“It’s a funny thing when someone tells you what you already know and then you think, no, I don’t want to hear that…There’s a relief and then at the same time, it’s like no, no, I don’t want it to be true, I want it to be wrong.” Michelle Spencer.
Michelle’s mum is 85 and has Alzheimer’s. Michelle’s been her primary carer.
Michelle’s story is absolutely hers but it’s far from unique.
Many midlife women are the primary Carer of their aging parents and with women statistically living longer than men (current Australian estimates are 85.1 years for females versus 81.1 years for males), it’s often our Mum in our care after having spent years caring for our Dad.
But Mum living longer does not always mean she’s living as well in her final years.
Here in Australia, dementia is the #1 cause of death and Alzheimer’s is the predominant disease under that umbrella. Australian sources estimate that Alzheimer’s disease accounts for roughly 50–70% of dementia cases, although the estimate is not a precise 2026 national figure.
Many older people have mixed dementia, most commonly Alzheimer’s pathology together with vascular changes. Therefore, Alzheimer’s disease may contribute to a person’s dementia even when it is not the only diagnosis.
For Women: Around two-thirds of people living with dementia in Australia are women; the prevalence is approximately 1 in 7 in ages 80–84, 1 in 4 at 85–89, and nearly 1 in 2 at age 90 and over.
Midlife Unfiltered — The Dementia Series
This series exists because there’s still so much we don’t know - not just in the medical and research world, but in everyday, lived understanding. These aren’t conversations we typically have. So we’re having them.
In this episode I sit down with Michelle, who has loved not one but two people with dementia - her mum, who has Alzheimer’s, and her father-in-law, who had frontotemporal dementia and passed away in 2014.
Michelle and I hope that by sharing her story it helps you to appreciate what it’s like loving and caring for someone with Alzheimer’s.
If you’re loving someone with dementia right now, I hope this feels like a warm, understanding hug. And if you’ve already walked this road, thank you for your love and care.
And now…to this very honest and unfiltered conversation.
The Signs
The changes Michelle talks about here were signs that her mum was not herself. The woman she had known all her life who began to do things differently.
* She stopped learning and engaging with new things. An avid learner her entire life, this was very unusual. An early adopter of technology — it became “the computer’s fault.”
* She was not engaging as much - again, quite unusual for Michelle’s mum, who was always very social.
* When something felt different, she’d brush it off when asked to explore it a little more, for deeper understanding.
* Struggling more at home - not as organised as she used to be.
* Skills decay. Stopped going to the library. Struggled with her knitting. Trying hard, but not ‘winning’.
* Short-term memory failing - like remembering to take medication and falsely saying that she had.
The blessing in disguise - a heart attack. Michelle talks about why this was actually a blessing. It taught them to ready themselves for what lay ahead as her mum’s condition declined.
How Things Progressed
Michelle’s mum was living alone at home. A very independent woman — she wanted it that way. Here’s how things progressed.
4 years ago - minor assistance needed with a few household tasks.
2 years ago - more intense help needed, because she was:
* Losing weight, not eating well
* Wandering out of her home at night - the neighbours had been kindly keeping an eye on her
* Disoriented and getting lost when walking home
* A smoker - advice from Dementia Australia was invaluable here, to help keep her safe from setting the house on fire
* Burning food - literally catching the microwave on fire in the kitchen
With the help of good neighbours: they were looking out for Michelle’s mum, without her even knowing. One of them had a security camera aimed at his own front door and quietly repositioned an extra one to cover her mum’s door too. When she wandered out at odd hours, someone would just “happen to be there for a lovely chat”.
If there was more of that kind of quiet, dignified watching-out-for-each-other in the world, Michelle thinks everyone living with dementia would be safer.
Her safety was becoming a deep concern. Dementia Support here in Australia suggested to Michelle that it would be safer for her mum to be in a care facility.
Some Challenges
Caring for and loving someone with Alzheimer’s has enormous challenges. Conversations that are difficult and awkward to navigate. Here are a few that came up in our chat.
“Seeing the truth.” Her mum’s truth was not as Michelle knew it to be. Learning to accept that and to have conversations without confrontation.
It’s not lying, it’s their reality. Michelle credits speech pathologist Adria Thompson (of Be Like Care) for a reframe that changed everything: people with dementia lose the ability to lie quite early on. So when they say “I’m absolutely fine,” they believe it. No amount of “but I told you” gets through once short-term memory goes. It’s pointless. You have to meet them in their reality, not drag them into yours.
Masking It Well. For a long time, Michelle wondered if she was the only one who could see it. Everyone else thought her mum was fine because for a minute or two of conversation, she was. Her social skills and ability to have conversations were still rather good.
“I don’t want to live if I get dementia”. Michelle’s mum had previously said she didn’t want to live if she ever had dementia. She was a nurse her whole working life. She knew what it looked like.
Living at home alone. With her safety deeply compromised. Fiercely independent Michelle’s mum did not want anyone living with her.
Going into full-time care after a stint in respite. “I will call the police. I will go home. I will never forgive you.” A few days later, she was okay. Four months later, she said she was happy there. That it’s a nice place.
Love got them through.
Being in an Aged Care Home
Michelle and I go deep on this and talk about it very openly – myth busting.
Society’s stigma. This is a very real and unfortunate stigma that’s prevalent in our society. The judgement is unwarranted and so hurtful.
“I’m never going to do that. I would never put my mother into an aged care facility.” Until you do. Then perspectives change and the compassionate understanding comes with it.
In the right care facility, those with dementia and their carers can have very positive experiences and outcomes just as Michelle and her mum have. Not to say it’s an easy decision. Far from it. It’s bloody hard, and it takes enormous strength to make it and carry it out. But once settled, both patient and carer can do well. Well in a situation where there is often little light in the dark.
Let’s not sugarcoat this. A dementia condition is a downward slope of decline, with no cure. Ultimately leading to death.
You never know what someone’s story is. The reasons are as varied as the conditions that force our hands. Michelle talks about a family member who was adamant he didn’t want another family member wiping his bottom (and this is what it often gets down to, when someone with dementia can no longer take care of themselves). His preference was external help - the care facility option, when the time came.
So for goodness sake, don’t judge. Odds are and the stats are stacked here, it could be someone you love, and a decision you’ll have to face one day.
The Carer’s Perspective
We don’t fully appreciate what’s involved in caring for someone with dementia. The stress. The 24x7 care. The lack of sleep. The physical and emotional demands. It’s a lot.
Relationship strain, as the relationship changes. In Michelle’s case with her mum, the person she’d gone to for advice and care most of her life is no longer able to offer that the way she once did. Roles flip. They now need everything from you. There are countless examples of this, depending on the nature of the relationship involved.
And we grieve that loss.
Relationship repair. This is another benefit of getting external help. As we care for those we love with dementia, our relationship with them changes too from say, Mother and Daughter, to Carer and Care Recipient. With full-time care in a home, there’s a chance to revive some of that previous relationship. There’s still much to be done even once a loved one is in a facility, but you know they’re safe and getting the level of care you’re not equipped to give.
Carer’s guilt, embarrassment and shame. Why couldn’t I do more? Often carers have their own health conditions to manage at the same time, an added stress that makes it very difficult to deal with both. Michelle has POTS, a debilitating condition at times, which limits her ability to physically help and care for her mum.
Having the skills. We may be willing, but we may not be able. Dealing with someone with dementia takes a certain skill set, a capability, an experience, that ensures the right standard of care is given in the right way. As family carers, most of us just don’t have that.
Burnout and loss of empathy. Michelle was honest enough to tell a psychologist she felt herself becoming less patient, less empathetic. The response? That’s not a character flaw. That’s burnout. Care tends to fall on one person more than others in a family and let’s be honest, it’s usually a daughter.
Carer’s allowance is a joke. Michelle doesn’t hold back. There’s little rest, and often little thanks. And when carers do reach their absolute limit it’s sometimes cruelly called “granny dumping”. Michelle asks that instead of judging, we stop to consider what it must have taken to get there. Because it’s rarely a person who doesn’t care. It’s a person who has nothing left to give.
The Financial Reality
Nobody warns you how expensive this can get, or how complicated. A few things worth knowing, eyes wide open:
* It can cost a huge amount to secure a place in residential aged care, and for many families that means selling the family home.
* Funding models differ between facilities. Some require you to essentially buy in like purchasing a unit, which they later sell on your behalf, taking a commission. Others charge a lump sum plus a daily fee, with the lump sum refunded when the room is no longer needed. Go in eyes wide open to how things are done.
* Some places set aside beds for people without significant assets. Michelle’s mum, on a modest pension with limited savings, was eligible for one and there was, importantly, no difference in the standard of care she received.
* The rules are changing. New aged care legislation has recently come into effect in Australia (November 2025). Do your own research on what it means for your specific situation don’t assume previous rules still apply.
* A financial advisor who understands aged care funding is worth their weight in gold. Michelle’s family had one help move money into the right ‘buckets’ so care could be funded fairly, without short-changing the healthier parent.
The Care Team
Home care sounds simple, on paper. In reality, it’s a small army, and someone has to run it.
* Exercise physiologists and OTs for movement and assessments
* Nurses for medical care, and occasional doctor house calls
* Support workers and personal care attendants for day-to-day needs
* All from different organisations, different silos, different schedules
And when one of them cancels, is sick, unavailable, someone still must show up. Michelle has literally left a client’s funeral mid-service, jumped in a taxi, and rushed across town to give her mum a single tablet, because there was no one else. Coordinating all of this is close to a full-time unpaid job. ‘Keep people at home and we’ll send help’ only works if somebody, usually you, is doing the project management.
Diagnosis
Because Michelle’s mum’s social function stayed great as other aspects of her behaviour and capability declined, meant Michelle’s mum was very good at masking her dementia.
A diagnosis was finally given but Michelle had to persist sighting changes in her mum and about her fears for her safety. Getting this diagnosis took time. Michelle felt she had to fight for it. Compassionately, and with real sadness the diagnosis was given - the GP had known her mum for three decades.
He also warned Michelle that the decline was accelerating fast, after a very slow start.
Michelle describes it as a strange kind of relief and grief in the same breath - someone finally saying out loud what you already knew in your gut, when part of you was hoping to be told you were overreacting.
Speaking Up: Pain & Advocacy
One of the hardest and most important threads in this conversation is how do you know if someone with advanced dementia is in pain, when they can no longer tell you?
Michelle’s father-in-law had a broken hip for three days before anyone realised. He simply couldn’t communicate it. I shared that my dad’s metastatic bone cancer went unnoticed for a long time too - but looking back, his personality changed. He got angry, which was completely unlike him. That anger was the communication. Once the pain was addressed, the anger left with it.
With Michelle’s mum, staff had noticed subtle restlessness. She wasn’t complaining outright. Michelle pushed to increase her pain medication. The result surprised even the doctors. Her mum became brighter, more herself, less withdrawn.
The lesson: you have to speak up. Care staff are skilled, and often exemplary but it’s a 24/7 job spread across many residents and shifts and no one can catch everything. You’re the one with the long view of who this person really is. Be persistent. Be a little difficult if you have to be, just do it with respect. That relationship with the care team is a long ride and it works best as a partnership.
End of Life Choices
A DNR (do not resuscitate) conversation, mid-heart attack, with the paramedics asking Michelle whether her mum should be resuscitated if she arrested on the way to hospital. This is a scenario we often don’t talk about but happens.
Later, as things progressed, the family worked slowly and gently with her mum to put a plan in place she was comfortable with - no aggressive, futile intervention if she couldn’t be brought back to near her current level of function. This thankfully happened before her dementia took hold.
In that regard, the heart attack was a blessing. It helped them to have the conversations and craft a plan her mum was happy with.
It raised a bigger, harder question for Michelle: dementia is a terminal, incurable condition, yet in Australia, it doesn’t currently qualify someone for voluntary assisted dying, because by the time it’s diagnosed and progressed, the person is no longer considered cognitively capable of making that choice for themselves. Unlike a cancer diagnosis, where a person retains the legal right to choose, right up until close to the end.
Which is exactly why these conversations need to happen early, while your loved one still has the capacity to say what they do and don’t want, and to put it in writing.
Tips
Michelle share tips. Important learnings she’s discovered along this journey so far.
* Get into the aged care system ASAP. Here in Australia it’s the My Aged Care system. The process involves getting assessed, then help is determined and able to be assigned. That assessment can take one to two years to receive.
* Get your legal ‘ducks in a row’. Michelle’s mum had a heart attack - that was the wake-up call to get things thought through and organised. Power of attorney, for both finances and health.
* Advance Care Directives. Michelle’s mum was very clear about her care and death wishes, and having that on paper was very helpful - for her care team and for Michelle as her mum’s advocate.
* When considering a residential care facility. Every single person Michelle has spoken to about this says the same thing - they wished they’d had the conversation, had pushed harder for options, a bit earlier. It feels cruel in the moment. It rarely is, in hindsight.
* Have the hard conversation with your parents and with your own kids. While everyone still has the capacity to talk about it. Yes, it’s uncomfortable. Do it anyway. Because it’s ultimately kind.
* Be your loved one’s advocate. Ask the questions. Follow up. Don’t assume the care team has already seen what you’ve seen - say something, kindly but persistently.
Resources Mentioned
* Be Light Care (also on Instagram) - Adria Thompson, a speech pathologist specialising in dementia, sharing practical guidance for everyday dementia situations.
* Travelers to Unimaginable Lands - Stories of Dementia, the Caregiver, and the Human Brain by Dasha Kiper - a book on the cognitive and emotional cost of caring for someone with dementia.
* Dementia Australia and Dementia Support Australia - support, guidance and practical safety advice for carers.
* My Aged Care - the government system for getting assessed and accessing home care or residential aged care.
A massive thank you to Michelle for her time, insights and wisdom. All she’s learned about loving and caring for someone with dementia. We are so very grateful Michelle. What you’re doing to support your mum is incredible and so appreciated. Thank you.
Michelle is here on Substack if you’d like to connect.
If this conversation has helped you and you think there’s someone in your life who’d appreciate it, then please share it on. That would be fabulous.
If you’d like to share your own dementia story for this series, please reach out. Your experience could be the warm hug someone needs today.
Thanks. Anita xx
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit midlifeunfiltered.substack.com
