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Here Louisa and her mum Deborah explain how the Hospice’s Living Well centre has been a welcome surprise, offering 25-year old Louisa the chance to try new activities, develop new friendships, and rebuild confidence.
“The Living Well centre has provided a lifeline for Louisa and me,” says Deborah, “I think most people have the impression that you go to the Hospice for end-of-life care. But people like Louisa are living with a condition. Living Well has enabled her to take part in activities and be among other people with similar conditions.”
Louisa has had Amyloidosis for six years, although didn’t receive a confirmed diagnosis until three years ago. She was first aware that something was wrong when she experienced stroke-like symptoms after her A-levels prom party and her worsening symptoms cut short both a much-anticipated gap year of travel and the completion of her degree at Leeds Beckett University.
“Louisa’s incredibly strong,” says Deborah. “There’s been a number of times when people have stood in front of her in tears and she’s been more concerned about how they are than how she is. She’s been amazing.”
Louisa’s condition is extremely rare and manifests in seizures, difficulty in forming words and communicating. “Louisa can feel quite separated from her friends because she can’t make independent contact herself,” explains Deborah, who now needs to take phone calls and reply to messages on Louisa’s behalf.
“I wanted to give her loads more opportunities. Most of the things I was trying to do were at home, and it was just me and her and she needed more interaction with people.”
Deborah explains she and Louisa were welcomed by staff and volunteers from the moment they arrived.
“On the day that we turned up, Alan was there running his watercolour class. He said, ‘Would you like to join in?’ I think at first Louisa was a little bit shy. It took two or three sessions before she ventured over. And now I think that you love it?”
“Yes, I really do!” says Louisa.
“Coming to Living Well has been a great experience and a lot of it is down to the people that work there. For me, it’s a bit of time away not just from Mum, but the environment too. It’s so nice to feel confident, to be with other people. I just feel very happy to have my own little world where I’m doing painting.” Deborah adds: “Understanding that you can live with a condition and still have a life – that’s amazing. You can make new friends, there are new activities to learn, and there are always people who are happy to see you.
“This is Louisa’s special little place, and it’s also given Louisa and I time apart from each other which has been incredibly valuable to both of us.”
“It has shown us both that other patients’ age is not important.
“When Louisa sees her friends, rather than sitting and chatting, which is quite hard, she now invites them to come and paint with her. I’ve got a friend who comes and does a bit of pottery with Louisa too!”
“I’m thankful for all that the Hospice has offered. They have given Louisa the opportunity to realise that there is so much more she can do and the confidence to try and live her life to the full.
“I think that what the Hospice really does well, is that it recognises that everybody is different. They’re all unique and care about what matters to you, and that’s all that matters.”
Louisa concludes: “I feel like I fit in. When I’m there and talking to other people, I forget being poorly. I really, really love it. It’s given me a confidence that I didn’t have before.”
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