Well, This Is What I Think

Some years back, we lost our Mother to Alzheimer’s.

She was a gregarious and loveable person, and we kept her at home for as long as we could, until her confusion and behaviours made it simply impossible.

In the end, in distraction, we found her a good old folk’s home, and with great difficulty, too, as the aged care sector in Australia is a nightmare to navigate successfully. And there she duly whiled away her final months – in safety, but often in tears.

The tears weren’t just “Sundowners” – a well-known mood-shift that occurs in Alzheimer’s patients, especially around late afternoon. Fading light seems to be the trigger. The symptoms can get worse as the night goes on and usually get better by morning.

It was distressing for her, for the care-worn staff, and for us, so we often used to try and time our visits for this time of day to give her a lift.

You can read more about it here: not to mention my own musings about ageing.

But her general distress was more than that.

Like a recent report in Australia revealed, she was one of 40% of old age home residents suffering habitually from depression.

The depression was caused by psychological dislocation – a loss of friends and family, a loss of whatever she could recall as “normal”, a loss of privacy, an inability to relate to the new world around her, or to make friends.

To get away from the psychobabble for a moment, in simple terms her biggest problem was that she was lonely. And in simple terms, there was very little anyone around her could do about it.

In the UK and now in Australia, TV series have revealed how teachers visiting elderly patients with a bunch of four year old pre-schoolers in tow is good for both groups. The elderly people experience physical and cognitive improvement, and improved mood, too. The kids just seem to love it. Care workers have known this for years – taking children, especially young children, into care environments is invigorating for the residents. Ditto animals, especially if they had companion pets before. They are both a dash of welcome reality, for people for whom reality has too often become dark and bleak.

As we move into a period where our aged care services worldwide are going to come under increasing pressure as the Baby Boomers start to age and die off, we wonder if we cannot find a better model for looking after our frail friends, family members and neighbours.

In less urbanised (and often poorer) environments, the aged stay in the community much longer – perhaps throughout their final days – cared for on an ad hoc basis by those in the village around them. They can wander safely, and access their neighbours, children, and animals.

They often still engage in food preparation, or piecemeal work.

For thousands of years, such elderly people have been loved and nourished in the environment they have lived in all their lives.

As a by-product of that situation, their lives are not endlessly prolonged by medical intervention which is freely available in care environments, but not necessarily to the long-term benefit of the patient. In a village in Africa, the Steppes, or Asia, an elderly person struck with an infection, or complications from a fall, may just fade away.

But in a Western care environment they are resuscitated, whisked off to hospital and then back to their care home, and regularly pumped full of prophylactic drugs.

So the question we need to face is: just because we CAN save an elderly patient, does that mean we should, if the point of saving them is simply to return them to a place that through no-one’s fault, they are uncomfortable and unhappy in?

There is another assumption that needs to be challenged, too, which is someone with a diagnosis of Alzheimers is someone who is gaga. This is simply not true. Increasingly, people live with Alzheimer’s for a very long time, buoyed up by better medication, exercise, deliberate mental engagement, engagement with other people and more. We are going to need to educate the public about the positive possibilities for people with dementia, and organise society so they are better integrated with the world around them. It is vital to their progress. And happiness. One thing that seems sure to us is that plonking them in “traditional” aged care will do little to prolong their useful life – and this is not to criticise the dedicated and skilful people that work in the sector. They do their best.

Ultimately, we need to ask “What is the most important thing for an elderly person with Alzheimer’s?” In our view, it is surely that they live out their final days with dignity and as much contentment as possible. Our current systems may provide the former – although they often do not – but very few people would argue that they do the latter.

A little contentment in our declining years shouldn’t be too hard to devise, but in our view we need to start rethinking aged care fundamentally, and now. Because right now, we are failing our older brothers and sisters, and it’s only going to get worse.

We need to think harder, and do better.