From time to time I drop into the local cinema on my way home from work on a Wednesday afternoon. It’s half price movie day and I take a chance on whatever turns out to be on offer when I pitch up. It’s a pretty random thing to do, but that’s part of its appeal and I’ve ended up seeing a number of films that I would almost certainly not have gone to see intentionally. The bad ones are improved by an ice-cream, the good ones leave my mood improved no end and the challenging ones make me think. Sometimes they make me cry.

This was one of those weeks. The film was The Father, starring Anthony Hopkins as the main protagonist (Anthony) and Olivia Colman as his daughter (Anne).

Reviews describe this film as Hopkins’ performance of a lifetime and a ‘devastatingly empathic portrayal of dementia.’ I found it beautiful – and desperate – and heart breaking – and confronting – and altogether too close to home. The overwhelming feeling was of watching a mind coming undone, experiencing Anthony’s increasing confusion and disorientation and never knowing quite what’s real and what’s not. It was unsettling, to say the least.

MiL often tells us that she finds her life both frustrating and confusing. She says she feels unmoored, as though all her familiar anchors are drifting out of reach – or are no longer recognizable. We nod sagely, sympathise and support, feeling that we understand – at least to some extent – what she means. Having read up on Alzheimer’s disease, we know it progressively destroys memories and abilities and that it’s irreversible. So her feelings aren’t unexpected.

But this film put some of those conversations into a more relatable context. Writer-director Florian Zellar catapults the audience into experiencing Anthony’s shifting realities with him – both those inside his head and in the world around him. We end up about as confused as he clearly is as we all try to make sense of the conflicting situations and information. It was uncomfortable. As was the realisation that my ‘understanding’ of MiL’s situation is, at best, limited.

On my way home, Dylan Thomas came to mind. ‘Do not go gentle into that good night,’ he says. And I couldn’t agree more. Anthony’s almost violently expressed frustration and fear, confusion and uncertainty seemed all too reasonable. He should rage, rage against all the points of light going out for him, day after day, leaving him less than he was.

Any day in which MiL feels connected to her life in some way, rather than a confused passenger waiting for the right stop, is a good one. And no matter how pragmatic I am, how full that half-full glass can be made to seem, it’s a desperately sad thing to watch dementia claim someone dear to us.

Rage, rage against the dying of the light!

Earlier this week I was chatting to BronS at work about websites, blogging and inspiration. I had just finished read Americanah by the fabulous Chimamanda Ngoze Adiche and was rhapsodizing (a bit), which launched us down the rabbit hole of discussing books and authors. It turns out that Bron’s a freelance journalist / book reviewer and met Chimamanda many years ago to review her first book, Purple Hibiscus. Synchronicity, much? Anyhow, by the end of our chat I’d made a note of another Nigerian author (also interviewed by Bron!) and now can’t wait to read Chris Abani‘s memoir.

But back to websites, blogging and inspiration. Bron had come along to learn how to set up a wordpress site, but was a bit hesitant. So I showed her mine as an example of not-too-hard. This in turn led us to talking about blogs, blogging and inspiration for content – and somewhere along the line I confessed to having lost ‘the spark.’

I hadn’t actually articulated this to myself until that moment, but it just came tumbling out. I heard myself tell her about my head being so full of things relating to MiL, to ageing and dementia and support, to how the family copes (or doesn’t) with her day to day incremental loss of self, that when I sit down to write it seems that’s all that’s there. “Since I’m pretty sure no-one wants to read about all that, I’ve mostly stopped writing,” I confessed.

Bron’s response was, “Just write about it anyway! You might be surprised at what people will find interesting.” And of course she’s right. I wrote a whole book about hips and suchlike just to get that saga out of my head – and this is really not that different. It won’t change anything (as far as MiL goes), but perhaps it’ll be cathartic and get rid of at some of the noise rattling around in there.

There are so many things about ageing and working with seniors that could be explored while I’m about it, actually: the lady at the pool who has a 104 year old mother, whom she describes as ‘a heritage attraction in her own right’; another pool-friend who has an 88 year old live-in MiL with terrifying teeth and no English; how so many seniors feel increasingly invisible and sidelined as they age; or the marvelous realisation that age provides the freedom to ignore many of the protocols that previously seemed to rule our lives. And so much more.

Thanks, Bron – I’ll give it a go. Watch this space, folks – and tell me about your experiences with ageing – or the aged.

Meantime, to quote one of my favourite authors:

All this and more.

Woke up this morning, smiled with the rising sun, two little birds pitched on my doorstep… singing sweet songs of melodies pure and true, saying, this is my message to you

Who knows why Bob Marley & the Wailers popped into my head this morning – perhaps it’s because I’ve been trying to learn to play it on my uke. Or perhaps it’s because the birds really were singing – and whistling – and laughing (this is Australia, after all!). Although, when I opened the blinds, there were more than two and they were in the trees, on the wall and on the power lines, not the doorstep.

Looking out at the front garden, the canna lilies captured my attention. These stunning yellow flowers on their tall stems, surrounded by lush leafy foliage, bobbing cheerfully in the morning breeze, brought an instant smile to my day. The smile – and its source – made me think of DaughterDearest. Whilst cannas probably aren’t her absolutely favourite flower, she’s the reason we have them growing (so prolifically!) in our garden.

Many years ago, when we first settled in Perth, DD discovered yellow cannas in a friend’s garden and promptly ‘souvenired’ some to plant at home. We moved house twice more after that and, each time, she dug up some of the canna rhizomes and replanted them into the new garden, where they took off without any hesitation.

Cannas aren’t actually lilies at all, but are related to ginger and banana plants. Their rhizomes are edible – although DD has researched this and tells me they need to be boiled or baked until slightly translucent. Possibly not my first food choice, but good to know. These glorious plants are survivors, thriving wherever they land, flourishing and making the best of whatever space they have available. No wonder they bring her to mind!

This set me to thinking about other people in my life and whether I associate any particular flower with any of them – and, yes, I do.

BoyChilde has had an ongoing love affair with cosmos for most of his life, having discovered them growing wild on family camping trips when he was quite little. These hardy little plants flower along the roadsides and in spring and again in autumn in many regions in South Africa. The pink, white and cerise (dark pink) flowers are so ubiquitous that many people consider the plants native to South Africa, although they actually originate from South America. The flowers symbolise order and harmony, are considered to be synonymous with tranquillity, peace, harmony & love, and are the flower for BC’s birth month. Coincidence? Hmmm…

This brings me to Sibling#1 – when she was a sweet young thing, carnations were her flower of choice. But when I think of her, it’s proteas that come to mind. These plants are native to South Africa, although they belong to the same family as the Australian Banksia. They symbolise ingenuity, diversity, transformation and courage – all of which is spot on. They’re also beautiful, have a heart of gold and perform well in wide range of conditions 🙂

Finally, BFF loves sunflowers, although for me she always brings frangipani to mind. I must admit that the first time I really paid attention to the beauty and fragrance of frangipani flowers was when I saw them in BFF’s bridal bouquet and, in edible form, on her wedding cake. Since then I’ve seen her grow these tropical tree/shrubs from cuttings and supervise their replanting; I’ve learned that they’re surprisingly easy to grow and, just recently, that they symbolise devotion, positive energy, strength to withstand tough challenges.

So, does this mean that the flowers we relate to – or relate others to – can somehow provide insights into a person’s character? I find that implausible. And yet… in the four instances I’ve sited, it works. Perhaps just the eye of the beholder?

I had a great day out last week and felt quite inspired by the end of it to write about how fortunate we are in WA at present. We go about our business in a rather laissez-faire fashion, visiting friends, attending events/workshops, enjoying meals out and about and travelling within our borders. We (mostly) maintain the 1.5m social distancing, use hand sanitizer liberally and flinch if anyone coughs or sneezes, but we’re largeley behaving as though everything is pretty much as normal.

I was going to elaborate on some of these happy-making thing… then I read a social media post a friend in Melbourne shared and felt a strong surge of what I can only describe as survivor guilt. Here I was being upbeat and positive, using public transport without a mask, going to an art workshop and a live jazz event, back at the indoor pool exercising – and all whilst many, many other Australians are struggling to just get through the day.  In that moment it felt it inappropriate – wrong, even – to be enjoying myself and feeling so fortunate when, just on the other side of the country, things are anything but rosy. This is rather how I felt during the bushfires earlier this year, but then I could fundraise and send some tangible assistance across to Gippsland. Now I somehow just feel guiltily helpless.

Melbourne has been in lockdown or partial lockdown for so long that people are all out of spoons, the capacity to cope and get through each day stretched wafer thin. Melbourne friends confess that they get irritated when people say ‘we’re all in this together,’ because the Melbourne ‘this’ is a very different kettle of fish to ours. There they’ve run out of enthusiasm for baking bread, home decorating, zoom and face-time, revisiting random old hobbies and even cat videos (!). As for friends/family elsewhere urging them to keep their spirits up, saying it’ll all be over soon – that really takes the cake!

Don’t get me wrong: they’re not complaining about complying with the regulations – they’re just tired. So very, very tired.

And it’s not just Victorians. This applies to people in every region and country where movement and activities have been put on hold in the interest of public health and the greater good.

Yes, isolating definitely works. If people aren’t shuttling all over the place it’s easier for authorities to track pockets of infections and to manage treatment and quarantine. WA has shown this to be the case over the past many months of no community transmission. But it’s not easy and it hinges on is for people to have a clear understanding what Covid-19 actually is, what their rights and responsibilities are, and for those in charge to have a coherent (but flexible) plan to manage the situation and disseminate accurate and up to date information to the public.

On that note, hats off to our local (WA) pollies for coping remarkably well under sustained pressure both from the Federal Government and from some elements of the business sector. (Add congratulatory emojis of your choice here).

However, as at 24 September, Victoria was home to 20,105 of the 26,983 confirmed cases of Covid-19 and 773 of the 861 associated deaths reported in Australia since 22 January. On the upside, only 14 new cases (and 8 deaths) have been reported there in the last 24 hours – so the current quarantine lockdown strategy is definitely improving. The Victorian Premier continues to urge residents to go and get tested if they have any symptoms at all, no matter how minor. About 90% of results are made available within 24 hours, which is a remarkably fast turnaround.

So back to my friend in Melbourne: she too is tired – and more sleep is not the answer! A saving grace through lockdown(s) has definitely been her cat, which has provided companionship, non-judgemental affection and lots of amusement. But there are only so many conversations you can have with a cat – even a really cute one! Luckily she’s recently been able to have some sustained in-person contact with another human – and the joy she felt at just that interaction was enormous. These so-called ‘social bubbles’ were initiated on 14 September, allowing people living on their own to visit one another at home. Although a night-time curfew was still in place, it’s made life more bearable for many who have spent wayyyy too much time on alone of late. **Household bubbles are next on the agenda.

Writing about this made me realise that the survivor guilt that washed over me was uncalled for. What’s needed from all of us is a better understanding of what people elsewhere are going through, more sensitivity from us all in how we respond, and a real appreciation of how fortunate we are in our Fortress WA bubble – for now, at least.

I therefore reserve the right to make the most of glorious WA while we can and am very grateful to all Sandgropers for being diligent in complying with the Health Dept’s suggestions. Long may our little bit of Pollyanna-land last!

Beautiful WA

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**More on Victoria’s roadmap to recovery here. Some insights on living with Covid-19 lockdown for extended periods, here. And a short video to get the message across regarding how easily the virus spreads – in case it’s not already abundantly apparent!

Notice the red t-shirts!

Over the past weeks we’ve been spending a great deal of time with Mil, listening to stories about family members, friends, places and experiences from the past that remain important to her. It’s also brought us up to date on how narrow her world has become and just how much ground she’s lost over the past few years.

Mil tells us that there are now such big blanks in her memory that it’s like looking into the void. It’s sad and awful – but so much worse for her, particularly combined with rapidly failing eyesight and some hearing impairment. She feels lost, she says, helpless and a burden to everyone around her as a result of all this. 

My heart aches after conversations like these. We’re left feeling helpless in the face of the inevitability of Alzheimer’s disease and the long, slow goodbye to someone we love. It’s beyond sad to witness someone gradually disappearing before our eyes.

This all-pervasive feeling of sadness led me to the work on grief and grieving done by Dr Elisabeth Kübler-Ross. She documented how, broadly speaking, we process the landscape of loss via a number of emotional stages, starting with denial.  This, she said, is often followed by anger, then negotiation or bargaining to try to attain a different outcome or at least some respite. When this fails, depression very often sets in – a period of profound grieving for all that is lost or can’t be achieved. According to Ross, it is only after travelling this terrain in part or whole, that acceptance is likely to emerge.

Like grief, dementia has a number of stages to it, manifesting in different ways from person to person and progressing at different rates. But grief has a direction, the possibility of an end in sight. Dementia, however, is more like a whirlpool that drags the person with the affliction down in ever-diminishing circles. It sucks their understanding and sense of self away step by step, each of the phases incrementally worse than the previous one.

Navigating this landscape is so very much more dreadful than that of other sorts of grief. With dementia, the grieving process never seems to get to the point of acceptance for the person with the disease or, perhaps, for their family. Each realisation of loss brings with it a renewal of the cycle of grieving.

What can family members, friends and other bystanders actually do to help? Dementia Australia suggests planning ahead – but realistically, how can one plan for this? Certainly advance care planning, including ensuring that a will and clear health directive are in place, takes care of practical matters. But how can anyone manage the day to day reality of it all?

We’ve realised that for now, being present, flexible and positive is all we can do. Yesterday was a good day. We all went out for a birthday lunch and we all had a good laugh over something completely random. Seeing Mil happy brightened the day for everyone and made it really clear just how important it is to be as upbeat and to make the most of every positive moment.