3 years ago today, my Dad died. He died, as most people reading this will probably already know, from Motor Neurone Disease, a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord.
For my Dad, this meant losing his voice in 2010, his ability to eat and drink normally in 2011, his ability to move independently in 2012 and his life in 2013.
As hideous as this was to watch for me, my younger brothers and sister, my Mum and the rest of my family, there were things that made it a little more bearable. For example, the MND West Yorkshire branch provided my Dad with an iPhone when he first lost his voice, which he used to type what he wanted to say, and an app would speak on his behalf.
Another thing that made things a little easier was some of the care he received – he had a fantastic GP. Ultimately, what made most of it bearable was Dad’s attitude, especially in the first 3 years of his diagnosis from 2009, when he would continue playing 2 rounds of golf a day, and finishing off with a couple of pints through his PEG tube.
However, towards the end, when things were pretty rough, Dad couldn’t communicate with us using his phone or his iPad, and we waited to hopefully receive a piece of equipment called an Eye Gaze, which Dad could have used to communicate with us, rather than us asking a million questions and waiting for a thumbs up to say whether we were on the right lines or not.
We got the go ahead for an Eye Gaze eventually – in the week after Dad died. That meant my Dad died without being able to speak with us properly for months. We didn’t know his final wishes. We didn’t know how much pain he was in. He couldn’t tell us what he felt, or what he wanted, and this fact has haunted me ever since.
To mark the 3rd anniversary of his death, I would like to really focus on MND’s latest campaign, Champion the Charter. The campaign builds on the success of the Charter which was signed by over 33,000 individuals and was presented to Downing Street last summer. The campaign aims to get more councils adopting the charter, which aims to ensure that people with MND and their carers receive the right care, in the right place, at the right time, live the highest quality of life possible and achieve dignity in death.
The progress made in the last 3 years has been phenomenal, and it is highly likely that if my Dad was around today and needing an Eye Gaze, he may well have received one before his death – I cannot explain how incredible that would have been.
Please, please take 5 minutes to drop an email to your local councillor about the Charter. It’s so easy, as the MND Association have set out all you need here including email templates and other materials.
It would be a fantastic legacy for all those who have died from MND without the right care and equipment, to ensure that others don’t suffer this indignity in the future. Please get in touch if you have any questions and I can point you in the right direction.
Missing you every day, Dad, but particularly today. I’ll have a Crabbies for you later on!