This is a brief summary of some aspects of my experiences dealing with my mother’s dementia and dementia facilities in Sydney over the past three years. Every case is different of course, so these are just my random anecdotal comments that may be of interest to others facing the prospect of parent(s) or family member(s) with, or developing, dementia.
First, some background. My mother was born in 1928 in remote country NSW. Married for 56 years to my father, who died in 2012 at age 80. Four kids. One died in 2013. My two other siblings live in remote country NSW and country SA. My mother had outlived her siblings and had no other relatives in or near Sydney where she lived, so I was the only family in Sydney.
1. Cognitive decline can be very quick
After my dad died in 2012, my mother lived alone in Sydney. The location was perfect – a modern, secure high-rise unit in a complex that included a full range of supermarkets, shops, medical services, etc. She kept herself busy writing. She was mentally sharp enough to obtain her PhD from UNSW at age 90 in 2018 and was certified competent to execute legal documents at age 94.
However, she went downhill quite rapidly. Formally diagnosed with vascular dementia at age 95. Into the first ‘permanent’ dementia facility in March 2023 after some short-term respite stays in a few places. Died in the fourth ‘permanent’ facility in June 2025 a few days after a massive stroke a week after turning 97. (There are various paths to dementia. Vascular dementia is one path, involving progressive damage to brain cells caused by a series of mini strokes over many years. In the end, it was a major stroke that caused the final damage.)
The decision to ‘go in’
In the years before ‘going in’ to permanent care, there were many signs of cognitive decline. She, and we, put it down to forgetfulness at the time but, in hindsight, we probably should have recognised it as something more. She refused to accept this and obtained diagnoses from GPs and geriatricians that she had full mental capacity.
Her forgetfulness started to get more serious over time. In the months leading up to the final decision to go into permanent care, the forgetfulness got much more serious – like forgetting to eat regular meals (which caused significant loss of weight and strength), forgetting what do to when she got into the lift she had used every day for 20 years, getting lost on the streets close to home, writing blank cheques when paying bills, forgetting how to use email, laptop, phone.
She was always a very independently minded person who was extremely reluctant to admit that she could no longer live alone safely, even with her extensive use of in-home help services almost daily. After much debate with the family, she finally but reluctantly agreed she needed full-time care in a permanent place. She needed 24/7 supervision as she had several episodes of falling over and breaking bones, including in the middle of the night in her unit.
However, she hated the idea of not being able to just walk out the door and go home whenever she felt like it. During the first year in aged care places, her principal obsession was plotting and planning her escape. She did actually manage to escape a few times – for example though fire escapes and loading docks, and was found wandering the streets, lost.
2. It took a few facilities to eventually find the right fit
I looked at more than a dozen different aged care homes. Each one is different. The trick is to find the best fit for each person’s particular condition and needs. This can take a fair bit of trial and error. There may be some places that are ideal, but they invariably have long wait lists to get in.
Different facilities cater to different types of conditions. In my mother’s case it was advanced dementia with physical aggression issues. We discovered that normal aged care homes are not equipped for this, and even normal dementia facilities are not equipped for this. Following short-term respite stays in a few places, my mother had stints in three different ‘permanent’ facilities before finding the right place, the fourth.
Where did her physical aggression come from? My mother was a quiet bookworm all her life, but she was also very forthright, argumentative, and stubborn. Before dementia set in, she would express this verbally, in the form of endless arguments, and in writing – sending off complaint letters left, right and centre about all sorts of things. Problem is, once she started losing the ability to express herself verbally and in writing, her forthright, argumentative, stubborn nature turned into lashing out physically – slapping, hitting, scratching, biting, punching, throwing things, pushing, shoving. She didn’t know she was doing it, and/or would forget it immediately.
Evicted!
She was evicted from the first three places (firmly asked/told to leave). I am not exaggerating. One of them even had to get the police to remove her – literally. Paramedics do an amazing job, but their procedures require that if a patient does certain things, they must call the police for support. Getting my mother out of Beresford/Drayton Rose Bay required two paramedics and two police officers!
The other evictions were less dramatic but no less traumatic. In one case I got a phone call while I was overseas (and they knew I was overseas because I told them beforehand and begged them to keep her until I returned the following week). Their message was - ‘Come and pick her up – NOW. Not tomorrow or next week. Now!’
The more common form of eviction is eviction by stealth. When there is a problem – like a fall injury or uncontrollable aggression – they send them to an emergency department (ED) at the nearest available hospital. Then, while they are in ED, the aged care place calls to say, “I’m sorry, but we’re not taking her back!” So she is stuck in ED. After a few days in ED, the hospitals move them to the Acute Observation ward, or Palliative care until I can find a new place.
The four ‘permanent’ places (all in Sydney) we went through were -
- Lulworth House, Potts Point
- Beresford / Drayton, Rose Bay
- Sacred Heart, Darlinghurst
- Lilian Wells, North Parramatta
These are fine institutions from my experiences with them. But each is different and caters to different types of needs. You don’t really know that until you get inside.
There is a right facility for every need
The fourth place turned out to be a perfect fit. Around 70 patients, all with similar conditions – advanced dementia with various types of aggression issues. Ages ranged from 60s to 90s. My mother, at 96, was not the oldest when she arrived, but soon became the oldest.
Most aged care homes are all boring beige and white, but this one was very different. It was a cross between a ‘madhouse’ and a kindergarten. Full of bright colours, big pictures of birds, fish, flowers, etc. Every day was filled with group activities like music, colouring-in, painting, balloon games, dancing, cooking, foot massages, fingernail painting, sing-a-longs, – just like in a kindergarten. There were also petting zoo visits, and bus trips to local parks. (The ‘madhouse’ part I will get to below under ‘Restraints’).
These organised group activities filled every day from first thing in the morning to after dinner. Wherever possible, all residents are involved in all activities – as they benefit from social interaction, physical activity, and a sense of involvement and achievement, even if they didn’t remember it minutes later.
I found that a good test is to walk around the corridors and count how many residents are alone in their rooms. In many places I visited, most patients were sitting or lying in their rooms alone. In the fourth place it was very few if any, which is very different to all the other places she was in, and others I investigated in my ongoing quest for the next place in case she was evicted again.
3. Memory and reversion to early childhood
In the case of my mother and other dementia patients I saw, memory loss goes progressively right back to early childhood. My mother started out forgetting recent day-to-day stuff (like whether she had lunch that day, or coffee five minutes ago), then she forgot the past decade, then the past 30 years, then the past 50 or so years.
In the last six months or so, she had no idea who I was, and she could not recognise anybody in family photos, but she could talk about her dog she had when she was nine, and her friends at school, her first job in the local hardware store when she was fourteen, and so on. It would be very difficult to get her to concentrate for any more than a minute or so, but it was clear there were still some very early memories in there somewhere.
A large proportion of the patients were immigrants who came out to Australia in the decades following the Second World War. They had spoken English fluently as a second language while living in Australia for many decades, but with dementia they totally forgot English and reverted to the language of their childhood. This made it very difficult for staff as they had to deal with patients yelling in dozens of different languages.
Many of the patients were constantly clinging to one of a large selection of fluffy toys and dolls, much like they probably did when they were toddlers themselves. They were like two-year-olds again – in diapers and being hand fed, washed, clothed, toileted, and changed by others.
4. Some surprising aspects of cognitive decline
In my many visits I observed that the pace and pattern of mental decline is different for every person. Some would not say a word for hours (or even days according to the staff), but then suddenly start up a long but one-sided conversation with nobody about detailed stuff from their workplace. Others would suddenly scream out all sorts of abusive things to other people and often to nobody – often in their childhood language.
One gentle gent called Gary would happily chat with me about what he remembered about his life but then would suddenly become aggressive and start physically attacking another resident.
In my mother’s case, during the last 12-18 months of her life (which was only a couple of years after being diagnosed with dementia), she was no longer capable of conversations – it became a series of seemingly random sentences blurted out between long periods of blank stares.
It was not complete gibberish (ie not just random words that made no sense). They were actually well constructed sentences that she would articulate as if she was having a rational conversation. Then it would be back to a vacant stare.
She had been a writer since the 1970s, and it was clear that her brain had still remembered hundreds or even thousands of words, and her brain had also retained the ability to put together a proper sentence using words. Good sentences with an object, subject, verbs, nouns, prepositions, etc. The problem was that she had lost the ability to know which words to use in a sentence to express what she was trying to say.
While on the surface it appeared she didn’t know who she was or where she was, and didn’t recognise me or anyone in family photos, it was clear that something was still going on in there.
For example, on visits, I might be sitting with her for half an hour or so without her recognising me or sometimes not even realising I was there – just blank stares into space, unresponsive to my questions or chatter. But then she would suddenly blurt out to a staff member nearby - ‘Do you know you look just like my son Ashley!’ So my being there was actually getting through to her, but it came out in a strange sentence. There was something going on in there after all!
Here are some actual examples of random-sounding sentences she blurted out suddenly out of the blue -
- ‘I do wish they would hurry up and finish building that bathroom!’ – that probably meant she wanted to go to the bathroom, so the staff took her to the bathroom.
- ‘There wasn’t any bacon at the beach today!’ – she was probably hungry.
- ‘Why don’t you just put the oranges over there?’ – she was thirsty.
- ‘Thank heavens you found me. I was stuck in a tunnel underground for months and didn’t know where I was!’ - That was an early one in the first facility, and I figured it was her way of saying she was lost and was trying to get out, feeling alone and trapped. All very true, and completely understandable why she expressed it in that way.
- ‘Do you know, we really should spend more time in Paris!’ – I still don’t know what that one was about, but it may have been about my dad. I will never know.
These were just some of the seemingly random sentences that I could figure out (I think) what she was trying to say, more or less. Most were completely beyond me, but I can’t help thinking that there was some clue in them that she was genuinely trying to communicate using the mental tools she had left.
Whenever I asked her to repeat what she said, or ask her what she meant, she had forgotten it straight away, and she would go back to blank stares again. Nothing. Just blank stares.
In the last two or three months, there were fewer and fewer of these mysterious random sentences, and it progressively became just blank stares. It was a rapid decline.
5. Life inside takes some getting used to
The environment inside the dementia facilities I experienced takes a bit of getting used to. Pretty much throughout every day, there is always one or more patients yelling or screaming (often in foreign languages), or pushing or shoving another patient or a staff member, or throwing their food or drink, or continually knocking a chair or table against a wall or window. Constant unnerving din.
When the patients are calm, they would usually sit around large tables and, from a distance, it would look like they were talking to each other, but they were actually just muttering things to themselves or yelling random things at nobody. Even when they were doing an activity like colouring-in, they weren’t actually talking to anyone. Although they were physically ‘together’, there was very little interaction between them. I think they were aware of the existence of other people, because they would randomly steal each other’s food or drinks or paint brushes, but there was very little social interaction between most residents. It was not unusual to see two residents sitting at a table intently chatting away in completely different languages.
Every time I was there, there would always be someone who would come up to me and pinch me or push me or punch me or grab my arm or ram me with their walker. The staff would always be on the lookout and race over to divert their attention.
Like the other residents, my mother had mostly ‘good days’ but occasionally had a ‘bad day’. For example, one day she decided the building was on fire, so she tried to push and shove other residents through doors and windows while yelling ‘fire!’ On other days she would wander into other people’s rooms (she didn’t know which room was hers) and use her walker as a battering ram against other residents and staff.
The general commotion would usually get worse in the afternoons, but it was mostly quieter in the evenings. But even then, there would often be some eerie howling or wailing.
There is no quality-of-life dignity in this. Bodily functions, not just mental functions, regress back to very early childhood. They end up not knowing who they are or where they are, back in diapers, unable to feed, dress, toilet or bathe themselves, and unable to communicate. Completely and utterly at the mercy of staff at all times.
No concept of personal possessions
Initially we put things in her room like family pictures, to make her feel more at home and familiar. But after only a few months, she didn’t recognise anything at all. Not even me, nor my sister on facetime phone calls. Nothing. Just blank stares and shuffling off aimlessly.
Personal items turned out to be not a good idea, even family pictures. Patients would wander in and take them as theirs, and/or use them as weapons or projectiles. Likewise, my mother would be clinging to a handbag I knew wasn’t hers, or using a walker that I knew wasn’t hers. She just wandered into other people’s rooms, took things and thought they were hers. Then she would forget all about it minutes later.
There are no personal possessions. Not even their own clothes, even though everything was labelled meticulously. The staff would wash all their clothes regularly (dementia patients can make a real mess of themselves when eating) and then put them back neatly in the right wardrobes. But the patients, including my mother, would wander around aimlessly into other people’s rooms and take random things from other people’s wardrobes.
There would often be verbal and physical fights over possessions that did not actually belong to either person.
6. Medications and restraints
Every patient has different needs, and the staff do the best they can. But often the staff are only able to give proper care with the aid of medications. I found that the doctors and nurses always involved family in discussions about what types of medications were needed in what circumstances.
This meant I got to learn a fair bit about things like risperidone, lorazepam, haloperidol, targin, and others I don’t even remember now. Each is different - different ways of administering, differences in how fast they kick in, how long they last, side effects, etc.
As my mother was also on a host of other medications for other conditions as well, the trick is to get to know how all these things interact with each other, and what combination works best in what situations.
The doctor would prescribe the medications, but the nursing staff exercise a fair bit of discretion over how, what, how much, and when to use them. I found the nursing staff were happy and keen to discuss this with family, in coming up with different regular combinations to use at different times, and what was on ‘PRN’ (as the situation arises).
Restraint consents
There was a rather scary form I was asked to sign – a Restraint Consent form. This is a consent that allows staff to use several different types of restraints (or ‘restrictive practices’) on the patient, when necessary, at their discretion. The types of restraints include:
- Chemical – drugs to control behaviour
- Mechanical – using things like handcuffs, belts, harnesses
- Physical – being held down by staff, eg to prevent harm or allow medication
- Environmental – limiting access to areas
- Isolation – eg in secure area or room.
This is obviously quite confronting stuff the first time you see it, and the family would only sign the consent form if they have utmost trust in the staff.
I got to know the surrounding hospitals quite well
My mother was always falling over and breaking bones – mostly arms, elbows, hand, shoulders, but also eye socket, hip, femur, and pelvis – twice. She had a walker, but she didn’t actually understand what to do with it, so she was constantly wandering off from the walker and falling down. No matter how many staff were on duty, it is impossible to be one-on-one with every patient 24/7. There are motion sensors in the beds, so they can rush to the room when someone is on the move, but often it is too late to prevent a fall.
So I got to know my way around several hospitals – mainly St Vincents Darlinghurst, Sydney Hospital (Macquarie St), Westmead, Ryde, and Auburn Hospitals.
7. Staff were amazing
In the four permanent facilities over the period of a little over two years, plus short-term respite stays in other places prior to that, I never witnessed any staff abusing or mistreating patients. In fact, I found the opposite. I was always amazed at how the staff knew how to soothe and placate each individual patient – especially in the fourth place, where she spent the most time.
On the other hand, I have a niece who has worked in several care facilities over the past two decades, and she says she has been horrified by what she has seen in some other places she has worked in. I recall seeing and reading about shocking incidents highlighted in the Royal Commission into aged care a few years ago, but I saw none of that in the facilities I visited.
I volunteered regularly in the fourth place (still do), so I have seen a lot more of what goes on than regular visitors. Maybe we were just lucky. Who knows.
Staff at the fourth place were truly amazing. It seems all staff at all levels and in all roles knew what triggered every patient, and how to calm them down or divert their attention.
One example of staff involvement was mealtimes. It’s all hands on deck – including management and office staff – making sure every resident is calmed down, sitting down and gets the right meal for their particular allergies – and at the right chewing grade (from regular through to ‘puree’), and their right grade of drink (from regular liquid through to grade 4 thickness, which is almost jelly-like), and then they spoon feed all who need it. Then there is the massive clean-up after each meal. Mealtimes tend to get very messy!
Another example is when my sister visited (she is a school teacher in country NSW so could only visit in school holidays), the staff would greet her by name from across the room, even though she hadn’t been there for three months and she walked in with no notice.
On the day my mother died (in the facility), several staff members, including kitchen staff and office staff came over and gave me a hug. They all knew every patient and every regular family visitor by face and by name, and I could see they genuinely cared for the patients and families.
Walk the corridors
A good test is to walk the corridors, including in the facilities you are checking out for the future. Observe all staff – including cleaners, kitchen staff, support staff, office staff, etc. Are they smiling? Singing to themselves? Chatting to residents? Greeting you? How are they talking to residents? Scolding or soothing? Are they singing lullabies to calm the residents, or are they busy on their phones? Do they pitch in and help out other staff when they need it, or do they stick to their assigned jobs?
On some of my visits, when my mother was busy involved in a group activity, I would sometimes stand for half an hour or so in her room, where I could look out the window across the courtyard and observe the main activities area, dining room and other common rooms where staff were going about their work – just to see what was going on without anyone knowing I was watching. I never saw anything unusual or concerning, so I did not get any sense that staff ‘behaved’ any differently when they knew visitors were watching.
8. Have all critical docs ready
I found out the hard way that it helps greatly if you have all of the important documents ready in advance – eg the Will, Enduring Power of Attorney, Enduring Guardianship, Advance Care Directive, and many other useful docs.
In my mother’s case, she always insisted she was going to live to 120, so she refused to even discuss things like wills, powers of attorney or guardianships, and was horrified by the thought of an ‘advance care directive’. (For example - Mother: “Well I can make that decision when the time comes.” Lawyer: “But when that time comes, you might not be conscious or mentally able to make decisions for yourself.” Mother: “But I will still be in control, so I’ll make the decision when the time comes.”)
With dementia setting in, there is a point in time when the lawyer will put his or her foot down and tell the client they are no longer mentally capable of executing legal documents. They can do this with or without a formal medical dementia diagnosis. So, in our case, we were stuck with old documents with different parties named, and filing cabinets full of various versions and unsigned drafts. Adds enormously to complexity and stress.
‘Advance Care Directives’ come in various forms. The standard ACD is relatively short with just a few questions. But when you get into the dementia world, there are other much more detailed forms with more questions about different aspects of conditions that may be encountered, and what the patient’s wishes are at each level. Some of the questions can be confronting and disturbing, and can be difficult to discuss. The more detail the better, as it assists doctors and family if and when the time comes to make decisions.
Other docs
In addition, it is very useful to always have comprehensive lists of allergies, medications, past conditions and operations, and contact details of doctors, specialists, guardians, next of kin. For me, it soon became essential to always carry copies of these with me at all times because somehow they always manage to go missing somewhere along the way – eg lost in transit (eg to hospital, or between wards in hospitals).
As my mother always said she would live to 120, she never documented things like whom to contact when she died, funeral preferences, locations of documents, passwords, keys, etc.
As a result of that lesson, I have now updated my own end of life docs (Enduring Guardianship, Enduring Power of Attorney, Advance Care Directive, Will, Binding Death Nomination, pre-signed instruction to SMSF trustees to shift money out of super to minimise the 17% death tax, EPOA as shareholder of corporate trustee of the SMSF to elect a new director, Substitute Director Nomination for the corporate SMSF trustee, etc), plus funeral preferences, list of people to contact, etc.
I even drafted my own death certificate (I learned the hard way that it is easy to make mistakes when asked a bunch of detailed questions under sleep-deprived pressure in the funeral home, and it took another six weeks to get an amended Death Certificate issued, which delayed Probate even further).
Morbid? Maybe. But practical.
9. Nursing home costs were less than I had expected
Bottom line is that costs of permanent aged/dementia care homes were less than I had expected. Total costs turned out to be around $120,000-150,000 per year out of pocket (ie net of insurance). This was around half of what it would have cost for full-time 24/7 professional care at home, which was the only other practical option.
I have reported on my experience with costs (including RADs, DAPs and all the rest) in a separate story.
10. What’s the best way to go?
My grand adventure on this planet will end one way or another. I have seen, close-hand, three of the main ways to go:
- Physically pain-free, but mentally completely gone and utterly devoid of control or dignity (advanced dementia), like my mother.
- Mentally sharp but physically wrecked (riddled with cancers and in excruciating pain, just begging to go), like my father.
- Or suddenly out of the blue (in a plane crash) like my brother.
I don’t know if there is a ‘best’ way to go. I probably won’t have a choice in how or when, but it certainly does focus the mind on how to make the best use of my limited time left on the planet.
Ashley Owen, CFA is Founder and Principal of OwenAnalytics. Ashley is a well-known Australian market commentator with over 40 years’ experience. This article is for general information purposes only and does not consider the circumstances of any individual. You can subscribe to OwenAnalytics Newsletter here.