I hosted a poetry reading at work on Friday night. I do this regularly as part of my job and the group that organizes the reading is a lovely group of (mostly) women in their fifties to seventies who are very talented poets.
The theme of the reading on Friday night was dementia.
Dementia (taken from Latin, originally meaning “madness”, from de- “without” + ment, the root of mens “mind”) is a syndrome which affects areas of cognition including memory, attention, language and problem solving, and which are severe enough to not be explained by aging alone.
Poetry is a wonderful medium for conveying experience. The arrangement of words creates rhythms and sounds that engage all of the senses. I have been privileged to be able to sit and listen to poets read their own poetry aloud with careful and meaningful nuance.
Listening to poetry always affects me at a deep, metaphysical level. I find myself pondering all kind of things, memories triggered, refeeling old emotions, and considering the meaning of life.
As the poets narrated their poignant vignettes of living with dementia: the lost personalities, the strange obsessions, the sheer demand of caring for the loved one who suffers, I found myself with tears rolling down my face.
I was not simply emoting to their pain and grief, I was feeling my own.
I have lost my dad to dementia.
Dad is still alive, I don’t mean lost in that sense. He is simply not the dad I knew. He no longer tells stories because he can’t remember the facts and he gets frustrated with himself and then so tired with the effort of trying to remember that he forgets what he was trying to say in the first place. His speech is slow and erratic and he often drifts off or falls asleep mid-sentence. I call these his “grandpa Simpson” moments.
He can barely move or walk with a frame, an avid reader, he can’t read much now because the concentration and short-term memory is no longer there. He watches a lot of telly, but when you ask he about what he is watching he has no idea what’s happening. The upside is he can watch the same shows over and over without getting bored. Not such an upside for mum though, his failing hearing means she gets the same program blasted out at her day after day.
I have to say after watching dad’s demise; I see no upside to aging. Having to be showered and helped to toilet by other people, being housebound and totally dependent. I would be furious if I were him.
I hope you’ll excuse this tribute to my dad. I expect in the coming weeks and months I will be writing about him slipping further away and I suppose I just want to acknowledge what is lost. (You can skip on ahead to the recipe at the end if you like).
It’s funny how I spent most of my life not really interested in who my dad was as a person and by the time I was interested, he had started to disappear into himself and I was forced to find out from others who knew him in his prime.
I always knew my dad grew up with illness and disability, he was epileptic and born partially paralysed down one side of his body, he had polio as a child and was in calipers (those medieval looking leg braces).
He was fortunate to be born to Margery and George, an avid children’s welfare crusader and doctor respectively. Naturally left-handed at a time when that was considered the mark of the devil, or some such thing, he was forced to learn to write with his right hand. He had to revert to writing with his left hand after he broke his right arm playing on a mullock heap in Ballarat where he grew up. (Mullock heaps were piles of gravel found at the entrance to the old gold mines that littered the countryside, remnants of the Gold Rush era.)
Despite all of his limitations, which in the 1940’s would have been far less accepted than in today’s world, he finished school and went to teacher training college.
After completing his training he travelled to India where he forged relationships with local schools, which would last a lifetime. When our family traveled there in 1988, to visit a small village school in Tenali, eight hours by train from Hyderabad, the whole village turned out in honour of the man who had kept their school supplied with books for more than 20 years. There was a brass band, a parade and speeches, all for my dad. At 15, a petulant teenager who thought he was a drag, I was astonished by the fuss they made of him.
Dad lived and worked in England for much of the sixties, travelling all the while and returning to Australia via Russia, Mongolia and China on the Trans-Siberian Railway (it was still the Cold War era and not a too many Westerners travelled that part of the world).
Back in Australia he went to work for a prestigious boarding school and set up a centre for children with special learning needs, such as dyslexia, which is still going strong today, over 30 years later. He created a edited a journal for education professionals, and in 2010 was awarded the Order of Australia medal for his dedication to helping kids with learning difficulties.
Aside from his professional successes, he has also been a man with a great passion for life, and all its pleasures. As a result of his extensive travels he had a network of friends and family across the world, who we would stay with on our travels and would visit us in Melbourne.
Dad hosted fabulous dinner parties and pretty much every night of the week invited people home for “drinks and nibbles”. He loved word-play and double entendre, possibly less appropriate now than it was in the seventies (think Benny Hill). He called hors d’oeuvres “horse doovers”. And tomato sauce “dead horse”.
He was terribly inappropriate and had an autistic lack of social etiquette and would make really insensitive comments, which would lead to my mum kicking him under the table or gritting her teeth and hissing “Chris!”, to which dad would, in all innocence, reply “What?” When my son was being diagnosed with autism, and I read all about the symptoms, I said to my mum, I think dad has it too!
He was the penultimate absent-minded professor, leather elbow-patched tweed suit jacket and all. He also wore a tie. ALL THE TIME. My aunt screamed at him in incredulity one day “take your bloody tie off, Chris” – we were at the beach on a 35 degree day.
He loved to hold court at his dinner parties, sitting at the head of the table, cigar in hand (even though he didn’t really smoke), telling stories. He adopted the debonair, raconteur style of Cary Grant (even though in truth he looked more like Rolf Harris than a matinee idol).
Dad was cub akela at my primary school, at a time when only boys could be cub scouts. It was a co-ed school, it was the seventies, so dad just enrolled us girls under gender-neutral versions of our names. I was Chris, my friend Jessica was Jesse. We sure caused a stir when we turned up to the jamborees!
The cub camps run during dad’s era as akela are still notorious. It would be easy to judge them as irresponsible drunken orgies from the politically correct stance of today, and yes there was a lot of drinking and a bit of tent swapping (I found this out as an adult – who knew my childhood was like a soap opera? Okay, so maybe it only happened once, and it wasn’t my parents, but it just sounds so seventies!) but the kids were oblivious to all that and they are the fondest memories of my early life.
I remember going on my first school camp and being so disappointed that we were not allowed to run free, get dirty and muddy, swim in the dam and chase cows like we had on dad’s cub camps.
Dad was famous for his campfire stories. The kids would huddle around with their marshmallows on sticks, and the adults with their snifters of brandy, and dad would tell ghost stories, the fire casting sinister shadows across his bearded face – still haunts me to this day!
I remember one particular cub camp we were on the ferry to French Island, near Philip Island in Westernport Bay. The weather was feral, gale force winds, the bay chopped up like a wild ocean. Me and a few other kids were watching out the back of the ferry when we noticed these white tubs floating in the water behind us. It turns out the tubs (that had fallen off the back of the ferry) were the 500 marinated chicken wings, salad, and bread rolls that our Camp Mother, Paddy had prepared for Friday night’s dinner. (Now she’s another character I could write a whole story about, suffice to say for now, she set up the camp tables with red gingham tablecloths, pots of fake daisies, and silver champagne buckets!)
After we set up camp in the rain dad and I went to the local fish’n’chipper and he ordered 150 pieces of flake and chips and 300 potato cakes. The owner put a closed sign on his door and got cooking, we had cleaned him out of food at 5pm!
Dad’s love of travel was something he was keen to pass on to us kids. As mum was Irish we spent many Christmases in Ireland and England, and dad always made sure we stopped somewhere different on the way. It was this way I saw France, Belgium, Germany, USA, Canada, China, Hong Kong, and India.
Dad was fixated with Marilyn Monroe (and later Princess Di and Kylie) and would instill in me how misunderstood and intelligent she really was – to which I’m sure I responded “yeah, whatever Dad”, only to discover later on he was right. Did he see that same neurotic fragility in his own daughter? I doubt it; I don’t think he was that attuned to me, but who knows.
I think it must be really sad to lose someone you love suddenly and without warning. But I have to say there’s not a lot to be said for this slow, dehumanising demise either. I have said my goodbyes to dad many times over the past few years, every time he ends up in hospital now it feels like the end. Now all I can do is be there for him and give him as much love as I can, while I can. And every now and then something “tickles his fancy” as he used to say (usually a pretty, young nurse), the fog clears for a moment, and I see that rascally grin, and he makes a totally inappropriate joke, and know my dad is still there, somewhere.
Phew, that was heavy. Now, I feel like we need something emotionally and physically reviving.
I found a great book called “The Smoothies Bible”, this apple beet smoothie is designed to boost your haemoglobin and energy levels. And it tastes amazing.
Apple Beet Smoothie
(Adapted from The Smoothies Bible by Pat Crocker)
1/2 beetroot grated
1 apple grated
Small piece of ginger grated
1/2 cup frozen berries (I used mixed berries)
2 cups spinach leaves
1/2 tsp cinnamon
2 tsp maca powder (optional)
Sweetener (agave syrup, stevia, honey) to taste
2-3 cups water
1 cup organic cranberry juice
Blend ingredients and enjoy!