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Dying Matters Week – Katie’s Story

Dying Matters Week is an annual campaign to open conversations and grief, death and dying. This year, the theme is bereavement in the workplace. But what happens when you are grieving a death of a loved one, and your workplace is a hospice? Our Future Care Coordinator Katie Barrett shares her story:

In this blog:

“I have worked at St Barnabas House for 14 years, and up until a couple of years ago I was a nursing assistant. I now work as the hospice’s Future Care Coordinator, organising all the discharges from the IPU (in-patient unit), arranging funding for continuing care, or helping relatives find a nursing home place. If someone’s preference is to die at home, then I put everything in place for them to do that, with their loved ones around them.

After being on the IPU for so many years, I have a lot of hands-on experience of what hospice care means – the holistic side and the medical side. Even so, when my own mum received a late diagnosis of lung cancer during the COVID lockdown, my experience did not prepare me for the grief I would feel.

I had been speaking to the team here about my mother’s health and they were all very supportive of what I was going through. When she was finally diagnosed, about four months before she died, I was working on the in-patient unit, and my mum was phoning me all the time. I was caring for people with the same condition who were very ill – who looked like my mother, whose breathing sounded the same. It was very distressing – more than distressing, in fact.

My mum came under the care of St Barnabas and the Community Palliative Care Team, which meant we could care for her at home. I have a big family, but they don’t all live locally. Because my father had died some years previously, I took leave from work to look after my mum full-time.

We were supported by the Hospice at Home team. The doctors and the whole team were amazing – we had a lot of support. My mum was very cantankerous, and they were able to deal with her very well.

Because of my experience here, I could see that my mum was travelling a familiar pathway. I knew that my mum could feel that she had all this support from us, because I felt confident enough to help my sisters through her dying process. Although in some respects I felt I knew everything about what would happen, I also felt I didn’t know anything – in a way you don’t until it happens to you.

There are two other ladies here who went through the same process with me at a similar time. I was talking to one of them recently about how difficult it was seeing people at work who had helped me through such difficult moments. I might be walking down the corridor and pass the person who gave my mum the last rites, or see the doctor who cared for her. It’s hard because I just wanted to hug them. But obviously I couldn’t, because I was at work.

I was very grateful for everything St Barnabas did for me and my mum. But I found it very hard to come back to work – very hard. I knew that if I left it for too long, I might not manage to come back at all. Fortunately, the team here is very supportive. My mother’s name is in the book of remembrance, and I go to the chapel every so often to light a candle.

I have found I’m able to relate better, to understand what patients and families are going through. And although I wouldn’t say “I know how you feel”, because everyone’s journey is different, I do have some experience of the processes we put in place, and I know they work. I can give that reassurance.

I am lucky in that I was able to access the support of our bereavement team and our chaplain. In some ways I think it was easier for me working here, because the team around me talk very openly. They were very strong. They would talk to me when I wanted to, and they would leave me alone when that’s what I needed. And then when I was caring for my mum at home, I could ring and they would advise me, even if it was the middle of the night. When I came back, they didn’t smother me, but they gave me enough support to understand that if I was crying, I wasn’t crying because I didn’t want to be there. I was crying because I was grieving.

After a while, I began to feel more like myself. My mum used to walk on Worthing Pier and a few months after she died, I went to an art show with a friend. There was a beautiful drawing of the pier with the sun shining through its glass windows. I bought it for my sister to remind her that the sun is always there, even when its light is hidden by clouds.”

Two people having a cup of tea

Katie's self care tips

💙 Don’t become too insular in your grief. There’s always somebody who will listen. Talk to someone, even if it’s just saying good morning to a stranger.
💙 Take time for yourself. Go for a walk. I love music, but in the depths of my grief I found I couldn’t cope with it. Somebody suggested I try classical music, and that worked for me. Or watch some trash TV – I liked Say Yes to the Dress!
💙 Make sure you have a bath or a shower, brush your teeth. Get dressed, have a good cry when you want to. Talk about the person, even if it's boring the hell out of your friends or your partner – it won’t be forever.

About Dying Matters Week

Dying Matters Week (8 May - 14 May 2023) is an annual awareness campaign set up by Hospice UK. It's a time where we're encouraged to get talking about dying and breakdown the taboos around the subject of death. There's lots of events taking place up and down the country - from Death Cafes to workshops- that you can get involved in.

Find out about Dying Matters

Resources and support for dealing with grief

If you’re known to the hospice already (if a loved one is currently being cared for by us, or if a loved one was previously cared for by us prior to their death), then please get in touch with our Patient and Family Services Team. We have a team of qualified councellors and social workers who are able to support you emotionally or practically. We can also offer you spiritual support.

Resources to help you

There’s other charities that help with grief and bereavement – as well as other Mental Health charities that can also provide support: