Our Willen at Home team helped Janet care for her husband, Cliff, at home until he died in 2024. Both being deaf from childhood, Janet and Cliff were able to use different ways of communicating with our nurses to understand his care and prepare themselves for the end of his life. They also found joy, friendship and new skills through our wellbeing activities.
Janet kindly shared her story through Julie, her friend and a British Sign Language communication support volunteer. Julie now volunteers at the Hospice, to help other Deaf patients and their loved ones.
Cliff and I first met at Willen Lake. We were doing a dragon boat race. It was a Deaf club team that we were in, on the same boat. I was playing the drums at the back and he was busy rowing at the front! I’ve got lots of happy memories around Willen Lake. They used to have a bandstand there, and that’s where Cliff proposed to me. We got married in 2000.
Difficult diagnoses
He was diagnosed with Alzheimer’s about 10 years ago and then Parkinson’s in Covid times, during the lockdowns. Last year he was diagnosed with oesophageal cancer and given 12–18 months to live.
We were going all over the place to hospitals, seeing different staff and different doctors. Everybody had masks on and it was really difficult because I need to lip read. I couldn’t communicate with them. But Willen Hospice helped me. It was really different help because people there cared. They took their masks off. And they gave us more time.
Care at home
“Suddenly I felt included in the whole service and I could access everything.”
The Willen at Home nurses came to visit us at home every Monday with a British Sign Language interpreter. It was a massive difference for us because suddenly I felt included in the whole service and I could access everything.
We had more space and time for us to process and talk things through, so we could understand. The nurses would also text me and I could text back. The Hospice really made it more acceptable for us to communicate directly with people.
Respectful and understanding
Some health professionals would talk into Cliff’s ear or get very close to his face and shout, or tell us to use a phone helpline. The Willen at Home nurses were more respectful and understanding of our deafness.
They gave us a communication book for when there wasn’t an interpreter present. If we had something we wanted to ask, I could write it in the book. Or if the nurses needed to tell me about a change, they could write it down. The nurses adapted and were flexible to help our needs.
Happiness in creativity
In the summer, Cliff and I started coming to the Hospice once a month for the creative group. The first time we came, everybody was just so welcoming. A lady called Jurate leads the group. She made sure we were included. We couldn’t talk and look at people and do the creative activities at the same time, so we had to really take our time.
“When he was at the creative group, he really opened up.”
At home Cliff was very quiet and withdrawn. But when he was at the creative group, he really opened up. He was more sparky and wasn’t so sad. It was nice for me to see him change – opening up a bit and joining in.
A break from being a carer
It was difficult looking after Cliff at home. I wanted to have a break, so I went to the Hospice for the carers’ afternoon tea. It was nice to get away and just relax. It really lifted me to be there and see the lovely view of the lake.
Jurate was very helpful in getting an interpreter for me and welcoming my hearing dog, Danny. People coming in asking, ‘What’s your dog’s name?’ was a good icebreaker and gave me more confidence.
Always a smile
Cliff’s cancer caused complications and he went downhill very quickly. I wish we’d had a bit longer. We didn’t do all the things we planned. But that’s the way it is. I didn’t want him to suffer. Willen at Home made sure Cliff wasn’t in pain. He always had a smile on his face and that has really helped me remember him.
Support until the end
Cliff died at home. The Willen at Home nurses visited every hour, checking him and making sure I was ok. They were there for us right up until the end. If we hadn’t had the Hospice helping us, we’d have been sent off to hospital. Cliff really didn’t want that.
“He wanted to die peacefully at home and Willen at Home made that possible.”
It was just wonderful that the nurses were there when he passed away and we weren’t on our own. He wanted to die peacefully at home and Willen at Home made that possible.
Accepted and welcome
Two days after Cliff passed away, I came to the Hospice’s walking group and it actually saved me. It was really supportive. Jurate said I could carry on coming to creative group too. I feel accepted and welcome there.
I’ve got lots of different things at home that I’ve made at the group. And I’ve learned skills. Cliff started making a mosaic table. Jurate gave me the table to keep and I finished it with Julie’s help. I know exactly which pieces Cliff put on.
“Without the Hospice, I would have been really lonely and lost.”
A second home
Sometimes the grief hits me like a bus and knocks me over. Before Christmas, I started just crying and crying. But when I come to the Hospice, it makes me feel happy and peaceful.
I’m so thankful. For the Hospice to carry on supporting me after Cliff’s died, I think that’s amazing. I’m on my own and I still feel like I can come back. I feel safe there and people know me. The Hospice is my second home, my second family. Without it, I would have been really lonely and lost.
Full of happy memories
I’d like to be involved with Willen Hospice for the rest of my life. I could volunteer or help raise money. I’ve bought a leaf for Cliff on the Hospice’s Tree of Life, so he’s still there. The Hospice is full of happy memories for me.
