Dying Matters Awareness Week: My experience as a Rose Volunteer

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Dying Matters Awareness Week 2021 runs from 10 – 16 May. This year, the movement wants to focus on the importance of being in a good place to die. 

The coronavirus pandemic saw an unprecedented number of people pass away in hospitals without the comfort of having their loved ones with them. Raise has worked hard to create the End of Life Care Volunteer Project and we now have a number of Rose Volunteers working in our wards to offer company, comfort, and companionship during dying patients’ final hours. 

Eric Johnson was the first of a group of Rose Volunteers after the pandemic – here, he shares his story.

In September 2018, I lost my beloved father at Watford General hospital. He had Parkinsons Disease and Dementia. It was a double blow – I had been losing him due to his illness for several years and in the lead up to his death, I cherished every last precious moment I had with him before he passed away. Up to that point, me and mum took turns to feed him lunch, we held his hand, we told him every day how much we loved him. 

Looking back during the pandemic, it broke my heart that so many families were robbed of the precious time with their loved ones. The Covid restrictions meant that families were robbed of their final moments – and with many end-of-life patients unable to receive visitors, many sadly died alone. 

I just couldn’t accept that. 

It didn’t take a lot of persuading for me to become a Rose Volunteer, in fact I was delighted to be the one of the first such volunteers for West Herts Hospitals NHS Trust to take part since the beginning of the pandemic.

Following in-depth, specialist training, I went to work to support the medical teams and families unable to be at their loved one’s bedside. The patients I see are often a few hours or days away from death. They’re usually unresponsive – but I know they can hear and feel. I talk to them about the news, the weather that day, I comb their hair, give mouth care and hold their hands. Some slip away in my presence, others pass during the night after my visit.

But importantly, they don’t die alone. 

It’s a privilege and an honour – and the role has not only expanded my horizons, but it’s also allowed my very personal experience to help others.

Rose volunteers are unique roles like no other. If you are interested in becoming an end of life care volunteer, please contact our coordinator: Deborah.beard3@nhs.net

Here’s what other Rose Volunteers said about the role: 

A lovely 86-year-old lady was resting peacefully with a photo of her and her husband on her chest. On her pillow was a ‘shared heart’, one of which stays with her and the other is to go to the family. I stayed with her, provided mouth care and stroked her forehead. She took her last breath with me by her side and it was an honour and a privilege to be there, knowing that she didn’t die alone.

Deborah

End of life care volunteer coordinator

I have been volunteering for almost a year now in different roles. I chose EOLC because in the last year I heard so many stories of people being alone and family members worrying about them. It made me want to do more so when this role came up, I decided to join the team. Jane was incredible when it came to the shadowing, it was like starting a new job, first day nerves but they soon went. Debs has been amazing, friendly and very organised around training and keeping us all updated. I see this as a valuable service and if anything, I feel quite humbled and grateful to be part of a fabulous team. This role and others I have done over the last year has truly changed me for the better. Mentally it has got me through a very tough year. So, thank you!

Helen

Rose Volunteer

I asked to be involved in palliative care because I wanted to help. I knew if I were in that position, I would like someone to talk to me, or just be there to listen. The EOLC program at Watford General provided that opportunity. Highly trained staff walked me through, step by step, what to expect and how to handle various situations, offering loads of onsite support. I’m grateful to be part of the team, as it is truly a privilege to be here.

Joe

Rose Volunteer