Stronger Together — Advocating for an Ageing Parent

My mother is eighty-six years old. She has survived a heart attack, a stent through her femoral artery, a femoral bleed, heart failure, and just recently an acute kidney infection brought about by Covid. She has also survived the aged care system.

She has also survived the thing nobody puts in the discharge notes: the accumulated trauma of every one of those experiences, living in her body, waiting to be triggered by the next time someone in PPE walks through the door.

I have been her advocate, her daughter, and for the past four years her full-time primary carer. I returned to study Community Services Cert IV to better understand how to navigate that system — for her, and for two other parents before her. I think I know how it works. There are still days I silently scream into a pillow, suck it up, and keep going.

This is what I’ve learned. I’m writing it down because most families arrive at a crisis without any of it. And the system is not designed to hand it to you.

THE DOCUMENTS YOU NEED BEFORE ANYTHING HAPPENS

Most families don’t think about legal documents until they’re sitting in an emergency waiting room at midnight. By then it’s too late to complete them properly.

Here is something worth knowing: if you are in emergency with an ageing parent, hospital staff may come to you with these documents while you are exhausted, frightened, and barely holding it together. A young hospital worker came to see my mother during her recent admission specifically to talk about advanced care planning and enduring guardianship. He told me I was very well informed and that it was rare he came across a family member who knew what these documents were.

That stopped me. Rare. Meaning most families are handed these forms in a moment of crisis and asked to absorb them cold.

Don’t let that be you. Familiarise yourself with both documents now, on an ordinary afternoon, before you need them.

There are two that matter. Most people know about one.

Advanced Care Planning

An Advanced Care Plan records what your parent wants if they can no longer speak for themselves — what treatments they would or wouldn’t want, what quality of life means to them, what they would consider worse than death.

It is not a conversation for the whole family gathered around the table at once. That’s confronting and it rarely works. Most older people aren’t ready for it — it feels like an admission of decline, of needing help, of mortality. Many will resist.

The framing that keeps a parent at the table is not this paperwork is important. It is this: you have lived a good life. This conversation is about making sure what comes next reflects that. It’s not about giving up — it’s about dignity. And it’s a gift you can give the people who love you, so they know how to stand beside you.

That reframes the whole thing. From a legal task into an act of love, in both directions.

It’s a conversation for one family member or trusted friend — the best communicator, the one the parent trusts most — done gently on an ordinary afternoon without urgency, with a cup of tea. When my mother is frightened or frustrated or angry, I remind her that we are stronger together. That has been our touchstone through all of it. I do this through love and never duty — because duty isn’t sustainable. Love is something you can lean into. Hold a hand. I know that’s easier to say when a parent doesn’t have dementia. For those families, the conversation requires even more patience, more time, more gentleness — and often, more help.

Involve the GP. When I completed my father’s plan during his Parkinson’s fog, his GP sent me the clinic’s own document — more nuanced than the standard government form, with a checklist that anticipated scenarios the generic version didn’t. Together they gave us something that actually reflected who my father was and what he wanted.

Here is something the system won’t always tell you: the Advanced Care Plan is a starting point, not a substitute for an advocate in the room. The document is a static instrument — it cannot be probed, negotiated with, or asked to weigh up a situation that didn’t exist when it was written. Doctors, in practice, often favour decisions made in consultation with family precisely because a human being can respond to nuance in a way a document cannot.

The plan matters. But it needs a person behind it.

For information and support: Advance Care Planning Australia — www.advancecareplanning.org.au — National Advisory Line 1300 208 582

Enduring Guardianship

This is the document most families don’t know about until they need it. And by then, they needed it yesterday.

Enduring guardianship with medical decision-making authority means that when a doctor needs to speak with someone about your parent’s care, they speak with you. Not the exhausted, frightened, medicated person in the bed. You.

I didn’t have it during my mother’s recent hospitalisation. I assumed power of attorney was enough. It isn’t — not when a doctor arrives at 10pm and needs answers right now. The second admission made that clear. The moment she was home I got the paperwork together, had it formalised, and I’ll be taking a copy to her hospital file the moment it arrives. Anyone who picks up that file will know there is a named guardian with legal standing. When a doctor arrives with questions she’s too exhausted to answer, she has the right to say: speak with my daughter.

The person named on that document needs to have the parent’s full confidence. Not just be the most organised family member. The most trusted one.

Don’t wait for a crisis to find out those two things are different.

In Tasmania: Service Tasmania outlets register enduring guardianship documents. Forms and information at Tasmania Legal Aid — www.legalaid.tas.gov.au — or call 1300 366 611. Forms vary by state — for your state visit www.advancecareplanning.org.au

IF YOU RAISE YOUR VOICE IN AN EMERGENCY DEPARTMENT CORRIDOR, YOU WILL BE ASKED TO LEAVE.

And leaving means abandoning your parent behind closed doors.

So you don’t raise your voice. You breathe through it. You find another way. Persistence — quiet and relentless — is more powerful than volume. You ask the same question a different way. You find the nurse who has a moment. You make yourself known as someone who is across this, without making yourself someone they want to avoid.

This is advocacy. It is not aggression. It is not passivity. It is informed, calm, and absolutely immovable.

Your parent is not a passive recipient of the system. They are your equal partner in their own care. Treat them that way. Insist the system does too.

OLDER PEOPLE ARE NOT JUST BODIES TO BE FIXED

The older a person is, the more trauma they carry. A hospital admission is not a neutral event for an eighty-six year old woman who was isolated during a heart procedure, pinned to a bed with a compression device, told to stay still. When that same woman tests positive for covid and is isolated again, in the same kind of room, with the same PPE-clad staff, her body doesn’t know it’s a different year.

Fear impedes recovery. Trauma triggers physiological responses. An older person who is frightened and alone will not rest, will not heal as well, will not be able to tell you accurately what is wrong.

Trauma informed care is not a luxury. It is medicine. And advocating for it — clearly, calmly, to every person who enters the room — is one of the most important things you can do.

I explained my mother’s history to every nurse and doctor I could reach. Some heard me. Some nodded and moved on. I kept explaining anyway.

THE GOAL IS TO GET THEM HOME

A hospital is not a safe place for an old body to stay longer than necessary. The longer an ageing person remains in hospital, the greater the risk of hospital acquired complications — infections like pneumonia, delirium, muscle deconditioning, falls, and a loss of the will to recover. These are not rare outcomes. They are predictable ones. And families who understand this are better placed to push for discharge planning from day one.

Ask the care team daily: what needs to happen before she can go home? What are the barriers to discharge? What supports need to be in place when she leaves? What is the plan and when will it be reviewed?

Families who ask those questions get their person home faster. Families who wait to be told often wait too long.

THE NIGHT A DOCTOR CAME WITHOUT CALLING ME

On our second recent trip to emergency, my mother finally got a bed after eight long uncomfortable hours in the waiting room. Before I left I gave specific instructions, documented in her file: if a doctor came to speak with her about her condition, I was to be called. No matter the time.

A doctor came late that night. Nobody called me.

My mother rang me afterwards, frightened. The doctor had asked her to explain her own medical history — to a woman who was exhausted and barely knew what day it was. And then said: you don’t have an advanced care plan. What do you want us to do if your heart stops?

I understand the boxes need ticking. What I cannot accept is that it was asked of a frightened, elderly woman, alone at night, without her advocate present.

That is not trauma informed care. That is a hierarchy that forgot a person was in the bed.

Document your instructions. Put them in writing. Make sure they are in the file. Not as a threat — as a protection.

THE LONGER ROAD: ADVOCACY BEYOND THE HOSPITAL

A hospital admission is often just one point on a much longer road.

My father’s road looked like this: hospital, respite care, home, respite again, residential aged care, falls, hospital, and finally the question no family wants to face — when the medical system wants to fix something that is too broken to fix, and what advocacy looks like when the goal shifts from recovery to dignity.

That road took years. And at every point I was grateful for what I knew. I think often about the families navigating the same road without it.

The aged care system in Australia is under profound pressure. There are not enough carers. Not enough places. Not enough people who understand the complex needs of older Australians — particularly those living with dementia, who deserve specialised, dignified care and too often don’t receive it. Families wait months, sometimes years, for home care packages. Decisions get made in crisis that would have been made very differently with time and knowledge.

What is rarely said plainly is this: older Australians have human rights. The right to dignity. The right to be treated as a person whose life has value, not a body to be warehoused until it stops. A life lived well deserves an ending that reflects that. As an advocate for an ageing parent, you are the bridge between your parent losing that dignity or keeping it. That is not a small thing. It is everything.

The documents we’ve talked about — enduring guardianship, advanced care planning, power of attorney — are not just for hospital admissions. They are for the whole journey. They matter when a parent can no longer make decisions about where they live. They matter when a care team needs direction. They matter when a medical team is doing everything they can and the family needs to say: this is what she would have wanted.

Be armed. Be ready. Be informed.

Not because the worst will happen. But because when it does, you will already know how to advocate for the person you love.

Jean Kittson’s We Need To Talk About Mum and Dad is a practical and deeply humane guide to this territory. Written before the significant aged care reforms of November 2024, some of the system detail has changed — but the human experience it describes, and the wisdom it offers families, hasn’t. www.jeankittson.com.au

WHAT EVERY FAMILY CAN DO RIGHT NOW

Know that you have the right to ask questions. To request a specific test. To ask about medication changes, about what the plan is and when it will be reviewed. You are not an inconvenience. You are part of the care team whether the system acknowledges it or not.

Ask for plain language explanations of every drug, test, and procedure. Jargon is not expertise — it is a wall. You have every right to ask them to take it down.

Don’t wait to be told what’s happening. Ask.

Don’t be shushed.

THE ANTHROPOLOGY OF IT

Caregiving is still largely women’s work in this country. Unacknowledged, largely unpaid, invisible in the economic data and the policy frameworks.

The world shrinks to the size of the person you are keeping alive. Your needs become optional — not because anyone takes them from you, but because you stop reaching for them. You cannot show fear. You cannot say I’m frightened too. You hold it. You absorb it. You keep going.

The isolation is total. And it is made entirely of love, which makes it impossible to resent and impossible to escape.

I am not writing this for sympathy.

I am writing it because the children of ageing parents deserve to know what is coming before they are inside it. Because older people in hospital are not bags of bones to be stabilised and discharged — they are people carrying decades of experience, trauma, love, and hard-won wisdom, who deserve to be treated accordingly.

Knowledge is power. Advocacy is the tool. And you are allowed to use both.

My mother, at eighty-six, after everything she has survived, deserves to be treated with the full dignity of a person whose life has meaning.

She does.

Yours does too.

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