Laurel Parker, from Eastwood, had been cared for by Havens Hospices from the age of ten years old after being diagnosed with a rare and progressive illness called Niemann Pick Disease, for which there is no cure. Laurel, who loved dancing and painting, died at Little Havens Hospice, as she had wished on the morning of Thursday 5th March 2015, she was 18 years old.
Laurel’s mum, Cara, explains,
“We knew Laurel would die, but there was no knowing when. Because we knew what the outcome would be, we discussed the best options for Laurel so we could all make the most of her life and we knew that we wanted Little Havens to be a part of the end of Laurel’s life.
“In the early days, Laurel had poor hand control, exhaustion and was in a lot of pain. We had respite breaks at Little Havens for a long time. It was essential. With Laurel’s illness, it was like living on a cliff edge. If anything else came along you would fall off. But Little Havens was there to pick us up. Just by being there you gained a broader understanding of life, meeting the inspiring families that also used the hospice. It helped to put your own issues into perspective.”
The illness progressed gradually until the summer of 2013 when Laurel’s consultant explained that she was terminally ill. By 2014, Laurel’s deterioration was rapid and her condition would change week by week.
“It was October when we made the decision to not treat any further infections with antibiotics or have any further stays in hospital. She would still have her pain and psychological medicine, but by that point it wasn’t a nice life for Laurel. It was the hardest decision we would ever have to make, knowing it would be her last Christmas.”
Little Havens use a ‘Spirituality Toolkit’ as a way to discuss what’s important to the family and child and to give them the opportunity to make their end of life wishes known. Before Laurel died, she completed this with a member of the Care Team and used it to plan her funeral.
“Everyone was to wear white or bright colours, and she didn’t want it to be sad. Laurel wanted to die at Little Havens – that was one of the things we did learn from her Spirituality Toolkit, and was a decision we had made together.
“Laurel’s faith was vital to her. She often became distressed during the last four months of her life, crying constantly where she couldn’t cope with her emotions. Laurel couldn’t speak to me about these feelings, perhaps for fear of upsetting me too much. But she did say she could talk to my sister and her husband. What we asked them to do was the biggest thing you could possibly ask from someone. They basically helped her prepare for death. They would visit twice a week to talk and pray. It was completely private. They used the Bible to think about heaven and what it would be like, which reassured Laurel. The light of God, Laurel’s faith would fill her up and bring her comfort.”
Laurel and her family spent the last days and weeks of her life at Little Havens where Laurel did all of the things she normally would, even swimming, and she also started a painting which she didn’t quite complete. Her sister Charlotte, who Cara and her husband Chris describe as “Laurel’s staunch advocate”, finished it after Laurel died and the painting now hangs on a wall in the family’s home.
“During the last four days at Little Havens, Laurel had so many visitors, it was manic! But it was what Laurel – and we – wanted. A member of the Care Team was at Laurel’s side 24/7, she was never left alone. They were amazing, they were our gladiators. They would do whatever was needed to protect us and they looked after every single person whom Laurel loved. Her death was everything we could have wanted thanks to Little Havens. Obviously it’s the most hideous thing you could ever have to face as a parent, but because of the hospice, her death couldn’t have been better.
“We have very happy memories of the end of Laurel’s life, we had great fun. In her last days at Little Havens, she lived as she had lived her life – surrounded by the people she loved.”