“We no longer felt quite so helpless”

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“If you’ve ever stayed in the main hospital – the Hospice is nothing like that. People don’t just come there to die,” says Jo Maunder, whose husband Dave was diagnosed with Motor Neurone Disease in 2015. “They come for treatment, to review medication so they can get the most out of what time they have left. It has a very positive atmosphere. There is so much love there – not all doom and gloom like I had expected! The staff are incredible, they have all the time in the world for Dave. They can be jolly – but they can be a shoulder to cry on too, for the family as much as the ‘patient’.”

“Dave led a very active life. He cycled six miles to his warehouse job in Aston Clinton every day and ate healthily, wanting to keep fit so he could do nature conservation work for BBOWT when he retired: he’d always had an interest in moths, butterflies and the natural world. It was autumn 2015 when he first said he thought something was wrong. His legs felt heavy, he thought his speech was slurred. Then he mentioned that his muscles were twitching – just one here, one there – you really had to stare to see it – but at that moment I knew that something very, very serious was wrong with him. Two weeks after seeing his doctor Dave saw a neurologist, and on 29th December 2015 our lives were changed forever.

“I thought there would be lots of tests, that a definitive diagnosis would be weeks away. But Dr Jackson said there and then, I know what is wrong with you, it is a very rare disease, affecting only 2 in 100,000 people – Motor Neurone Disease. I remember being told average life expectancy is between two and five years. We were completely devastated, and walked through Wycombe Hospital sobbing. Going home to tell our children was without doubt the hardest thing we’ve ever had to do. We weren’t given any written information so went and googled it. What we read was horrific. We felt very alone.

“One night in early 2016, Dave woke up choking terribly. We all stood round feeling quite helpless, watching, daughter on standby to phone for an ambulance. “Is this it?” we were thinking. The next day a Doctor from Florence Nightingale Hospice came to visit, and we were put in touch with Sue Eddy, a respiratory Physiotherapist from Florence Nightingale who showed us things we could do to help Dave should he choke like that again. She is amazing! A continual source of help and advice. The techniques she has shown us mean that we no longer feel quite so helpless.

“Then Sue Warr from the Hospice began to phone regularly. It was such a relief to get support, to know that someone was there if you needed them. The word ‘hospice’ still filled me with dread though, made me want to cry. To me, hospice meant death, and I dreaded the thought of going there.”

Dave started attending Day Hospice once a week from March 2017, and has had two week-long respite stays [in the In-Patient Unit]. “I was made very welcome and have always been given excellent care and attention,” he says. “All the staff are very competent and nice, and I look forward to my visits.

“I was a bit anxious to begin with,” Jo says. “But Dave really enjoyed his first session, and when he came home Tracey had written in his notebook, telling me how his day had gone. After that I didn’t worry at all. It was a real treat having one day when I could go out and relax, knowing Dave was in safe hands, being well looked after.”

“The Hospice has its own doctors that we are able to get to know,” she continues. “We have had meetings where they have reviewed medications and suggested alternatives. We have had difficult conversations, the sort we both try to avoid at home. They are not easy but it’s important that everyone knows what Dave’s wishes are, important that he has his ‘say’. It’s such a huge relief, knowing that there is help there if, and when, we need it. The Hospice has continued to support not just Dave, but the whole family, ever since.

“By going in regularly we have got familiar with the place and the staff. We know what lies ahead for Dave, and it is not quite so daunting now we know what to expect. And I no longer dreaded going there, in fact, I look forward to going in to visit when Dave’s in respite – the staff are fantastic, it’s like being part of a big family!

“Looking back at photographs brings it home to me how quickly Dave has deteriorated. A year ago he could still walk, talk, eat and drink. He can do none of that now. Can you imagine? Being almost completely paralysed, only being able to move your eyes? Having to be hoisted because you can no longer stand? Not being able to scratch an itch, wipe your nose, chat to your friends? It has been a very difficult time for all of us, and I don’t know how I would have coped without the support of the Hospice. It doesn’t bear thinking about.”

This article was written in August 2017. Sadly, Dave passed away peacefully in the Hospice in November 2017.