Celebrating Caitlin: A life lived in technicolour

Celebrating the life of their loved one in a way that reflects that person’s special qualities often helps the bereaved find comfort at such a deeply sad time.

For the Kelly family from Devon, paying tribute to much-loved Caitlin, just 23 years old when she died, involved a final adventure that perfectly captured her independent spirit and zest for life.

This Hospice Care Week (10 – 14 October) in partnership with Hospice UK, we’re sharing Caitlin’s story to remember the inspirational young woman she was, to highlight the vital help that hospices and hospice care can provide to people of all ages, and to reveal the very personal part a ground-breaking transatlantic voyage played in her family’s fond and fitting farewell.

At the end of her life, in May 2021, Caitlin – who was born with cerebral palsy and had epilepsy as well was a visual impairment and learning difficulties – was looked after by St Luke’s, initially at University Hospitals Plymouth NHS Trust, then at our specialist unit at Turnchapel.

Caitlin’s father, Sean Kelly, said: “It wasn’t unusual for Caitlin to have seizures, but when she suffered a brain haemorrhage at home, we knew we were facing something different and very serious.

“The hospital teams – initially at Royal Devon and Exeter and then at Derriford in Plymouth – did everything they could for her, but despite a series of operations the reality began to dawn that her life was coming to an end.  When it was suggested it might be time to have a conversation with someone from St Luke’s, Dr Doug Hooper – a member of the charity’s team at the hospital – was there to talk things through with us.

“It was an incredibly difficult situation to accept because as a parent it’s always your instinct to fight on, but when he told us about Turnchapel, it felt like the best place for Caitlin to spend the final part of her life.”

So much more than simply a place to deliver expert medical provision, her family, including her mother, Jacqueline, brother, Cameron, and sister, Erin, describe the specialist unit as “an oasis of calm” in the most tumultuous of times.

Sean said: “After such a frenetic time, we welcomed the peace we found at the hospice, without the constant distractions of the hospital environment and the very necessary but stressful cacophony of beepers and warning sounds in the Intensive Care Unit. We decorated Caitlin’s room with her artwork, brought in her own pillows and familiar items from home and spent time reading to and just talking to her.”

It wasn’t just the tranquillity of our specialist unit at Turnchapel that made it such a haven for the Kelly family. They found solace in being able to lie down next to Caitlin on our special “cuddle bed”, which at the touch of a button expands from a single into a safe, comfortable double.

Sean said: “It was only afterwards that we learned the cuddle bed was donated in memory of a young lady, Chloe Hunn, who was close to Caitlin’s age when she was looked after at the hospice. Finding out it had been Chloe’s dying wish to have just such a bed so she and her boyfriend could cuddle – and that the family, together with friends and her local Cornish community, had clubbed together to posthumously donate it – made such an impact on us.

“The care and kindness of St Luke’s meant we had the time, space and even a certain serenity – in the midst of this most emotional of experiences – to say our goodbye to Caitlin, something for which we will always be grateful. We were grateful, too, for the support on hand, whether it was the St Luke’s nurses offering a cup of tea, a walk out in the garden or even a chat with the bereavement support staff who made themselves available, both during our time there and after her passing.”

In the week Caitlin was at St Luke’s, by chance Sean and his family, learned about a remarkable challenge, steeped in history, that brought to mind their daughter’s indomitable spirit. As part of celebrations to mark the 400th anniversary of the Pilgrims’ journey on board the Mayflower, from Plymouth, Devon, to Plymouth, Massachusetts, a 21^st century cutting-edge, fully autonomous ship, completely run by an IBM computer, was undertaking sea trials in preparation to set to sail – without a crew – following the same route across the Atlantic, collecting important scientific data along the way.

Photo credit: IMB / ProMare Inc

Inspired by Caitlin’s can-do attitude to life, the family – who have relatives in the USA, including Caitlin’s sister – got in touch with Mayflower Autonomous Ship’s co-developer, ProMare Inc, with a very special request.

Sean said: “Plymouth has historically been a point of embarkation and adventure.  We explained how much it would mean to us if a few of Caitlin’s personal possessions, including some medals, bookmarks but also a small teddy bear from Turnchapel, could make the transatlantic crossing on Mayflower so they could reach her relatives in the USA, and they very kindly agreed. After a circa three-week voyage, the trimaran arrived at its destination in the summer of 2022.  Caitlin loved adventures and, in a way, the crossing represented a great adventure in honour of that spirit.

“Our beautiful, happy and sometimes sassy daughter never considered herself to be less able than others. She was defined by her determination to overcome her disabilities and to live her life literally in technicolour. She was – and will always be – such an inspiration to us.”