Updated: Oct 4, 2020
‘Oh God’ I whisper, as my forehead rests on the steering wheel. It’s been a long day and I’m feeling truly ‘thin and stretched’ to coin a favourite Tolkienism. Hoping a higher power will lift the weight of my slumped shoulders, my own muscles having deflated like spent balloons. I wince slightly at the echo of another’s words staggering out of my mouth like persistent pleas for help, even if they’re not sure why.
My mother’s dementia gets her out of bed in the mornings with remarkable consistency: “Oh God...oh dear...oh God...oh dear...oh God...oh dear...” This takes her to the bathroom, together with a second, kinder voice saying encouragingly “come on now love, you can do it...” The first time I heard the marked shift in tone, I’d assumed a carer had arrived very early and was helping her, and then chillingly discovered that both voices were indeed coming from my mother. Well, I say ‘chillingly’, because it was pretty unnerving. However, there is a tiny persistent part of my nature (the glass half-full side) that celebrated her positive self-talk. Let’s face it, most of us when stressed or in pain struggle to keep the inner dialogue positive and nurturing. This is her very own accidental mantra.
Having lived in a Muslim country for almost half my life, I love the sound of the Islamic call to prayer broadcast across the golden-blue twilight of dawn and sunset. It always makes me pause, breathe deep, as it lifts the corners of my mouth, and my soul. It is a real privilege to be invited to bring my own prayers to the moment. The recent horrific acts of terrorism in New Zealand and Sri Lanka have highlighted this sacred resonance, with deeply poignant inclusivity and a prevailing yet improbable peace.
My current home is in New Zealand where the call of the blessed Tui starts and ends my days - Tui means Hope in te reo Māori. A magical sound, complete with two voice-boxes, nature's perfect karakia, and again, truly uplifting. The Tui is calling us to a moment of reflection - to gratitude for a new day, a new chance, and for peace in our nights.
Sound has always been a part of the healing process for me, and Touch for Health Kinesiology's Sound Balance, truly transformational. Finding your voice is of course, pivotal, and profoundly empowering. I remember arriving at Alice's house for our bi-weekly session; a 90 year old two-time stroke survivor, rediscovering her singing voice -word perfect renditions of the songs of "South Pacific" drifting down the path to greet me, despite a continuing lack of coherent speech. (Note to self- let's try this with mum - without judgement as to why I've not thought of doing it before now.)
In terms of daily rituals and selfcare, music can often bring together my mind, body and soul in an effortless present, even if there are shades of the past. Ranging from cathedral bells echoing around cloisterd alms houses, or a single monastic bell tolling out across the Water Meadows of Winchester, to the dulcit tones of Annie Lennox, David Bowie or the fabulous Freddie Mercury - each activates joy.
Dance music played an important role in my mother’s life too, she was a ballroom dancer in her late teens and early 20s. I remember her tango-ing around her apartment in Kuala Lumpur in her mid 70s as a form of exercise. She loves trad Jazz more than any other music, and even found herself a Jazz band to follow during the same period in KL. There is, of course, a large body of research to suggest that music is one of the most powerful forms of healing with Alzheimer’s disease and dementia, and other neurological disorders. BBC radio 4 has a specific site with music aimed at dementia patients - click the link for more information. It’s such a great idea, as are Ipods, old cassette players - vinyl players and so on. The only downside for those living alone is the need for reminders:
“Remember to put your hearing aids in - you’ll need your glasses on to see the red dot for right ear”
“Keep your glasses on…”
“Your music is on the Ipad / Ipod / cassette / CD player [take your pick], which looks like this [insert pic], and is usually on the hall table / above the TV etc.”;
“Instructions for use: click the round button, scroll - stroke the circle, (this is why you need those glasses on)... and so on... ”
My mum has so many notes on her table that locating relevant reminders is next to impossible, and as the OCD (integral to most types of dementia,) becomes her only surety in an increasingly confusing world, anyone moving and / or eliminating redundant notes is very likely to receive the bollocking she feels they richly deserve. Some days you just pick your battles and your moments.
There have been some beautiful moments over the last couple of weeks too: sitting Quayside in Padstow in the early evening sun, the gentle rise and fall of clinking boats, the calls of jostling seagulls, and a running commentary about someone we knew with a boat...she names her last husband, and we share a giggle as we realise it was actually the second husband, not the last. “Oh that’s right there have been three,” she says, with a twinkle at her own lack of conventionality. She looks like a child, ice cream in hand, but the voice is adult with a tiny trill of ‘risque’. Another, sitting in the garden in glorious sunshine on Easter Sunday, we managed a real conversation about possible next steps without resoting to eupamisms - “if anything happens to me…”. She was so thrilled to be in her garden, so thrilled to feel the warmth of sun on her skin. This ice cream dripped so extensively that we managed to change into more summery clothes which had apparently arrived by magic in her wardrobe - they certainly weren’t hers. “Is this jumper yours, Sally? It’s got sparkles, I’m sure it isn’t mine!”
Later, in the evening, when I was heading up to bed earlier than she, gears shifting rapidly, it became “Truth be told, I really just want to die, Sally. I’ve been alive too long.” Abandonment triggered so acutely that she was beyond reassurance that I would be just upstairs.
That conversation was forgotten by the time we’d ascended the stairs, checking and double checking that the front door was locked, the heating was off, the lights were off in the living room - each step punctuated with the mantra “Oh God...oh dear...oh God...oh dear...oh God...oh dear...”
She wondered in to my room minutes later to ask if I’d 'brought the car up', because she couldn’t see it through the window - one last item to check. I don’t think she meant had I brought the car up to bed with me - but anything’s possible! She was back a few more minutes later, to apologise for coming in the first time “so silly, I can see it now, with the lights off”. I feel an emoji wouldn’t be completely inappropriate at this point to be honest, but which one would I choose?
It was a day full of conversations along these lines that brought my head to the steering wheel, a whispered prayer to any deity listening. Not every day is like this, some are worse, some are better, and as with any new learning, we remember the best and worst of our teachers.
Many thanks for taking the time to read my ramblings - feel free to leave a comment or share your experiences, I'd love to hear from you.