Ashley Bayston is the Founder and Chair of the Lewy Body Society.
‘I got my love of music from my precious mother’
Dementia with Lewy bodies (DLB), also known as Lewy body disease, is the second most frequent cause of age-related neurodegenerative dementia. At least 5% of people aged 85 and older are thought to live with this little known but not uncommon and devastating disease. In the UK approximately 100,000 are thought to have DLB.
The Lewy Body Society was founded in 2006 by Ashley Bayston in order to support research into DLB and to raise awareness and educate the public, the medical profession and those in healthcare decision-making positions about the disease.
Ashley shares her journey of supporting her parents who both had dementia and the important role music played in getting them all through the highs and lows of living with the condition. The blog is illustrated with Ashley’s own sketches.
“My love of music comes from my precious mother. She was a listener, not a performer, and when asked what she played would reply: the gramophone. But she had music in her soul. She played me classical music and sang me folk songs and gave me the first record I ever owned (Mozart’s Clarinet Quintet and Concerto).
“She didn’t insist I stick to dabbles in piano and violin, which we both later sorely regretted, but she enjoyed my messing around with a guitar when I was a teenager, by which time I had also discovered jazz and choir singing.
“For many years I was married to a musician who was on the permanent music staff at Eton, whose Music School is conservatory standard. I absorbed a great deal of technical knowledge – even much of Grade 5 theory from him. Music was central to family life. One of our sons was a chorister at St George’s Chapel, Windsor and became a respected musician, composer and producer. As a family we’d regularly sing our way through Joseph and various Gilbert & Sullivan favourites, the boys’ parts changing with their voices. Our dinner parties always ended up around the piano.
“My late mother was diagnosed with Lewy body dementia in 2005 after 5 nightmarish years of trying to discover what was increasingly wrong with her. Sadly, by the time the diagnosis was made she was in the final stages, bedridden and in need of 24 hour care. The prognosis was not good but she outlived it by almost 3 years.
“A key feature of Lewy body dementia is fluctuations in consciousness. A person can suddenly go from alert and coherent to completely out of it. In advanced stages, however, there is a significant amount of sleep and being in a seemingly unconscious state, though apparently taking in what is about them.
“The doctor suggested that music might be something she would enjoy so we put a stereo in her bedroom and played it continually. It seemed to keep her calm when she was restive. And sometimes brought her out of her Lewy state in the most remarkable way.
“I will always remember one bleak afternoon whilst I was watching her breathe when my grief and despair were suddenly hauntingly penetrated by her voice singing along to a Haydn string quartet. Sometimes, when she was alert, she’d ask for specific pieces. We went through a Gershwin phase.
“During Mum’s illness I found that in my own time I could only listen to the Bach Unaccompanied Suites. I had cello recordings by 6 different artists and 3 on guitar, which I prefer.
“Eight years after my mother passed, my father collapsed with heart failure. He, too, was not expected to survive long and was discharged from hospital into hospice at home care. He too outlived his prognosis by almost three years. I credit these amazing survivals to the team of angels who lovingly looked after them both.
“I was not living with my parents at the time of my mother’s illness, but travelling there frequently. When my father got ill I dropped everything and stayed with him until the end.
“Because his brain was not getting enough blood, my father developed vascular dementia but it was nothing like Mum’s LBD. There were no hallucinations. Motor problems were because he was bedridden. There was increased sleep as time went on but when he was awake he was awake and could watch television or read until the final months. His moods did not fluctuate.
“Several months into Dad’s illness, I decided that I wanted to play the guitar again. I bought a Martin backpacker, which is a skinny instrument with a full sound, designed to fit in the
overhead compartment of an airplane. Christmas was approaching and I played carols ferociously.
“My father’s hobby had been making beautiful things out of wood. He was an extremely skilled cabinet maker and when I was going through my teenage folk music period he made me a dulcimer, which I never learned to play but has always been with me. The funny shaped guitar is not unlike it and Dad thought that was what I was playing. At first I explained but later didn’t bother. It made us both happy to think I was playing my beautiful dulcimer.
“Dad’s appreciation of music also came through my mother. He’d not been exposed to it as a child as she had. But he loved jazz, which my mother didn’t, and we listened to it together, almost guiltily. He also loved Piaf and for about a week got fixated on the Yale Glee Club’s Whiffenpoof Song.
“After 2 years’ vigil, when I finally allowed myself to think about the future., I realised that I could live anywhere when the time came! I’d been retired from the day job for many years and doing my work for the Lewy Body Society remotely. Newcastle ticked all of my boxes: a small, friendly city with lots of culture, not to mention a gorgeous river with magnificent bridges. And in anticipation I started doing what I called Karaoke Ceilidh: playing along to recordings of traditional Northeast music, especially the High Level Ranters.
“I arrived in the Toon in August 2019 and immediately signed up for Tuesday Folkworks at the Sage, Gateshead, joining the Folk Choir and the NorthEast ensemble, which consisted of 4 smallpipes, 3 concertinas, 2 fiddles, 2 flutes and 2 guitars. Unfortunately lockdown ended that and neither group has yet resumed in the reopening.
“But in autumn 2021 I restarted music at the Sage as a member of the 200 strong chorus that recently performed the Verdi Requiem with the Royal Northern Sinfonia. It was the most fantastic experience and though I always found the work too operatic for my taste, it was a wonderful way of re-entering making music. I’d not sung in a formal choral society for almost a decade and hadn’t done any virtual music during the pandemic because for me the joy of singing in a choir is other people’s vibrations.
Which is what music is all about. Vibrations. Harmony. A better world. Schubert’s An Die Musik is on the top of my playlist because it says it all.