Ahead of the upcoming Advent Carol Service at Lincoln Cathedral, Sarah reflects on the care her husband Julian received from St Barnabas, and why the cathedral has become such an important place of comfort and connection for their family.
Sarah says: “Julian and I met doing amateur dramatics. He was always front of the stage, and I was always back of the chorus. He was a kind and self-effacing sort of man – I miss his wisdom every day.
“A lot of what Julian was passionate about has been passed down to our children. So, Isaac is very keen on football and Max is very keen on performing. Both halves of his interests have been represented in his two youngest sons.”
Julian was diagnosed with progressive supranuclear palsy in July 2020, a progressive neurological disorder that affects balance, movement, vision, speech and swallowing, for which there is no treatment nor cure.
Sarah explains: “Julian was diagnosed during lockdown, so we had to narrow our horizons and be very much home-based. And that’s predominantly how it affected us for the first little while of his illness. His deterioration was then quite rapid over a period of only a few years which impacted our family life enormously as Julian needed full time care.
“The boys were classed as young carers. I was unable to go out for work or really leave the house for any length of time. St Barnabas made such a difference to our lives. They allowed Julian to live independently, with dignity, at home which was vital to his wellbeing.”
During the early stages of Julian’s illness, the family received visits from St Barnabas in the comfort of their own home. Even though the Wellbeing Centres were closed due to Covid-19, St Barnabas nurses were still able to visit Julian and offer services like massages and reflexology. Sarah and the boys also received counselling services which were provided by St Barnabas and a local children’s support group.
As the disease progressed, a Hospice at Home nurse visited Julian and the family more regularly, offering personalised and expert care.
Sarah continues: “Having a St Barnabas nurse come around was a real lifeline for us. Sue was great. She just helped us with all the problems we had. She made the world of difference to Julian and to the family.”
Towards the very end of Julian’s life, he spent three weeks in the St Barnabas Inpatient Unit on Nettleham Road, which is where he died.
“They helped him die with dignity, which would have been so important for Julian. It was obviously a dark time, but St Barnabas supported him physically and emotionally to make his last few weeks comfortable. He was looked after so beautifully by everyone at the IPU – they became our extended family.
“Being able to hand over the full time burden of care to this marvelous team, made me feel much more like his wife again, rather than his carer. What a wonderful gift to have in those last three weeks.”
Discussing the upcoming Advent Carol Service at Lincoln Cathedral, Sarah says: “Julian was so proud of our connections to the cathedral, and it has been a real home to our family since we moved to Lincoln. Both boys have been choristers, I work here, and Julian worshipped here.
“It’s a really fitting tribute for him, and for us, to see St Barnabas come together with the Cathedral for this service.”
Enjoy an evening of carols sung by candlelight at Lincoln Cathedral on Saturday 29th November at 6pm.
Marking the beginning of Advent, this special service begins the countdown to Christmas with traditional Advent carols, hymns, and readings. Held by candlelight, the evening will symbolise the journey towards the light and hope of Christmas.
Sarah explains: “Coming to Lincoln Cathedral is a wonderful experience – it’s the most beautiful building. It’s full of the most amazingly warm and welcoming people. And how better to start the Christmas season, than a service that celebrates the best of life and St Barnabas.”
Held in partnership with St Barnabas Hospice, this cathedral service is open to all and free to attend. A collection will support the hospice, raising vital funds to continue providing compassionate palliative and end-of-life care across Lincolnshire to patients like Julian.
Although the event is not ticketed, we’d love to know if you’re planning on joining us. Discover more and let us know here: Advent Carol Service, by Candlelight – St Barnabas Hospice