Helen Brewerton, Head of Community Services at Royal Trinity Hospice, blogs on the first National Day of Reflection, a day to come together to reflect on our collective loss, support those who've been bereaved, and hope for a brighter future

Photo of Helen Brewerton, Head of Community Services at Royal Trinity Hospice

"As I reflect on the past year and consider how much has changed for me personally and professionally, I feel proud that I am able to sit here and write this.

When news of COVID-19 started hitting the UK, it was difficult to envisage how it would develop and what (if any) impact it would have on me personally, until it starting directly affecting us at the hospice.

March 2020 seems a long time ago in some respects, but conversely at times it feels like only yesterday.

"The urgent need to transform a service could have been a logistical nightmare. However, not unlike the atmosphere of calm you find when you walk into the hospice, the early management meetings about how we needed to adapt the services to keep patients, visitors and staff safe were calm and organised."

There was a strong feeling that ‘we are all in this together’ and this was a team effort, which really helped to avert any individual panic. I look back now and I can’t help feeling pride in what we’ve achieved. Despite many reservations that it wouldn’t be possible to provide expert support and symptom management virtually, we have and we continue to.

Until 2020 I was in the privileged position of never having experienced a significant personal bereavement. Little did I realise back in March, what life events would unfold during the pandemic which were not a direct result of it, but became complicated because of it.

In April, my 81 year old father died. It was not wholly unexpected, in fact he had been bed-bound and resident in a nursing home for 5 years with Dementia. My sister and I were permitted to visit him and sat for a day and a half in full PPE watching for any change. He stabilised and with the innate difficulties of prognosticating in someone with such low level function, I returned to work and he died peacefully the following week.

I arranged his funeral which back in April, could only have 10 mourners. It was difficult deciding who to include or exclude in the numbers with such little flexibility so we went with his children and grandchildren which felt right. The day went well, but it was strange not having a ‘wake’.

"My Dad loved playing golf when he was fit and was well known at Maidenhead Golf club. The 19th hole would have been a very appropriate venue to pay our respects and ‘give him a good send-off’. Instead of that, following the cremation, we all went our separate ways in our cars and that felt unfinished. His ashes are yet to be scattered as we haven’t been able to meet as a family or travel to do this."

When people heard that my Dad had died, they assumed he died of COVID-19 as he lived in a care home and it was during the first wave. I suppose I felt relieved he hadn’t, but it still had obvious implications on family visiting when he was dying and his funeral.

Towards the end of 2019, my 76 year old mother who we always described as being fitter than most people half her age, was diagnosed with cancer of the oesophagus. She underwent radical chemotherapy and radiotherapy treatment which finished around Christmas 2019 and despite some treatment-related side effects, she coped pretty well. Subsequent CT scans and oncology follow-up appointments repeatedly revealed good news. No signs of metastases and no signs of residual tumour. My Mum considered the pandemic and resultant lockdown very inconvenient. She was just starting to get her energy back in early 2020 and wanted to go and see friends, go to the shops herself and get back to going on group walks and playing lawn bowls with her friends. Instead of that she had to shield.

Almost out of the blue in November, She was admitted to hospital. When she called me to say that the cancer had spread throughout her abdomen and she was in bowel obstruction, I knew this was not good news. I wanted to rush down to Cornwall but I couldn’t. She couldn’t have visitors because of COVID-19. She underwent palliative surgery and the plan was to discharge her home. I already knew that whatever the outcome, I would be going to Cornwall to look after her. I wanted her out of hospital as soon as possible so she could see her family and be in the comfort of her home. I took leave from work and got ready for the job at hand. My sister joined me a week later.

"I have always considered it to be such a privilege to support patients and their families at such an intimate and personal time of their lives. However, I knew that ahead of me was the most important job of my whole ‘career’, providing end of life care to my Mum."

People have asked me how it was and I would describe it as both the easiest and the hardest of jobs. Watching someone you love so much deteriorate daily and almost disappear in front of your eyes is so hard, but for me this was the most important job of my life. It had to be right. My experience and training helped me to know what to do in order to provide the best care for my Mum but I was always her daughter first and her nurse second. The community nursing team was amazing, their care was delivered with compassion and empathy. They always checked in with my sister and I, making sure we had what we needed. I got to see and admire how well their service was coping during the pandemic.

Four weeks after my Mum was discharged from hospital, she died at home on her sofa. This was where she wanted to be, and where me and my sister had enabled her to be. Her funeral was a different affair to my Dad’s. By December 2020, the number of people allowed at a funeral had increased to 30, but there was still no ‘wake’ as by then we were in this current lockdown. We all drove our separate ways afterwards. However I think by then, we were resigned to that and we paid our respects in our own ways. Again, we have not been able to scatter her ashes yet because of COVID restrictions.

So, I am no longer in that privileged position of being nearly 50 and still having both my parents alive. They have both died during this pandemic. Both have died in different ways, from different causes. Neither from COVID. Becoming a ‘carer’ has given me an experience which I am determined will be utilised in my role as a head of service at Trinity. Not only do I now know what good care looks like, I know what it feels like.

"I want to make sure that families of the patients we care for always get the best of what we can offer. Working at the hospice and being surrounded by amazing colleagues who sent me love and best wishes during my personal bereavements and experiencing them at a time when there has been mass bereavement because of COVID-19 has made it so much easier to deal with."

That feeling that we are all in it together has rippled through my personal life, my work life and the outside world. It’s a comfort to know you aren’t the only person experiencing loss and also to understand that having heard many stories of deaths during the COVID pandemic and funerals with no mourners, my experience could have been so much worse."

Find out more about the National Day of Reflection on the Marie Curie website