Your stories - Phoebe and Denise

My mum asked outright, ‘is she dying?’... they said, ‘things don’t look good so maybe get the family here’... they couldn't say it.

Phoebe

My beloved auntie died last week. She had advanced breast cancer and was only diagnosed eight weeks ago. We all thought we had more time as she was about to start four months of chemotherapy this week. 

Her name was Denise, but everyone called her Jummie. I grew up living next door to her. She was literally just like my second mum, really. She was so special. And she spent her whole life dedicating it to others.

Jummie was always just so positive. Her outlook on life was just amazing. Just such an inspiration to me and all my family. That was her in a nutshell, really - her whole life was just about having fun.

Jummie died eight weeks after her diagnosis and we really did make the most of precious time together as a family. Her quality of life in that time was also quite good and we hold such special memories. But around the time she started to deteriorate things went downhill so quickly.

She was admitted to hospital with a reversible infection, but I saw her soon after and she was showing some red flags of deterioration. She was in a lot of pain. 

It breaks my heart thinking that it could have been managed better. But there were positives as well…we're just grateful that we all got to be there with her.

Phoebe

When I got to the hospital I didn't actually recognise her. I asked, ‘I'm looking for Denise Morris’. And I didn't know it was her. She’d lost a lot of hair. She was slumped over to her side sitting upright. It breaks my heart talking about it.

But she was sitting upright all night in an A&E chair trolley, with no pillows or anything. And when my mum got there that morning, she asked for a pillow and she'd had no water or anything next to her. When my mum gave her some water, she gulped it down and must have been so thirsty. Jummie was wincing in pain. And she’s not the sort to say that she's in pain. She looked very uncomfortable and my mum found it difficult to reposition her on her own.

Overall it was about a 20 hour wait in A&E until she got a bed. 

Things started to change. And it didn’t look good. Because of Covid we had to take it in shifts initially. We couldn't all be in the room with her at the same time at the start of her hospital admission.

She was showing clear signs of dying and we wanted her to be as comfortable as possible. There was no documentation from the palliative care team but the doctor was very helpful when we requested that they came round to discuss this. We were so grateful for his support. 

I knew she was dying from what my mum was describing on the phone to me, but I wanted it confirmed so I requested that my mum ask outright, “is she dying?” The consultant said, “well things don’t look good so maybe get the family here”. I was saddened that they could still not directly tell us. I had to be the one to initially discuss this. I’m sad this had to come from me and not the team involved. 

Although Jummie had wanted to die at home, it wasn't safe for her to go home at that point because she was actively dying. So we were with her at the hospital - they let us be there and put photos around her room. All her family were with her - we were allowed to be with her.

We did have one healthcare assistant who looked after us all so well, but there was poor communication between the hospital and palliative care team. They put a DNR (Do Not Resuscitate) in place without communicating with the family. I know they didn’t need to communicate this, but it would have been good to have had a discussion with us. They must have thought she was rapidly deteriorating but they weren’t saying this to us. 

I had to ask for morphine. But then her symptoms were better managed and it was very peaceful after that. I think I try to block some parts out a bit. The fact that just seeing her there [in hospital] all night without any water or, you know, any pillows…

It wasn’t a good death... it’s going to stay with me forever.

Phoebe

My auntie did not want to die in hospital but sadly this happened. We felt grateful to be with her in her final hours and showed her so much love. The hospital staff showed great compassion to allow us to be with her, however I felt that it wasn’t a good death and it’s going to stay with me forever.

In my eyes, I just feel like it was quite a traumatic experience for me and my family - what we had to go through in terms of watching her deteriorate and the lack of symptom management and communication between the professionals around her. 

I hope that by sharing our story, it will help others too - so they know what to expect when somebody’s dying and that it’s OK to ask these questions and to say the dying word. And also to help health professionals to open up as well and talk more about death and dying.

I want to raise awareness of what people are still going through. There’s still so much that needs to be done in terms of end of life care and how we talk about death and dying. I feel so passionate about that.