Louise and Zara's Story
"It sounds strange when I tell people, but Isabel Hospice really did help me, help David have a ‘nice’ death.
I say that because David was able to die at home, age 51, with Rachmaninov playing on YouTube, surrounded by family. Our daughter Zara (6) was out with friends, but when she came home, we were able to put on his favourite song, Mr Blue Sky, and Zara was able to snuggle up in bed with him for a last cuddle. And because I had been caring for David at home for the last 6 weeks, it seemed an entirely natural thing to do. I will be forever grateful to the Hospice for this.
David and I met 10 years ago. Within a month of starting a new relationship he was diagnosed with a grade 2 brain tumour. He had an operation to remove as much as they could and several weeks of radiotherapy. Whilst this made our relationship very strong, very quickly, it also meant that from the very start we knew we weren’t going to grow old together and we wouldn’t be two 80 year olds sitting with a windbreak on Clacton beach! But I knew then that I would rather have David in my life for a short time, than not at all.
Perhaps surprisingly, we didn’t live our lives always thinking about David’s tumour. We simply got on, appreciating what we had, though it was obviously always in the back of our minds. Then at Christmas 2013 we were shocked to find out it had come back aggressively and was widespread; the news we had always dreaded. David’s surgeon operated again and over the next year he had 10-12 cycles of chemotherapy, with varying degrees of success, until in June 2015 our lovely consultant, Dr Harris, gave us the news that there was no more treatment.
David was never a moaner. He was frightened, he thought it was unfair but he never complained. However, this news really floored him. I also felt that my safety net had gone. Dr Harris always had been there for us, supporting us through all the ups and downs and suddenly that was it. Who would look after him now?
That summer we knew it would be our last summer together and tried to fill it with memories. We went to the South of France, had a huge family weekend in Somerset and had some wonderful times. David had no real physical symptoms that you would see and we spoke about lots of important things including his funeral. Later in the summer we went to Norfolk with my parents and within days David’s condition deteriorated. He found it difficult to walk, to get to the toilet, gradually losing control of his body. We even had to borrow a wheelchair from the local hospital to get to the beach. It was such a turnaround from just a few weeks before.
Once we got home, Isabel Nurse Specialist Sharon Watkins came to visit. She was shocked to see how David was, and immediately got things moving to help me, help him. From the moment we met she filled me with confidence and I trusted her. Her experience and warmth gave me the courage to know I could help David at home and get this last thing right for him and I am so grateful to her. She knew the contacts for everyone; she got us equipment and drugs sorted; she liaised with the GP and the District Nurses and she helped get a care package in place. Although she was going on leave, I was so impressed that she arranged for someone else from the Hospice to check up on us when she was away.
Unfortunately, David was diagnosed with a DVT the next day and ended up in hospital. They just couldn’t give him the specialist care he needed. By now he could no longer talk and I felt terrible leaving him there. It was an awful experience and made it clear in our minds that we just wanted him to be at home.
And that’s what Isabel Hospice helped us to do. A hospital bed was delivered, and David slept in the living room, next to the big window that looked out the front. Family and friends came and went, before and after work, just dropping in to chat to me, and spend time with David, although quite often he was sleeping now. Zara was able to see her dad whenever she liked-before and after school, reading to him, building Lego with him, tap dancing for him! David’s older children, Mike, Steve and Sophie, also spent as much time as they liked with their dad in the way they felt comfortable- in our home.
Over those few weeks I phoned the Hospice Urgent Advice line several times. When David had a seizure, I wanted to know I had done everything right. When David stopped drinking, I just wanted to know that that was a natural part of dying. I was assured it was. When David’s breathing became erratic, I wanted to know if that was normal. It was. I was always reassured, as the Hospice nurses are experts, they told me I was doing all the right things for David, and I needed to know that. Sharon also visited us frequently and was such a support to everyone involved.
When David died on 4th October 2015 he did so peacefully at home. Sharon had popped in to see him on her way back from work and I was so pleased she had got to say goodbye.
Since then the Hospice have continued to come and support myself and Zara. Nurse Wendy visits Zara regularly and has made a memory box with her, and she has decorated a tea light with a painting of her daddy in bed and given her someone to talk to.
When we were on holiday in France we saw a white feather. I told Zara that some people believe they are a sign from someone who has died. Together, David and Zara decided that sunsets would be their sign that he is looking down on her and loving her. Since his death we have seen some lovely sunsets."