Scott Gillespie sadly lost his beloved father, Andy on 1st December 2021.
Andy Gillespie, a highly respected, former Estates Manager at Salisbury District Hospital (SDH), sadly came under the care of Salisbury Hospice in November 2021, after being diagnosed with Creutzfeldt-Jakob Disease (CJD). CJD is rare and fatal condition that affects the brain; it has devastating effects caused by rapidly progressing brain damage, including the loss of mental cognition and physical co-ordination. Scott reflects upon his dad’s diagnosis stating, “It was very unexpected.” Scott describes his dad as being extremely fit, having participated in around 20 marathons each year, with his last being the Atlantic Coast Challenge.
After a family holiday in Cornwall, Andy noticed that he had a ‘fuzzy head’ and the family thought it was best to get checked over after further symptoms like memory loss began to present. Following tests and discussion with Southampton Hospital’s Neurological Team, Andy was referred to see a specialist neurologist from Edinburgh, Andy’s hometown. Consequently, the CJD diagnosis was made, (although this cannot be verified until after death). Andy came home. His wife Lynn cared for Andy and regular physiotherapy was conducted at home. Understandably, Andy became immensely frustrated with simple daily tasks as his illness progressed.
Andy died just 3 weeks from diagnosis. Scott talks emotively about how incredibly hard it was to witness the rapid decline of his once fit and healthy father – with Andy’s symptoms worsening by the day. Overnight, Andy lost his ability to move limbs, swallow and subsequently talk. The family struggled with Andy’s progressing condition, and found that keeping him comfortable was increasingly more difficult; causing a lot of distress for both Andy and the family – all of whom were still coming to terms with the diagnosis and the rapid decline of Andy’s health.
Andy spent a total of 11 days at home once discharged from Southampton Neuro Ward, to SDH Farley ward. The Hospital Palliative Care Team (part of Salisbury Hospice) visited Andy whilst he spent his time in Farleigh ward before he moved across to AMU.
Andy was moved to the hospice inpatient unit following a referral from the Hospital Palliative Care Team, and Scott says that having his dad in the hospice was such a relief; in his words, “You couldn’t fault the staff on the hospital wards, but they didn’t have the knowledge and understanding of dad’s condition.” It was hard for Andy and for the family to relax knowing he was distressed and not comfortable,” He continues on, “as soon as dad came into the hospice everyone was instantly relieved. It was like a weight had been lifted”.
The hospice managed to get Andy’s pain under control and to Scott’s surprise offered additional support to the family. Lynn and Ryan, Scott’s brother, received treatment from the complimentary therapies team, and Lynn and Andy were the first couple to use the hospice ‘Cuddle Bed’. This allowed them to rest together, with Lynn even nodding off and managing to get some much-needed sleep. “To have use of the cuddle bed was a huge thing for mum”. Scott said that as a hospital employee his dad always worked to prioritise the hospice – being a huge advocate for the care it provides, and believed it was, “meant to be” for him to die there. The family could not fault the support that Andy and they received during the short time he was there, and would especially like to thank Ward Sisters Carol and Hayley for their kindness.
When the family received a phone call from the hospice to inform them of Andy’s death, they were there within minutes. Scott was surprised to find his dad lying peacefully, with a single white rose laid upon him. He appreciated the efforts of the hospice team to present him this way and their readiness to meet and comfort the family upon their arrival. The white rose meant so much to the family that Lynn and Scott both decided to plant some in their gardens as a tribute to Andy.
Two months after Andy’s death, Scott received support from Rob, our Hospice Social Worker, from the Bereavement Support Team. Scott said it was very difficult at first, to talk about his grief but with more sessions and Rob’s guidance it became easier. He credits Rob and the team with the progress he has made, allowing him to talk about his dad and remember all the good times. His fondest memory of his dad was from his wedding day, Andy was dressed in a traditional Scottish kilt and was beaming with pride the whole day. It was there he stated how proud he was of his son.
The family now support Salisbury Hospice Charity wherever possible in thanks for the care they received. They play the Hospice Lottery weekly, and every time Scott, who also works at SDH, empties the waste at the hospice, he uses the contactless donation machine in reception. “You just can’t fault the hospice, there’s just nothing bad about them”.
Andy was an inspirational man, who loved his family very much, including his two westies, Angus and Rory. He was a well-respected colleague, and a friend to the hospice who will very much be missed.
The wider hospice team would like to thank Scott for his ongoing support and his bravery in sharing this story as well as his wonderful memories of his dad, Andy.
If you would like to share your experience of the hospice, please email katie.h@salisburyhospicecharity.org.uk.
