Every year Dying Matters Awareness Week is held in May to encourage communities, individuals and organisations to come together and open up the conversation around dying, death and bereavement.
Sisters, Linda Buckley (60 from Leigh on Sea) and Alison Thorpe (54 from Colchester) are sharing their experience of why we should talk about all dying matters, because they know first-hand the importance of having conversations about end of life and making choices matter, as they did with their mum Josephine Gunnee.
Josephine had a very positive outlook on life, grasping every opportunity, and being diagnosed with a rare cancer didn’t stop her from going out with friends and spending time with her family.
In 2019, Josephine shared her thoughts about dying: “The doctor told me how long I might have and I thought right, I don’t want to die at home, I don’t want to die in a nursing home; I want to die at the hospice. So I just rung them up and more or less I said, can I die at your place?
“I’m 84, nearly 85, and I’d give up my life now for somebody over there [at the hospice] that’s younger, without a doubt, because I’ve had a good life. That’s not to say I don’t want to carry on having a good life but you know life ends, so let it end happily.”
St Helena Hospice supported Josephine and her family, providing physical and emotional support at home before she was admitted to the hospice for her last days, as she had wished, and where she died in January 2020.
Linda said: “The hospice was just out of this world. It never felt a sad place to be although we all knew what the final outcome would be. There was always much laughter and chatter amongst us all.
“It was very sad when mum left her home to go in the ambulance. We could see her face looking up at the building as if to say I won’t be coming back this time. But in another way, it was comforting, knowing now that it was mum’s wish to go to the hospice.”
Josephine had discussed her wishes with her family early on because she wanted everything to be as straightforward as it could be for them after her death.
St Helena Hospice encourages everyone to talk about death and make a record of their preferences by completing the ‘My Care Choices Record’, which details the care they would like to receive in the future, including if they wish, their priorities for care at the end of life.
Whilst Josephine was at home she had open and honest conversations about the stages of what would happen and what she wanted to happen with her Hospice in the Home clinical nurse specialist, Josh, who she shared a strong bond with. By the time Josh went through the My Care Choices Record, the sisters had no doubt what their mum hoped for.
Alison said: “Josh was brilliant. He really was our one in a million. He was honest and supportive, especially in guiding us when things deteriorated quickly, and ensuring mum’s plan was implemented. She could talk to him and tell him everything.
“Mum knew what her wishes were so putting that into a book wasn’t a problem. We did it as a family. Mum just had everything organised. She said she’d rather be in the hospice knowing that she was being looked after so the onus wasn’t on me and my sister. It was what she wanted.
“Having it all written down was helpful because in the emotion when the time came, things for mum happened so quickly.”
When the time came, Josephine was admitted to the hospice. Once she had settled in and been made comfortable, Linda and Alison knew their mum was feeling safe and looked after, so they were able to relax and enjoy the special moments shared together. One of their precious memories is of their mum feeling the fresh air on her face in the hospice garden.
Linda remembered: “She was quite poorly and it took the nurses quite a bit of time to get her up and dressed to make sure she was warm and then into a wheelchair, but Mum was determined she wanted to do it.
Alison added: ” We went and overlooked the pond and mum closed her eyes and there was a lovely smile on her face. I don’t know what she was thinking and remembering but that meant an awful lot to her.”
Dying Matters Week highlights that there is no right or wrong place to die; it will be different for everyone. But it is important for families to think about it, to talk about it and to plan for it.
Josh Wilkins, St Helena Hospice clinical nurse specialist, said: “Most of what we see is a good death. We believe a good death is where a patient dies where they choose, where they feel most comfortable, surrounded by all the people and things they love.
“We want people of all ages to be in a good place when they die – physically, emotionally and with the right care in place – that’s why the My Care Choices Record is so important. Talking about death won’t bring it closer – but sharing our wishes well in advance make it easier for our loved ones when we do reach the end of our lives.”
Find out more about My Care Choices