Sarah Jones was just 46 when she first experienced the signs of what she at first believed to be stress.
As a result, she decided to leave her career in banking and instead give her time as a volunteer at our shop in Crookes and spend more time with husband Gareth and sons Lewis, who is 22, and 13-year-old Euan at their home in High Storrs.
What neither she nor her family could have known then is that today she would be a St Luke’s patient, having been diagnosed with both dementia and Motor Neurone Disease, conditions that have taken away the life she knew.
It is estimated that Sarah is one of only 700 people in the UK have the dual diagnosis, which has left her with virtually no memory, made her susceptible to dangerous infection and has severely affected her ability to eat, with choking therefore now a daily hazard.
“We first saw signs when Sarah was 46 and I look back and think there might have been something even before that but you just dismiss it as tiredness or something like that,” says Gareth.
"The dementia diagnosis came first and at the end of 2023 we found Sarah had Motor Neurone Disease too and at the beginning of this year it was suggested we should be in touch with St Luke’s, which is when a consultant and community nurse came out to see us and explain how they would be looking after us.”
Regular home visits by our Community Nursing team were put in place, along with an extensive care package but in July this year Sarah succumbed to Covid and pneumonia, leading to a period in hospital, with Gareth sleeping on the floor by her side every night.
Increased bouts of meal time choking added to Sarah’s problems, which finally saw her admitted to the St Luke’s In Patient Centre.
“To be honest, Sarah having both MND and dementia is like a marathon where you don’t know where the finish line is but the support we have received from St Luke’s, both at home and on the In Patient Centre, has meant so much to us,” says Gareth.
“It would have been too much to handle at home – medically it wouldn’t have been safe for Sarah and emotionally it wasn’t good for the boys.
“You feel protected basically and one of the things I have realised is that the more you open up, the more support you get.
“Everybody has been so good to me – I try to stop most nights as well as being here during the day, every day, for Sarah’s well being and if it wasn’t for the boys being at home I’d be here every night too.
“It’s hard to open up sometimes and you don’t want to admit you’re struggling but thanks to St Luke’s I have realised the benefits.
“The St Luke’s team – the medical staff, the chaplains, the social workers - have support our sons and been really good with them and explained exactly where we are.
“There is a feeling of love and protection and you do feel embraced by the care you receive.
“My original wish was to have Sarah at home as long as we could, knowing that St Luke’s was here for us and that they tailor the care to the person.
“We don’t know how this will end or when it will end but we do know that St Luke’s are there for us.”