Nicky reflects on the support her husband Gilson received: “I don’t think we could have walked this last leg of Gilson’s journey together without St Barnabas.”
After first meeting at work in 1990, the couple started dating in 1993 and were married for 32 years.
Nicky says: “For me, it was love at first sight. He was this tall, blonde, 6-foot man, and just gorgeous. We went on our first date in January, and by November that year, we were married. A real whirlwind romance.”
Gilson rose to fame in the 1970s as drummer in rock band Squeeze, before going on to perform with the Jools Holland’s Rhythm and Blues Orchestra until 2024.
As well as a musician, he was known for his artwork, painting and sketching portraits of many of the artists he performed with, including Eric Clapton and Amy Winehouse.
Nicky continues: “He was a professional drummer all his life and he was also a portrait artist – a very creative person. He was a true gentleman. That’s the one word that everybody would use to describe Gilson, he would always open the door for you, a gentle, lovely guy.”
Gilson had COPD (chronic obstructive pulmonary disease), which led to him retiring from work in 2024, as it was becoming too difficult for his breathing. A few months later, Gilson visited A&E after a fall at home, and it was found that the oxygen levels in his blood were not right.
Nicky continues: “He was then diagnosed with ILD (interstitial lung disease), Pulmonary Fibrosis. Most people that are diagnosed with that have a life expectancy of 3 to 5 years, but Gilson was told that it was most likely going to be 6 months to a year for him.
“We both knew his lungs were not in good shape because of the COPD, but this was a huge shock.”
The sudden diagnosis changed everything for Nicky and Gilson. They went from a life of travelling across the country to becoming largely housebound.
Nicky adds: “St Barnabas came in straight away – as soon as we came home from the hospital, they were there. With all sorts of care, from the medical side of things with help and advice, to wellbeing support for Gilson because he was very fearful of dying.
“They helped with advance care planning, especially around doing the ReSPECT form. He also received counselling and spiritual support to help with his fears of what he thought the end would look like for him.”
Sonya, a Health and Rehabilitation Support Worker, provided additional support as a Spiritual Care Champion. Spiritual Care Champions offer support alongside the care they would usually provide, creating a safe space for patients to explore what brings them strength, comfort, and peace.
Sonya says: “As a spiritual champion, I’m there to listen, to support, and to help and guide people with whatever they need. If I can make that one person feel a tiny bit better, I’ve done my job. And in this role, I feel I am able to do that. Gilson was very fearful about dying and what that would look like for him, and we were able to talk this through together.”
Nicky adds: “They were also there for me. Sometimes the nurses would see Gilson on his own, and sometimes they would see us as a couple. It meant that I could talk about how I was feeling too because I’d become a full-time carer overnight. My world had suddenly shrunk. So, there was a lot of support for us both, and they always asked how I was, which was lovely.
“The care was very loving, non-judgemental and positive and I felt that I could say anything and that would be okay. It was invaluable. I think for us as a couple, we would have really struggled without the support we had from St Barnabas.”
Nicky says: “The one thing that stood out for us were the weekly visits from Sonya, who was a pure ray of sunshine. It was such a joy to open the front door each week and find her smiling face there.
“She was such a good listener, and would listen to us both talk about whatever was going on that week – and it was very different from week to week. She didn’t judge which meant that we felt comfortable sharing our feelings with her. It would have been difficult navigating all our emotions without her support.”
While many people knew Gilson as a professional musician, Nicky remembers him as a gentle, loving husband who lived life with kindness and creativity. With the support of St Barnabas, they faced the final few months of his life together.
St Barnabas is a local, independent charity that supports over 12,000 people across Lincolnshire each year. Their aim is to enable people to live as fully as they are able for however many days, weeks, or months they have left.
