Dementia, Mum and me
16th May 2024
I don’t usually perform at Headingley Stadium. I was never any good at cricket, and - while moderately speedy in my prime for a tall lad - didn’t trouble the school rugby team for long. However in May I spent an inspiring day in this temple of sporting excellence. I was MCing a Dementia Action Week event, beautifully organised by, amongst others, Elizabeth Griffin from Leeds Older People’s Forum and Tim Sanders from Leeds City Council: https://www.opforum.org.uk Dementia is a subject which is very personal and very close to my heart.
My lovely Mum Carolyn died on July 11th 2022 after living with dementia since 2017. She’d been formally diagnosed with mixed dementia (in her case a combination of Alzheimer’s disease and vascular dementia) early in 2018. From March the following year I began recording, either in her house or sitting outside in my car, a weekly audio diary. At first it was broadcast on my weekend breakfast shows on BBC Radio Leeds, but was soon added to BBC Sounds: https://www.bbc.co.uk/programmes/p082m6hx
By the time of Mum’s death, at the age of 86, there were 149 episodes of ‘Mum and Me: The Dementia Diary’. The final one, recorded next to her bed hours after her death, prompted a huge and emotional reaction and closed that week’s edition of “Pick of the Week” on BBC Radio Four: https://www.bbc.co.uk/sounds/play/p0clh9kd
Mum’s ‘journey’, that of an ordinary woman (in the best sense of the word), had touched people. It turned out - I reckon - to be the most significant work I did in 34 years with the BBC. I spoke, not as a broadcaster, but as a son struggling to care for a loved one who, week by week, was changing, forgetting who they are and who you are, but who was still my Mum. In 2021 I was honoured by the Alzheimer’s Society with a ‘Dementia Hero Award’ to mark the contribution the diary had made to increasing public understanding.
Like many people I worry about stuff, but - as so often in life - it’s what we don’t expect or predict that ends up blindsiding us. I knew a bit about dementia. I’d talked about it on air often and to people with it; I knew Peter Smith BEM from Rothwell south of Leeds who’d set up a wonderful support network; I’d even made a radio documentary about memory and the Tour de France (an odd sounding combination, but it worked - we can all remember our first bike!). But it’s not until you experience something first hand, until you walk in that person’s shoes, that you really understand it.
That’s why, if I’m asked to speak about my experiences with dementia (or - in this case - to spend a very positive few hours talking every now and then into a microphone to guide people round the South Stand and to a host of events, talks, performances and stalls), I’m delighted to help out. Our hosts were the Leeds Rhinos Foundation. The excellent Bob Bowman, the charity’s CEO, started the day off with some rousing words. The photo of me was taken by one of his fabulous team - thank you Annie Blackburn: https://www.leedsrhinosfoundation.org/
I’m lucky that my new working life gives me a lot of flexibility. I’ve spent a term working with journalism students at the University of Leeds, done training work with charities, hosted a number of events and debates and chatted to Women’s Institute and Rotary Clubs about my life on air. But I don’t usually start crying when I’m talking in public. Organiser Elizabeth asked me if I’d consider giving a talk about my personal, lived experience of dementia. I took along Mum’s soft toy donkey Ripple for moral support and was allocated, appropriately given my working life as a journalist and broadcaster, the press room at Headingley. It wasn’t a big crowd, but it was a wonderfully supportive one. And, from the comments afterwards, it was obvious that my words and stories helped at least some of the people who came to listen. If you’d like me to talk to your organisation or group about dementia, Mum and me, please do get in touch, but remember to buy a big box of tissues! There may be tears: https://www.theandrewedwards.com/contact
