Joe is a chatty, outgoing 26 year-old. When he was younger, he was very adventurous and loved skiing and going out on his bike, even completing the London to Brighton Bike Ride by himself.
At aged 19, Joe was diagnosed with a rare genetic condition that affects his coordination, speech and swallowing. He is now supported by The J’s through respite visits in his home.
He says, “I felt relieved that The J’s could help us. They’re really supportive. The J’s is outstanding, motivational and uplifting.”
Mum Nicola is his main carer. “We are really grateful that The J’s Hospice is here to help us. The J’s team are all very professional, but they feel like part of the family.”
At the start of the pandemic, community care from The J’s was suspended whilst vulnerable people were instructed to shield. Respite breaks resumed again in September if patients were happy to have people in their home. Nicola says, “It has been lonely for us during the pandemic, so to have The J’s care back in our home was amazing for both our mental wellbeing.
“They are always interested in Joe and what he’s doing and we look forward to their visits. They are lifesavers – I don’t know what I would do without them.”
Before the pandemic, Nicola benefitted from some complementary therapy. “Having a massage is wonderful as it gives me the chance to relax and switch off. It is very good for my wellbeing and Joe is relieved that I’m getting some support too.”
Nicola said, “You do grieve for the life you had and the one that you’re not going to have, but we’re a positive family and we are always looking forward. Life is an adventure and Joe’s condition has brought us opportunities to get out there and meet new people.
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Nicola, Joe's Mum
They are always interested in Joe and what he’s doing and we look forward to their visits. They are lifesavers – I don’t know what I would do without them.