from the worst of what dying can bring. They saved my mum from dying in pain, and they saved my mum from dying in a hospital.
There aren’t enough words in the world to describe the unending gratitude we have for the palliative care nurse who came to our house from the local hospice and made my mum comfortable. It meant she could stay in her own bed, surrounded by her family.
Until that day, I was wholly ignorant of the transformational work of hospices. To me, they were nice places where old people went to die.
My mum was 56 when she died. I cannot talk about that day, I struggle to even think about it. What I can say is I know that day could have been much, much worse if it wasn’t for the work of hospices.
"My mum died with dignity, at home, holding my dad’s hand, because someone somewhere held a coffee morning, or donated some old clothes to their local charity shop, or ran a marathon."
End of life care in Britain is among the best in the world. They provide world-class palliative care, not just in the final days of a person’s life, but for those with life-limiting conditions often for many years.
Hospices are not places where people go to die, for many they are places where people to go live - for respite care, physiotherapy, rehabilitation, pain and symptom control, physiological support, financial advice.
Our experience with the hospice was short. Some rely on them for many years, their conditions incurable but manageable, and their lives are lived better as a result.
All this care though costs, a lot. Nearly £1 billion a year. The majority of that money comes not from the government, but from fundraising. Individual hospices have to raise millions of pounds every year to pay for world-class end of life care. In England, on average less than a third of hospice funding comes from the state.
My mum died with dignity, at home, holding my dad’s hand, because someone somewhere held a coffee morning, or donated some old clothes to their local charity shop, or ran a marathon.
The cost of end of life care is rising and rising, as we live for longer with more complex conditions, but the money isn’t keeping up. Most hospices are fiercely independent organisations - they were born that way, and wish to stay as such. They do not want to be fully incorporated into the National Health Service or become wholly state-run and state-funded. They want to remain charitable organisations, their work partly-funded by the community they care for whose members are inspired to run marathons and climb mountains and bake cakes and donate to their shops.
Fundraising though can only go so far, and most hospices are finding it harder and harder to raise what they need. They need more sustainable funding from the government to continue their incredible work.
Part of the problem comes from a societal ignorance of exactly what hospices do, how they do it, and how many people they help. Our inability, our refusal in some instances, to talk about dying makes it that little bit harder for those amazing people and organisations who do it every day.
This year, Dan and his wife Chloe ran the London Marathon for Hospice UK in support of hospice care nationwide here. Find out how you can support our work through our challenge events.
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