Dancing in the twilight

Cheating ourselves of our best chances by not owning the ageing and end-of-life processes

In care-related fields, we put a lot of ownership on the person who is ageing or dying for knowing their options. We fan this out to their nearest and dearest. But what of the community and society?

Most people want to die at home and age-in-place. They want individualised care, choices, a hand in the decision-making. They don’t want to leave the family with additional trauma, terrible memories and a series of big fat invoices.

The problem we often find is internal ageism, ageism and a reticence to face death tends to severely limit these options. And that loved ones who fear the ageing process and what it means share these sentiments. But it’s also carried across in the siloed nature of the ageing, disability, mental health, disease and illness, and end-of-life discussions.

Unless you work in the space or you end up facing it through the passage of time or some kind of event, the wider community is happy to pretend there’s nothing to see here.

There is something to be said for the mantra of the emergency services: preparedness, prevention, management, and recovery.

We may not be able to recover from old age or a life-ending scenario, but we can most certainly ace the first three to the point where we reduce the recovery for the people we care about.

But what does that look like in real terms?

Preparedness –

·??????Planning ahead to reduce the impact of an issue you could face

·??????Creating a safe environment with the right tools, support and assistance to cope with what you experience

·??????Having a contingency in place (Plan A, B and C) to cover for as many eventualities and scenarios as possible

·??????Actively looking to reduce the impact of stress and anxiety so it doesn’t cloud thinking or impair decision-making

·??????Learning, reading, asking questions and being involved in the ageing and end-of-life process prior to full engagement.

Prevention –

·??????Utilising maintenance such as exercise, healthy lifestyle choices, and challenging cognitive decline as a way to mitigate risk and preserve quality of life

·??????Setting goals to enhance skills, strengthen the body and mind, and promote optimism and forward-thinking

·??????Strengthening capability by actively participating in planning and processes

·??????Relying on community to help bring everyone together to ensure the best outcomes

·??????Reframing the role of ageing and end-of-life in our society so that disclosure is as normalised as rendering assistance.

Management –

·??????Recognising the situation for what it is and dealing with it appropriately

·??????Assessing the limits to our abilities and keeping them at the forefront of decision-making

·??????Accepting that we cannot always stay in place, defend our territory or be exactly where we want to be through forces beyond our control

·??????Ensuring we have the paperwork and the funds to be able to have a proper plan in place

·??????Not treating that plan as “set and forget.” Recognising that true plans are never static and need reviewing, updating and even pivots on occasion

·??????Drawing on the community and services available instead of treating ageing and dying as solo pursuits.

Recovery –

·??????Recognising the choices we make as we age and how we die directly impact the people around us

·??????Putting not only person-centred care at the heart of our planning and decision-making, but also adopting a community approach that assesses the needs of those we care about ?

·??????Reducing the trauma associated with the last impressions we make wherever possible

·??????Acceptance of the ageing process, our limitations, and the role we play in making it easier on ourselves, the medical and care professionals, and others who tend to our needs and bare witness to the changes.

When we duck the idea of ageing or death, we don’t take the steps that support us to do them well. Repeatedly, we have seen people who simply right off changes to mobility or their body as an ageing process. They don’t challenge these changes or take steps to slow the physical or mental effects of ageing.

Sadly, some people also succumb to their own internal ableism and ageism, ignoring changes until it’s too late and a much higher level of care is required. Or they begin to invest in the decline, hastening the approach of further risks and doing what the disability community sometimes terms, “loving the symptoms” as a form of attention-seeking or maladaptive coping mechanism.

But can we blame people for not flying the flag of ageing pride? We live in a society that equates ageing with invisibility. That labels elderly people as irrational, out of touch, and socially devoid of conscience. Who can’t vote, work or use a piece of technology to save themselves. We choose to hold up Betty White or Iris Apfel as inspiration porn as we cover everyone else in the same amorphous grey blanket of incontinence and irrelevance.

We fail to recognise that society doesn’t hear from people as they age, or they die because we’re not willing to listen. Or we’re not willing to ask the right questions because we’re far more concerned with personal discomfort or arbitrary ideas like civility.

What we learn from ageing and dying

If you’ve ever attended to a dying person, you’ll realise how much is stripped away. In the proceeding weeks and months, things that mattered start to find their rightful place in the “not-necessary” pile. Life is this big expanse. Potential seems endless, problems seem larger than life, and the minutia of the world invites scrutiny in ways dying does not.

Life is a place where we search for meaning by creating a maze of distractions and obligations that takes us far, far away from the core bones. We allow it to be complex and complicated. We layer it with moments of routine, order and intricacy the family dog will never understand.

And we often don’t realise that until someone gets a cancer diagnosis. Or if a life-limiting, life altering event comes our way. Or we notice the next time we see that elderly parent or grandparent there is a pause in the sentence as they pull on the words they need to say. Or we see a tremor in a previously steady hand or a softness in the way they move. It is the syrup-bellied horror we feel when we receive the phone call that changes everything. The accident or act where someone dies prematurely that burns our comforting denial and ignorance away.

All of a sudden, the embroidery we embellish our existence with starts to strip away.

And yet, we ignore it. We call that moment a difficult day. We focus on overcoming disease and disability. We don’t look at the ageing edges as they start to age.

As a society, we have to decide that ageing and death is part of our lives. We have to take steps to prepare for the inevitable, to prevent the unnecessary difficulty when we do face it, to manage it well and reduce the risks and impacts, to begin to recover a healthy relationship with ourselves, our community and the acts of ageing and dying. Then, and only then, can we claim we’re a well-rounded, psychologically healthy, and supportive society.

How can we make the change?

For professionals, consider:

·??????What are your attitudes and policies that actively reduce ableism and ageism in the workplace? Are you walking the walk with that talk?

·??????What do you do to normalise the care planning conversation in your workplace with your staff? Especially if your workplace carries higher risk of disease, disability, illness or premature death

·??????Are you advocating for better conversations about ageing, death and dying by challenging the narratives and assumptions you face when you tell people what you do? Are you educating others to the benefits of approaching ageing and end-of-life with realistic perceptions and healthy interest?

·??????What stories are you telling? Are they always about frustration, stress and inspo porn? Or are they a well-rounded discussion of your working life?

For people, consider:

·??????At what age are you introducing your loved ones to the ageing and dying conversation?

·??????Are you educating your children on ageing, death and dying in an appropriate way?

·??????Are you challenging your own inner ageism, ableism and fears?

·??????Are you using care plans, goals and a focus on living your best future to inform your physical, emotional, psychological, cognitive, social and financial decisions today?

The more we believe ageing and dying are part of a happy, healthy lifecycle, the more we will be able to greet those stages with confidence when they arrive.

If you need assistance in getting the balance right, we’re only an email or a phone call away.