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Fri 16 Oct 2020 - posted by Willen Hospice

Here are just a few stories about people who have inspired us this year. 

Claire’s mum, Anna, is living with a rare neurological disorder called Corticobasal Degeneration and has been involved with Willen Hospice since 2017. She’s spent time with our Wellbeing Team, on our Inpatient Unit and with our Willen at Home nurses. But during Covid-19, it was Claire herself who benefited from our care too. “In early 2019 Mum’s condition grew more complex and I felt I wasn’t coping very well looking after her at home on my own. She needed 24hr care and I had to make the heart-wrenching decision to move Mum into a nursing home. A decision which I felt absolutely racked with guilt about. “Before lockdown I’d been visiting twice a day. That had to stop very suddenly and I couldn’t visit her at all. The guilt came back ten-fold then.   

I contacted Willen’s social worker Theresa to talk about what I was experiencing and I was offered some specialist counselling with their psychologist Sarah. We used a technique called Eye Movement Desensitisation and Reprocessing (EMDR) and because of social distancing our sessions were held virtually. “I was sceptical at first but it’s lifted a huge weight - to the point where I almost feel like I never suffered with those guilty feelings. Sarah’s shown me how to allow myself more self-compassion rather than beat myself up about not being able to provide the complex care mum needs. Her support has also helped with pre-bereavement grief. Neurological conditions mean that you lose the person you knew and loved slowly rather than suddenly and it often feels like a rollercoaster of emotions to contend with. It’s all helped so much and I’m really grateful for that.” 

Lynda is being supported by the Hospice to relieve the pain and symptoms of her lung cancer. Covid-19 meant she had to shield at home, but a wheelchair provided by our physiotherapist, Nicky, has made a huge difference to her life as lockdown eases. “I went out for the first time in about eight months when I got my wheelchair. It was a real yee-hah moment! My cooker broke so my friend took me to the shops and we had a bite to eat. I was only out three hours but it felt like a day out, it was a fantastic, magical day! 

"The Willen at Home nurses have been phoning me throughout lockdown, and Nicky has given me some physio exercises to do. It’s been nice to know there is somebody there I can talk to and ask questions, or if I just want to chat. I’ve got good friends around me, but knowing that the specialists are there to talk makes such a difference. They’re all so lovely. I feel as if I’ve known them all for years.”  

Hen has a rare progressive neurological disease. At 27 she is currently one of our youngest patients and has been coming to the Hospice to stay for short periods of time, as a ‘stepping stone’ between the hospital and home.

Things have been different during Covid-19 but her mum Jan says the Hospice has been a vital part of her care: “Hen loves being here, because it’s very ‘non-medical’. We’re so lucky to have somewhere that deals with people as a ‘person’.  

The crucial thing is quality of life which is what Willen Hospice is all about. “Psychology is a really important part of coming here, and that’s something that Hen really benefits from. During the lockdown she was referred to Charlotte, a Hospice psychologist, but because of social distancing, their contact was only by email. More recently we’ve been able to meet her and have a couple of sessions - where would you get that otherwise? Seeing doctors each day and them asking you ‘what’s worrying you?’ and ‘how can we make things easier, better, for you?’ It’s all been really important for Hen and us as a family.”

Pam Sharman is a Clinical Nurse Specialist on our Willen at Home team. Along with her team, she has continued to support patients throughout the pandemic, but she admits it’s been hard. “Our biggest challenge is that as nurses, we’re normally quite touchy-feely and when people are in distress we want to give them that hug, we want to hold their hand. When somebody’s perhaps in the very last stages of life it’s about comfort. When we’re wearing our masks, patients can’t even see a smile. We’re trying to do the best we can in a very difficult situation and your support makes it possible.”

Thank you to our patients and families who agreed to share their experiences with us. Before, during and after Covid-19. There will always be a need for us to provide specialist care. That’s why your continued support is so important now and in the future.

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