Rage against the dying of the light

by ⋅ 2 Comments ⋅ Aside

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!

A good day

by ⋅ Leave a Comment ⋅ Aside

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.

Meanwhile, somewhere in Australia…

by ⋅ Leave a Comment ⋅ Aside

The last couple of weeks have been increasingly stressful for most people. Our vocabulary has changed to include words we would otherwise never, or at least very rarely, use. Conversations over the dinner table now revolve around panic buying and what on earth people plan to do with epic amounts of toilet paper. Strange times indeed.

Our evolving 2020 vocab

It’s clear that isolating yourself if you’re unwell is both advisable and sensible. This includes limiting contact with random humans, for sure, and keeping your hands good and clean. Try to avoid touching your face and do remember to keep coughs and sneezes undercover — into your arm or into a tissue (which you then dispose of in the bin straight away & wash your hands with soap and water for at least 20 seconds afterwards!). Tedious, but necessary. It’ll all get to be a habit in no time, so don’t stress too much.

Weeding, digging, chatting and enjoying some sunshine.

But it’s not all doom and gloom. Somewhere in Australia this past weekend, a bunch of friends turned up to help with a garden project. They donned gloves and sunscreen (some even wore hats) – just the usual garden precautions – then spent most of the day digging, weeding and erecting a retaining wall to keep the persistent (!) grass at bay. We had morning tea, a delicious shared lunch and some even stayed on to dinner. We took reasonable precautions in terms of contact and hand washing – and got all toilet paper related conversations out of the way early on so we could move on to more interesting topics. A good day. A smiley day.

Some words for 2020 that work for me.

Clearly not everyone wants to get involved in a random garden blitz somewhere in the ‘burbs (although you’d be most welcome!), but there is something we can all do. Basically, try to be the best person you can be – in whatever ways you have the capacity to do so.

We’re all in this together whether we like it or not, so be kind to each other – and to the people working hard in supermarkets and other areas to keep our society afloat. Empty shelves aren’t their fault.

Stay in touch. Perhaps pick up the phone and call one person every day – just for a catch up, for a ‘how’s it going’ chat to crack through the growing sense of isolation. Skype, What’s App and all the other apps – use them to stay in touch. Write a short note or draw a silly (or beautiful) picture and pop it in the post to your Nan or your friend or a co-worker — it’ll probably make their day.

If you have some food to spare for community members in need, this weekend would be a good time to roll it out. Foodbank is pretty desperate for donations right now and will take whatever you can part with. We’re taking a drive out there on Saturday 21 March at 12.30pm to drop stuff off, so feel free to drop some random tins/cereal/flour/rice/UHT-milk at our door or just inside the gate – or come in if you’re feeling brave (we have soap and paper towels to keep you safe and grok how to stand a metre away from visitors!).

We’ll get through this – even if we’re all in our own little hutches for the next while. And if anyone needs a hand with shopping – or a meal dropped off – or a batch of cookies to cheer them up, you know how to reach me – I’ll be in my hutch, crocheting another blanket!