Julie was safe and happy: Johns Journey

After being diagnosed with motor neuron disease (MND), Julie, John’s wife, who he describes as “a million things, beautiful, incredible, loving, fun, caring”, spent 25 days in Halton Haven Hospice for end of life care.

John says “Julie made a decision early on in her care plan that she didn’t want to die at home, she wanted to be at Halton Haven. I now have a life long connection with the Hospice as my final memories, some great memories, of Julie are there. During that time, you can imagine how close we got to the staff and everybody that worked there. It’s incredibly hard when you lose somebody you love so much however, it couldn’t have been nicer in that situation.

“The staff loved her and laughed with her, it was incredible.”

“I like this caravan”

“The doctors would come in every morning with an open ended question ‘How are you today Julie?’ and she could answer anything. Sometimes you’d hold your breath wondering ‘What will she say today’. One day she said ‘You know doctor I like it here, I’m quite happy, I like that John can stay with me and I like the fact that Rob Burrow is in the room next door.’ Obviously he wasn’t but she took huge comfort in thinking that Rob was next to her. Towards the end of her life Julie started to believe that her hospice room was actually a caravan. She would say ‘I like this caravan’. It became our joke. Our last 25 days were spent in Room 2 at Halton Haven Hospice and there are many lovely stories and great memories that we still have.”

Made to feel welcome

“We almost created a home from home, people came and went we had the freedom to do that. I stayed on a pull out bed in Room 2 for 21 nights. On a night time I would go sit in the lounge and the staff would always come over and ask me ‘how are you today?’. I wasn’t the patient, it wasn’t about me, but they would come and have their tea with me and whoever was there would ask if I needed anything. I was led through what was likely to happen as she approached end of life, so I was always involved and aware what was happening with Julie. I liked the way they accommodated me to be with Julie.”

I never got the feeling I was in the way, the staff were as beautiful with me as they were with Julie.

Preserving Memories

“Throughout her illness I kept a diary of milestones, daily occurrences, and memories. It started quite small but as Julie’s health deteriorated and she slept more, then the diary entries got bigger. At the end of every day, I would send the diary entry out to everyone in our family unit so everyone knew at 9pm they would receive their daily update. After Julie died, that’s when I really found a lot of comfort in writing, reminiscing and preserving what memory I had while it was fresh in my mind.”

John is now in the process of releasing his own book filled with these memories called “No Plan B”. You can pre-order the book here: Books – Scratching Shed Publishing

John has attended many of our Hospice events and even read a poem at our Tea at Three event, but one of the main ways he has supported us is through doing walks, including a sunrise walk up Snowdon, a 14 mile walk from Spike Island to the Royal Liver building, and on the anniversary of Julies death he walks from his home to the Hospice.

“Yes, it’s about fundraising but the silver lining is doing something special as a group of people that gives you a connection. I can’t undervalue how important that is.”

Talking about another walk John says “All the teachers I used to work with joined me on a walk from Preston to St Helens (26 miles). When we set off none of us knew if we would finish. The main memory from that event is before we did the last 500 meters we all stopped so we could walk across the finishing line together. That feeling of completing such a big challenge in memory of Julie was overwhelming. When you achieve something that is so personal, it was a beautiful moment. All day we were catching up with old friends, it was a brilliant day, and I am proud we did it. When people give up their time it is really special.”

Thank you so much to John and all Julies’ family and friends for raising awareness and funds for Halton Haven Hospice. Do you want to get involved? Email fundraising@haltonhaven.co.uk to find out how you can help add life to days.