John and Trudy have been married for 29 years and enjoyed what they describe as a ‘normal life’ until their world changed, following an unexpected diagnosis.
Around five years ago, aged just 55, John became unwell and suffered what appeared to be a stroke. This was the beginning of a period of uncertainty and change for the family, which would drastically change their lives. John had to undergo lots of tests and was thought to be suffering from restless leg syndrome, a common condition of the nervous system that causes an irresistible urge to move the legs. The painful and sometimes uncontrollable symptoms severely impacted John’s everyday life and he had to find ways to manage the constant pain that he was in. This even led to him having to sleep on the sofa.
There were signs that there was more to John’s condition. His behaviour started to change and he was becoming forgetful. He would often leave early for work so Trudy wasn’t always aware when he’d left.
One morning she called him to ask where he was, and he replied “I don’t know… King’s Cross?” He couldn’t remember how he got there or why and had also started doing some strange things at home, like opening tins and pouring them down the sink. It was also clear to see something was wrong in the way he was walking.
“We went to the hospital to get John’s results and our lives changed forever “
Eventually, and following more tests John and Trudy received an urgent call to meet with John’s neurologist. It was at this point that he was finally diagnosed with Corticobasal degeneration (CBD) – a rare and progressive neurological disorder which can cause gradually worsening problems with movement, speech, memory and swallowing. The symptoms can be painful and distressing and Trudy describes the condition as ‘part Parkinson’s, part dementia.’
The situation felt hopeless and they didn’t know what to do to help him. And then things started to change when John was referred to Greenwich & Bexley Community Hospice, and that was when John and Trudy met Natalie.
“When John was referred to the Hospice, I was scared. I couldn’t understand why we were under hospice care. ‘Palliative’ means end of life. But then we met Natalie.”
You’re not alone
Natalie is a Clinical Nurse Specialist, part of the Hospice team at the Queen Elizabeth Hospital, and she explained that the Hospice was there to support them – not just to provide care at the very end of life, which is what a lot of people think of.
Natalie and the whole team quickly went about making arrangements for adjustments to be made at home that would make John comfortable and help with managing the pain and remain independent. There were lots of phone calls and visits at home.
But the main reason for the hospice referral was because John was in such pain. The neurologist told Trudy that the Hospice were experts in dealing with pain.
John spent three weeks in the Hospice inpatient unit for close monitoring and so they could find out which medications were going to work best for him. "John was under Dr Andrew who was great at liaising with John’s neurologist and getting support to try a drug that he really believed would help. “It’s been amazing to see him advocate for my husband.”
John and Trudy’s journey has changed the way they see palliative care and the support the Hospice can provide.
"The way the Hospice team worked with John’s wider team was ‘just brilliant’" said Trudy. "Everyone pulled together to help, but it was the Hospice leading the way. I didn’t have to do everything alone.
Before John was ill, I thought the Hospice was where you went to die. Whenever I tell anyone ‘I’m going to the Hospice’, you see the panic on their faces. The way I look at hospice care, is that they are the experts in pain relief.”
Support all the way
One of the other ways the Hospice helped was to make sure John was receiving the nutrients and vitamins he needed. PEG feeding is a way to introduce food, fluids and medicines via a tube into the stomach and the family were adamant that they did not want this. “It sounded so scary, but Lisa from the Hospice community team came out to our home to explain it to us.”
Lisa also worked with other healthcare providers to support Trudy; attending assessments at their home so she could be by their side to help answer questions, or explain things in more detail when Trudy was unsure. Even now, Lisa continues to check in every few weeks to see how they’re doing.
“The Hospice helped so much – they really are a massive part of John’s team. I know I can contact them anytime. Someone will be at the end of the phone to help me. If I’m worried, I ring the Hospice. I rang one weekend because I was going to run out of some of John’s medications. ‘Leave it with us.’ they said and they sorted everything. They phoned John’s doctor and made all the arrangements for an urgent prescription. All I had to do was go along to collect it from the pharmacy. What would I have done without the Hospice?”
It’s the little things that make a difference
Back at home, John’s nurse Lisa regularly goes above and beyond to support the whole family. When John’s mum sadly died, it was 1am when Trudy remembered John had an appointment the next day. She frantically emailed, understanding Lisa may not see the email in time, but asking if she could help rearrange the appointment. At 9:30am the next morning Lisa replied letting Trudy know it had all been taken care of.
“It may seem really little, but that was massive for me. I was so stressed about them being cross at me for rearranging, but Lisa handled it all. It’s like a lifeline” said Trudy.
Independent and pain-free / The journey so far
“At the hospital you never see the same people twice. But over the last five years, we still see the same smiley, familiar faces when we visit the Hospice. When I used to take John into the Hospice for physio, we’d see if we could do it without bumping into anyone because he’s like a celebrity in there! Everyone comes to say hello.
“His pain is so well managed now – sometimes I wonder if he’s lying to me. When family or carers come round John says ‘ask me about my pain - look at me! We can do things now. We went out to the pub for Sunday lunch. We were out for two hours and it was lovely. John couldn’t have done that before. He would have been in agony; I couldn’t even touch his arm and he wasn’t getting dressed. And we’re off to the cinema on Saturday night. – Jonny suggested it as our favourite writer has a new film out. He said ‘oh Mum we’ve got to go and take dad!’”