“It’s the final days of someone’s life. They don’t deserve to die in pain.” 

Content warning: This piece features descriptions of pain at the end of life which can be hard or upsetting to think about. You can come back to this content at any time. To talk to someone about how you're feeling, contact the free Marie Curie Support Line on 0800 090 2309* or email support@mariecurie.org.uk.  

Within five years of each other, my mum, Auntie Bron and Auntie Mary died. It’s just me and my sister left now. We have a very small family, so we did all the things a family would do apart from the physical care, although sometimes we had to do that too. 

Auntie Bron had bowel cancer. She had one successful operation for it, but it came back five years later and there was nothing they could do.  

Auntie Bron hadn’t wanted to go into a hospice, and we respected her wishes. But when we were caring for her at home, we had difficulty getting hold of her medications. My aunt was very near to the end and had the syringe driver on for a few days already. She was drifting in and out of consciousness, but without that continuity in that medication, she’d come around a bit and then be in pain.  

Then there was a day when the medication completely ran out. And because it was out of hours, there was no one to call. My cousin ended up having to drive a good 50-60 miles to get the medication and bring it back. Then the district nurse came out and changed the syringe. If my aunt didn’t have her family looking out for her, if she’d been single or on her own, what would have happened? She’d just have been left in a bed to die in pain. 

If I hadn’t had the experience with Mum in the Marie Curie Hospice, West Midlands, I probably would have thought it was just one of those things, and unfortunately can’t be helped. But because I could compare it against Mum’s experience, it felt dreadful and disgusting. 

 

With my mum, she was in hospital for three weeks before being transferred. It was our first experience of a hospice, and you automatically think they would be sad places and there wouldn’t be any laughter, but we found it completely the opposite. The people were all really nice. You could feel that the surroundings had been thought about – it’s not so clinical. There was someone there at every turn for literally anything that Mum needed, anything that we needed. It’s all there in the one place. 

My sister and I slept there during her last week, which made such a difference. Not only to Mum, but to us too. There was never a time when Mum was in pain, there was never a time when we had to say, "We’re not happy with this," or, "Can you do this?” There was never a time when there wasn’t someone available to talk to us, to explain what was happening and the different stages of what would happen.    

After Mum died, I was suffering quite badly and I couldn’t come to terms with it for the first couple of years. I decided to have counselling with Sue at the Marie Curie Hospice, West Midlands. I can’t say exactly when counselling started to change my outlook. It happened gradually. At first, we talked about Mum a lot, but over time I could go and see Sue, and we didn’t necessarily talk about Mum or even about grief. Sue knew the right questions to ask and she didn’t pressure me. The counselling helps you look at things in different ways and from a different perspective.    

Auntie Mary had carers come in to care for her three times a day. My sister and I were the ones that arranged everything, sorted everything out, did the shopping, paid the bills.    The thing that sticks out in my mind with Auntie Mary is the incontinence pads. She was bedbound and incontinent, and she couldn’t have a catheter put in. Incontinence pads are £40 a bag, then you have to wait for them to be delivered. We just couldn’t wait for the NHS pads, so we had to order them off Amazon. I feel lucky for our family – not everyone has disposable income like Auntie Mary did. If you have to spend weeks like that because you can’t afford the pads and you need more than your local authority will supply for free, what is your alternative? It’s just not right. 

Part of me thinks, well, that’s just how it is. It’s only when I look back and then compare with Mum’s care I think, "Hang on a minute – what’s going on here?"   

I often think about the people that didn’t have what we were able to give Mum, Auntie Bron and Auntie Mary. We fought so hard to get my aunts everything they needed, whereas with my mum, we didn’t have to do any of that. All that pressure was taken off us and we could concentrate on spending time with her. We didn’t have any of that worry.  

It’s the final days of someone’s life. They don’t deserve to die in pain. They should be comfortable and cared for, whether they live in Birmingham or Coventry. It’s the postcode lottery thing you hear a lot about. You just need everyone to be working to the same standard, wherever you are. It’s what we all vote for, it’s what we all pay for in our taxes. If it’s the last good thing that you can do for someone, looking after them while they’re dying, why wouldn’t you do it? 

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