John’s story

"I can't tell you how grateful we are for everything St Clare did for Dad and for us, and I'll make sure I keep telling our story, the story of the amazing St Clare, to everyone and anyone."

“Ever since he stopped working, Dad referred to himself as a ‘retired schoolmaster’. He was extremely clever, very kind, loved a glass of champagne and accepted my wife, Claire, with open arms. He was the best man I’ve ever known. 

“Dad taught at local secondary schools for more than 10 years and was well known in the village. Right up until just before Christmas, he’d go out on walks and after he died, that is one of the things people wrote in their condolence cards: We miss seeing him on his daily walk. I miss everything about him every day.

Dad’s relationship with St Clare

Dad’s relationship with St Clare started gently. He was diagnosed with colon cancer in December 2019. He was seen and operated on quickly, and he recovered well. We had hoped the surgery would be curative, but by the following summer we were told it had spread to a lymph node and then to his liver. 

“Dad opted for no more treatment. He told us he had no regrets; he’d lived a good life and had nothing more he wanted to achieve. We thought he might have 12 months, but in face, he lived practically symptom-free for three years.

“Things changed in early 2023 when he was suddenly unwell. We contacted the GP and were told that it was not the end of life. Claire and I felt this was a bit premature, as he was still walking to the end of his garden to look at the model railway he’d built. But, with hindsight, it was absolutely the right call because this was when the contact with the Hospice started. 

“Dad deteriorated quickly, although to us it felt horribly slow because every day was very long and difficult. Having the GPs, district nurses and the team from the Hospice involved early on was invaluable because it meant the support was there as things happened. Nobody had to scramble to get care packages in place. It was smooth and fast.”

Dad was involved from the beginning

Claire continued: “Abi, a district nurse, visited and talked to John about how the district nurses and St Clare worked together. She asked him about his wishes and his end-of-life care. John was a man of a generation where you don’t talk about your feelings. He told her he didn’t need to think about these things now or need to have a hospital bed, which she had advised. She gently told him he didn’t need to now, but there would come a time when he would. On that visit, John agreed to have the St Clare Hospice at Home team visit.”

Vicki added: “After Abi left, Dad spoke to Claire and me. He wondered what the Hospice Inpatient Unit would be like. Claire asked him if he’d like to visit it, and he said no, I don’t want to see it myself. She then asked him if he would like her to go and look at it, and he said yes. But as it turned out, the first time we saw the Unit was when Dad was admitted. Everything was being so well managed at home that we thought he would be able to remain there.

“We managed at home with the help of the Hospice Clinical Nurse Specialists, Hospice at Home and the 24 Hour Advice Line.

“We had been receiving regular visits and phone calls from the Hospice Clinical Nurse Specialist Jo. She spoke to Dad about pain management because he was concerned about that. Mum died from cancer in 2011, and we’d both witnessed her uncontrolled pain. With the help of the St Clare nurses, we managed to keep on top of his pain, which was so important.

“Jo was amazing; she just kept coming to help, appearing like a vision every time we needed her, and whenever we spoke to her, she was so reassuring. It was the same with her colleagues, many of whom we spoke to on the phone when we had a question or a concern. 

“We also found the 24 Hour Advice Line a lifeline. I think many people don’t know about it or feel they can’t call because somehow they might be interrupting a nurse at the Hospice. I know I felt like that, but the Hospice nurses said, ‘call us for anything’. Nothing was too small to discuss. And although the Clinical Nurse Specialists gave us emotional support, they also encouraged us to be referred to the Patient and Family Support Service. They looked after us and Dad.

When things become unmanageable at home

“Things changed when Dad started getting delirious. We had carers 24/7 and the Hospice at Home team were coming in, but things became dangerous for him at home and we weren’t able to make sure he was safe. We wanted to avoid him falling at all costs and going into hospital.

“At that point, none of us was living, we were just existing and that’s when we made the decision to see if a bed was available on the Inpatient Unit. I remember vividly the immense relief when we were told he was going to be admitted.

People’s kindness makes me emotional

“The ambulance arrived to take Dad to the Unit exactly on time. I rode with him in the ambulance and Claire followed in the car. It makes me emotional now because you like to think that people are generally kind, but sadly they aren’t always.

“The kindness we experienced from everyone connected to the Hospice, from the ambulance crew to the nurses, was extraordinary. Dad was a really kind man, and so it was important to me that he was treated in the way he treated others.

“It felt calm on the Unit. It was medical, but it didn’t feel medical. It didn’t even smell medical. The physical space with the patient rooms around the octagon is wonderful. Everything is contained in one place. No matter where you are, you can look one way or another and see a member of staff or a volunteer. 

“There is so much individual care. Lisa, one of the healthcare assistants, sang songs to Dad from The Sound of Music and Mary Poppins – all the films we’d make him watch, under duress, every Christmas. They even trimmed his beard and eyebrows and said, ‘you no longer look like Captain Birdseye’, which really made me laugh. We were no longer his carers; we were family again.

Keeping Dad safe and comfortable

“The way they thought about keeping him safe while he was delirious was simple yet innovative. They put his bed against a wall and a pressure mat on the other side. If he got out of bed, the alarm would ring. The nursing staff were so experienced and knowledgeable. 

“The day Dad died, I had a sense that things were progressing, and they gently said it might be good to not pop home that day. As his breathing changed, I knew something was happening. I found it very hard.

“Maggie, one of the healthcare assistants, who was amazingly kind, said to me, ‘if you don’t want to be on your own, I’ll come and sit with you’. Yes, she had other things to do, but at that time, we were the centre of her whole attention. She adjusted the lights and did everything to make things as easy as possible for me in those last moments. 

“The whole team then gave us the space we needed and asked if they could tie a white ribbon on the door. I can’t tell you how grateful Claire and I are for everything St Clare did for Dad and for us, and I’ll make sure I keep telling our story. The story of the amazing St Clare, to everyone and anyone.”

Vicki, John’s daughter, and her wife Claire

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