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"I want to do whatever I can to make sure Roger isn’t forgotten and do all I can to help the hospice"

Sue Johnson will be dedicating a light on our Tree of Love this year in memory of her husband, Roger, who passed away, at home, in April.   During the last few days of Roger’s life, Sue and her family had been supported at home by nurses from the Palliative Care Nurse Specialist team as she recalls:

“Alice, the nurse who was with me when Roger died was amazing, just wonderful. She stayed with us, helped us and did everything we needed. In fact, all of the caregivers from those that supported with personal care through to the nurse who stayed overnight with us, were all so amazing.”

Roger was diagnosed with Chronic Lymphoid Leukaemia in 2006 which was managed through regular blood tests until 2016 where results showed his condition had progressed and drug treatment began.  He continued to suffer from regular infections over the next 4 years and towards the end of March this year he developed another infection and was admitted to Northampton General Hospital for a week.  Sue recalls that while in hospital he was advised that infections were going to continue happening and the couple made the decision that Roger would come home and an end of life plan was put in place for him.

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Roger during one of his stays in hospital and a visit from Sue

Sue said: “Roger was definite that he didn’t want to go into hospital and wanted to be able to stay at home with me and be near the children. Thankfully we were told by Cynthia Spencer that he could be cared for at home which allowed us to support him and spend time as a family.”

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Family portrait with Roger, Sue, their children and grandchildren

“During the week as Roger started to deteriorate, from the Monday onwards all of this support and equipment kept arriving from across the county. It was amazing.  They made sure he was comfortable and peaceful and were so supportive of me too. We were even able to keep one of our main family traditions going. We’d always enjoyed our Friday nights together as a family and the evening before Roger passed away we had ‘Nibble Night’, a socially distanced get together in the bedroom so we could be with him.”

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Roger and wife, Sue socialising with family

It was then Saturday afternoon that Roger passed away. The children, Oliver, Melissa and Emily had gone home to see their families and Sue was supported by nurse Alice from the Palliative Care Nurse Specialist team.  

Sue remembers, “It’s often said that people wait until they know everybody has gone and it was almost like Roger waited as he knew the children had gone home and he just let himself go. It was comforting as he had control right up until the last minute which was what he wanted.”

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A lovely photo collage made by Roger's daughter, Emily

Sue said of the care Roger received: “It was a very difficult time for the nurses as well as us, they were all amazing and we will be forever thankful for their kindness and expertise. I would like to dedicate a light to him and will be setting up a fund to send further donations to the hospice in the future when we can hold a Celebration of Life in church, with family, friends and colleagues.

“I want to do whatever I can to make sure Roger isn’t forgotten and do all I can to help the hospice together with my friends and Roger’s former colleagues and his many contacts from Round Table and Rotary would like to help too.”

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Roger with one of his granddaughters

“Our grandchildren are pleased that Grampy is having a light on the tree. Christmas is a very, very important event for our family and especially the decorating of the tree which the whole family would help with! This year it’s going to be very difficult though with one of us missing and of course we can’t all be together as there’s 13 of us.”

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Roger with one of his seven grandchildren

Thank you Sue for sharing your story and for your wonderful pledge of support for the hospice in Roger’s memory. 

If you would also like to dedicate a light in memory of a loved ones, please visit www.cynthiaspencer.org.uk/treeoflove

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