Lessons from my Dad, in and out of aged care

Aged care support workers play a crucial role in providing assistance and care to older individuals, contributing to their overall well-being and quality of life. https://www.mcsnsw.com.au/age-care/

Such a shame that NDIS is capped at age 65 each individual case should be individually assessed case by case age should not ve a factor. We are going through this with my 67yo father inlaw who now has dementia due to a brain injury he endured at work when he was 30years old and over the years it has deteriorated and now has dementia, even after many Dr's, Neurologist, Specialists appointments due to his deterioration it was never mentioned to to us to apply for NDIS until he drove one day ended up 2 hours from hom in dense bushland after being lost for 4 days and nearly died. But by then he was 65 and to OLD for NDIS so was entitled to level 4 agecare which was approx 8rs of care a week ?? its pathetic, now 67 and needs 24hr supervision due to him wandering and ended up on the M1 on a Saturday ?? so unfair, he has also been knocked back feom a number of homes we think due to his age and he is still so active.

My dad is currently in aged care. He has only been there a couple of weeks. It's brilliant staff wise, but naturally they can only do what they can with limited staff.

It's so sad seeing that the light has gone out in the other residents eyes. It's a glazed, lifeless look that haunts me every time I see it. And every time I visit dad I pass an old man in a wheelchair in his doorway who begs, "Please help me."

Although mum is 89 and lives at home, we are trying to see what in home care we can get for him if he comes home. He's on Level 4 with ACAT and previously had in home care but he needs more now and we need a different provider.

Even though he is 90.he wants his mobility back and does marching in his recliner while sitting, bless him. He was promised in house physios twice a week in aged care but they only saw him.when he arrived and he's not seen them since , again due to short staffing. We are trying to arrange private physio to see him which really should not be the case. He is so determined to walk short distances on his wheelie walker again and I'm sure with physio he could do this.

He has been sobbing in his chair and pleading to come home. I am now just as concerned about his mental.health as his physical health which has never been the case.

Asian culture has it right in my opinion. No matter what sacrifices need to be made family wise to assist surely we can pitch in, along with in home assistance. Something needs to change in our self focused culture where everything revolves around what's best for the individual. Were our parents thinking only of themselves when they provided for us and looked after us through many challenges and difficulties for 18 years and much longer in many cases.

Aged care homes are just too sad for people visiting, let alone residents. I wouldn't last two days.

Something is really wrong with our culture when we treat our wisest members like discarded rubbish.

Hi ? This is one of the most informative and enlightening article I have ever come across! I have printed it. (Lots of the comments have valuable insights as well) However I was unable to find a way of printing them? Any ideas?
Thank you Lois

Hi Lois, we have the facility to print to articles using a button at the top of each article, but not the comment.

It would be easy to copy and paste.

Yes I agree with the above comments. Had a mother in Nursing home .A nursing home is not a place to live it is a place to die but this highlights only half of the story.
Patients are doped up on psychotropic medication with dreadful side effects to keep them docile. In my experience the doctors know very little about nutrition or health.
They think they are gods and do not like being questioned. It is disease management with far too much medication and it does not work full stop.

Re item 6 - just wondering why this happened ?

Plus Rachel Lane (aged Care Guru's) often writes articles regarding the queue length for Home Care packages - currently 14 months and if after that time you are for example only, granted a Level 2 package but have deteriorated and require a higher level, the ACAT team will do another assessment and the 14 month cycle starts again for the uplift. Not unusual to wait 3 months for the ACAT team to visit.
The last stat I read just over 16,000 people had died waiting.

Seriously depressing all of this.

Notwithstanding the rEcent RC findings, if you need to go to fin planner go to one who is specialised in this area

Reiterating many of the other comments - an excellent article, thank you Alex.
And I'd like to add that for those who happen to have gone through WWII (or another war) and are DVA gold card holders or similar, as they deserve to be, most doctors and 'aged care providers' do not know, or lack transparency on the fact ,that whilst people remain at home, they have wonderful support particularly from allied health support services; occupational therapy, physio, speech therapy etc. Once they go into an aged care facility, the government allocates an amount to a facility and they are meant to be supplying all the required needs of the person. But not many professionals know the difference between the support they get at home, and the limits imposed on them in an 'aged care home'.
So you find they have, say 3 wheelchairs (often with a broken bit), amongst 160 people...or they provide 'a chair' but the chair is not the reclining sort that helps a person with Parkinsons out easily...or you have a battle getting physio or support services (previously provided) because the facility is meant to provide everything...and meals? Can you tell the difference between soft and softer, instead of something chewy vs soft...and do they give them a fork to help push the food on to their spoon rather than have the item fall on their lap and an 'oh, sorry, there isn't any more'...and then, yes, the long evenings...
And then there is the non requirement on staff/resident ratio! Forget getting someone to come when a bell is rung. You can easily wait 50 minutes. Most staff are doing their 100 hours work experience for their diploma.
And, like Alex, I'm talking about someone with the means to take their pick. No matter how fancy a place looks and feels, it's the culture that's important.
Staff need the time to talk to residents, and residents must feel hey can say things openly, when things aren't 'quite right', knowing they will be listened to and not victimised.
If we want it better than what we are putting our parents through, there needs to be further (urgent) discussion and changes.

The fall in interest rates is pushing the aged care sector towards a crisis point. Interest earnings have been for years covering the fact that their costs (wages mostly) have been rising faster than the government's payments per resident. But with interest rates now so low, their financial jaws are biting hard into their business models. (Not just talking about the for profits like BUPA here either.)
One part of fiscal policy that could assist right now would be an increase in the daily payments for aged care places and a promise to increase them in line with AWE.

I worked in nursing homes, in-home care and retirement villages for well over a decade.
I have some advice/opinions. One, it is always possible to stay in your own home provided you have enough money and are willing to modify the home. ( So many people don’t want to spend any money or move. )Two, it is a good idea to ‘try before you buy’ and spend some time in respite care in the place you are thinking of moving to. Three, the most important thing in a home is the staff. Four, most people leave it too late. When someone is in hospital for the third unplanned admission in a year it is past time and the hospital may well suggest a nursing home. Five, it may well be cheaper paying weekly than paying the bond, and renting out the house to cover this. A lot of people don’t last very long in a nursing home as they are very ill and frail when they go in. On the other hand, someone with dementia, may last years longer due to the superior care they receive to living by themselves.
Psychologically, people prefer to think that they could move back into their own home, rather than their lovely home of x years was sold so they ‘ put me in here’. Also, so many people move into retirement villages when they need a higher level of support. I would always suggest people only buy into somewhere that offers ageing in place.( Palliative care) Nothing worse than than having to move from independent living to supported accommodation to hostel accommodation and then having to go to die in hospital or move out to a nursing home because your retirement village can’t provide the level of care you need. I also wouldn’t buy into anywhere that is ‘going to ‘ build a nursing home section. I have seen too many people have to move out because the nursing home didn’t get built in time for them. This also burns through lots of money and explains why hospital beds are full of elderly people ( waiting to die or to move into nursing homes and having very long, drawn-out recoveries) The older you get, the harder it seems to make changes and adjust to change. In conclusion, hang on to your money because it gives you choices and don’t leave the difficult conversations in the too hard basket.

Thanks so much for your insight.

Good advice & well said!

Thanks Alex and the many other people who have kindly made the effort to respond to her article. The information provided is immensely useful but makes for sobering reading; I am dreading the day when I have to move my mother to care.

Thanks for the great article. I have been on the nursing home roundabout three times now. I will set out some of my advice/ things learned.

It is sad when someone older but in full mental capacity has to live in a nursing home, but I have seen people as young as in their 20s there because there was no where else for them to go.Hopefully the NDIS will now resolve that problem.

When a family member is getting to the point that they are struggling at home you really need to get your a@ into gear. People wait till the last minute and that is not only highly stressful but it results in less than ideal outcomes. You will regret not acting earlier. I have found that getting advice from a social worker from the local public hospital is a great resource. They will advise you on what is available in your local community or give you contacts. An early assessment from the ACAT team will give you a sobering understanding of what is in front of you. With mum and dad, they helped to organise home care, cleaning, meals on wheels, and safety modifications for the house.

It is essential to visit as many homes as you can and get a sense of the culture and what is the make up of residents (dementia / non dementia). You need to ask about dementia specific if you need that; and if they take wanderers. When my dad reached nursing home stage he had dementia and was a wanderer. After one unsuccessful home, we put him into a secure nursing home where again he managed to escape. No one knows how he got out, but they found him sitting in a gutter a few streets away. After that, they asked us to take him home because they could not care for him. In his last home they seat belted everyone into wheel chairs so that they could not get up and walk. If they don’t walk, they fall over, such was the philosophy of that place. Eventually the leg muscles atrophy and they cannot walk.

Finances are such an important thing to consider. I have seen articles which well reason the idea of gifting money to the kids so that you can qualify for the age pension or part thereof, but when I have seen the cost of aged care, my advice to my older family members is hold on to your money and try to put some at least into growth. I can’t argue with the numbers provided by planners; they make perfect sense; but they don’t take into account the peace of mind that comes from being independently financially secure in your most fragile years. See how you go getting your money back from your kids if you need it. My third family member who went into a nursing home went into a home that was not lavish but certainly better than my parents had. His refundable accomodation deposit was $600,000. He could not afford that, so we took the option of paying $100,000 and paying the “interest” on the balance. His wife was still in the family home and would not have been able to cope with the stress of a mortgage, so we took their investments and put the equivalent of two years of nursing home fees into secure investments (such as term deposits) and the balance in growth stocks. In their case the aged pension increased when he went into the home, but still the pension and dividend income and interest did not fully cover costs of living and nursing home fees. My advice to anyone getting older is to not give away money on the assumption you will not need it, unless you are really wealthy and then the age pension is irrelevant anyway.

Like Neil, I cannot understand how the elderly deal with Centrelink or Dept Human Services without help. It is ridiculous beyond words. For example when all attempts to update assets online fail, you go to the website for a phone number, but it is not plainly listed (or it wasn’t year ago when I last used it). My experience was that when you find a number that looks like it might help, it leads to a dead end recorded message. It is by far the worst, but most large organisations are difficult to deal with if you are ringing on behalf of a family member. An enduring power of attorney appointing a trusted attorney is essential.

My last piece of advice is to visit your family when you have them admitted and take the time to say something nice to the other residents. It is devastating how many older people are just abandoned and forgotten. I sat with my dad in the rec room one day. A guy nearby also tied securely to his chair leaned out to me as I was about to leave. He said “Is he your father?” I said “yes”. He said with a broken voice as he shook my arm “Sons are very important”. He had an addressed envelope on his lap. He said “I have just written a letter to my son.” I asked if he would like me to mail it but he asked me to give it to the nurse. I said “Does you son ever visit?” “Oh yes' he said "… he just lives a few streets away so he visits all the time.” I dropped the letter to the duty nurse and I asked if the guy ever gets visitors. She looked at him scantly and said “I had never seen anyone visit him.” A very sad thing.

:( so sad- the last paragraph has brought me to tears.... this blog has been the truest and real thing and close to my heart that I have read in a very long time. Your response is beautiful. Every time I visit my dad, I always make time to help other residents and chat with them. If I could visit daily I would. I am about to start the process to take my father out of care to come live with us now, and just preparing all plans beforehand. I would love to speak with the author so much. .. much love - D

But in 6. The Means Tested Care fee is based on the actual daily cost of care as determined by the Government based on the ACAT assessment.
It's actually based upon the Aged care Funding Instrument - an internal assessment by staff on the care needs

Thanks for your article Alex, it has given me some much needed moral support.

As a retired, tertiary trained professional (Mathematics degree) I was handed the job of organizing our 91 year-old father's move into Residential Aged Care. In full seriousness, I am not sure who has been most traumatized by the move. I was well acquainted with the financial complexities, but I was quite unprepared for what was to follow.

I have found dealing with the Department of Human Services the most demoralizing experience imaginable - whilst the individuals I've spoken to have all been pleasant and reasonable, their systems, forms and form letters are appalling. (My experience has been exacerbated by dad becoming eligible for the Aged Pension and the joys of dealing with Centrelink at the same time,)

Within 18 months there have been numerous fee revisions and backdating, making it very difficult to plan. People should be aware that fees are reviewed every 3 months, and are in my experience likely to have major errors.

Twice in that time, my father's moderate assets have been miscalculated by several $100,000's, which to any competent person would have been immediately apparent. The first case double-counted the Accommodation Bond and the second occurred when we sold his home- the modest proceeds of the sale were counted (naturally) but the $160,000 cap for home ownership was retained, despite his clear Centrelink status as an non-homeowner.

Significantly, when I immediately informed the Dept of these errors, I was told I would have to wait until the next review, when these acknowledged errors would be rectified! I had to pay exhorbitant and incorrect fees in the mean time. In one case it took over five months of hassling before a correct refund was made.

What happens to elderly people who don't have a numerate advocate?

Great article, would like to note my observation last week when taking my elderly mother out and about, there were just so many people my age leading, guiding, helping elderly parents around

Thanks, Alex,

I am impressed that you are willing to acknowledge the challenges that you faced, even for an expert. My mother's experience of an independent unit in a retirement village has been very good and my wife's parents' experience of higher care has also been good. The issue that strikes me, however, is the financial complexity. I am financially literate and I was overwhelmed by the confusing interaction of State and Federal regulations and the conflicting interests of the ATO, Centrelink and Health Dept. How do "average" people navigate all of these requirements? And how do people without the financial assets manage?

Surely there must be a better way?

Hi Martin, just saw your comment. I think you have raised some very interesting points regarding the financial complexities. Previously I have personally managed and also seen clients deal with very difficult and complex situations regarding managing finances. That is why it is important for them to see their financial planner who can guide them through this difficult time and help managing the financial well-being of the person going into care and their family. I previously didn't think this was important until I had to deal with it - now I am starting conversations with all my clients and it has done nothing but add value to my advice process and my value proposition. I recommend looking at aged care courses out there that can build your confidence too - soon you will be able to help "average" people navigate their requirements and ensure their financial stability too when looking at aged care options.

Yes. Good financial planners earn their keep helping people with such complexities, rather than picking stocks and trying to guess whether markets are overvalued or not.

Robert alludes indirectly to a psychological issue we face as we grow older. Familiar surroundings, family and peers cultivated over time cater to an emotional need that objectively better conditions often fail to induce. I have known old acquaintances who would routinely put up with mosquito bites (as they have always done) if they would not have to move.

Just as we prepare youngsters for work (culture, attitude, social interaction), there is a need to prepare ourselves for declining faculties, changing personal circumstances (loss of spouse, relationship issues compounded by potential inheritance differences) and the eventual end in an empathetic way. In the past religion has served as a salve, but its influence has declined.

Should not 'advanced' communities such as Australia pioneer the movement? There may well be action here that I do not know of.

Being at home doesn't have to mean the home you have always lived in. A retirement village is an intermediate option, you are still independent, but can have as much social contact with other residents as you want, and don't have to worry about home maintenance. Or climbing steps. And my village is in the same suburb as my previous home, so I have the best of both worlds, still in my original community.

Hi Robert, that’s terrific! Unfortunately Dad assessed as needing high care makes him currently ineligible to buy into a retirement village. Certainly his plan is to get his legs working again to get more independent then he hopes to look into that option. It would suit him perfectly being around peers again.

Hi hope your dad’s mobility improves. Just b careful of extra cost like mantainence cost that can blow out.

In commenting on difficult problems, one has to adopt the average approach, but as Alex and others have pointed out, no one is just average. Extrapolation fails. Confucian, Christian or secular humanitarian, the current regime that mandates finanacial responsibility for offsprings but makes parents communal responsibility does need review (Singapore has done it).

Money alone will not cure the problem, being one ingredient. I have found more than body comforts, company and being cared for counts.

To those struggling with aged care, and those like me approaching it (most hope to, given the binary alternative ...) best wishes and shared commiseration.

My next door neighbor from years ago lived in a nursing home for a year, I would visit him once in a while, he hated it, the regulation, the feeling of being alone. Not locked in the room but virtually locked in with mobility issues. When I took him out for days he was so glad.

He worked around the world a bit in his time and decided to take off and live in Thailand, where age was revered years ago when I worked there. He had worked in Thailand for a number of years on projects.

He now lives in a one roomed flat in Bangkok, eating all that lovely street food as he is off the tourist tracks. Fairly close to the sky train to get around.

The monks from the local monastery got him a dog for company, the school children talk to him to practice the English they are learning at school. He says he will never return to Australia and loves his life there.

Ken Wyatt is doing some work on this subject I think, probably something will need to be done as one day it will happen to all of us.


There is an old American guy lives in the same block of flats,he hires a middle aged Thai woman to take him out as he is wheelchair bound.Down to the pub twice a week,see some live music.Her children look out for him a bit. He swears that western governments should look into this as a lifestyle choice rather than vegetate in a nursing home.

It doesn't have to be a Confucian concept. The early Christians were urged in the scriptures to care for "widows and orphans", ie the elderly and the young who in the society of the times were the most vulnerable. This is why so many of the aged care facilities that we have these days were started by Christians. Uniting is the largest provider and most of its facilities originally were local Methodist (now Uniting Church) congregations responding to a need.

I've forwarded this article to my colleagues at Uniting (including the Board Chair and the Executive Director) because I know that they aspire to deliver a better standard and have been developing new facilities that address at least some of the concerns expressed here and in the comments. Always room to improve, but just as Alex hasn't written off all providers in the article, I urge readers not to either.

I might add that my own personal experiences with an in-law and now my own parents has fortunately been more positive and less troublesome. Among them they've covered the spectrum, from independent living through hostel to nursing home. It hasn't all been perfect and we were glad to get my late father-in-law out of one place, but we didn't get any negative financial surprises. Sounds like we got lucky, but we were well advised along the way. Don't despair Alex, your input to your clients is, I'm sure, of great value to their decision-making.

Wish Alex's dad a peaceful and relaxed time in his home, closer to familiar company and surroundings. The concern and stress the near and dear ones have to navigate are real and reflect that twilight years present irreducible challenges for the person as well as close ones.

If a skilled person like Alex has to review the events for overlooked lessons, most of us from other occupations have little hope.

Without in any way diminishing the challenges, I must pose a difficult question, though: Our system rightly expects parents to look after children when they cannot fend for themselves, and if one of the parents don't, their financial resources are suborned by the state when the other parent or state has to step in. Why would this not apply when the children become adults when parents are in need of help, company and the human touch which no home can ever match?

The western world has adopted several eastern concepts: algebra, yoga, all the major religions, acupuncture... Is it not time we infuse a modicum of oriental family values based on Confucian responsibility towards parents, as much as we axiomatically demand towards children? Why is this asymmetry of outsourcing the reciprocal offspring obligation to the taxpayer (groaning under age pension and ageing tsunami) acceptable?

This is not intended to offend. If it provokes (debate, not acrimony), the purpose is served.

Thanks for the comment Ramani, and for your well wishes to my darling Dad. Dad certainly has the option and invitation to move in with my family, but he chooses not to. I live outside of Sydney, on a rural property in cold climate. He would be very isolated during the day while I am at work, away from his beloved Probus, and he hates the cold. My sisters (who also do not live in Sydney) and I spend a lot of time travelling to Sydney to care for him and be with him, juggling young families and work obligations - the classic sandwich generation! I know many people my age caring for ageing parents while their own families take backseat. I think you'll find that the outsourcing of offspring obligation is less prevalent than you imagine.

Ramani, while I completely agree with you, it hasn't worked out so well for our family. I have looked after my 99 year old mother in her own home (including buying a newer more suitable home, renovating it, clearing out her 55 years of hoarding, then selling it, obtaining id documents for her). She isn't on a pension and neither am I so I also manage her investments, provide all her meals, do her washing, cleaning, garden/house maintenance, mow lawns etc. She refuses to wash, wear clean clothes or generally behave in a socially acceptable manner. My hope was that I would knock myself out for her so that she could enjoy her last few years of independence then she would agree to more support services when she was no longer capable of looking after herself. Sadly, that hasn't happened and I've reached the point where my own health is failing and my main concern is dying suddenly and leaving this horror to my daughter. There don't seem to be any answers. My mother screams at the thought of any type of home care whatsoever and refuses to even discuss assisted living options. She has absolutely no concern about the effects her behaviour has on me or the rest of the family. I'm an only child who invested well, retired from a high pressure job at 53 thinking that I could spend some time pursuing my own interests but I'm now close to 70 and find myself totally isolated and unable to even go on a short holiday with my husband. My advice to anyone considering looking after a parent is to think about it very carefully because they may well trade in their life for yours.
Thanks to everyone who contributed to this topic ~ it's certainly interesting reading. If only I could persuade my mother to take advantage of the many services available!

Excellent article Alex, well done.

We have experienced similar insights with clients around the lack of mental stimulation, and as you have described, being surrounded by those that need to be in the nursing home rather than a desire has a detrimental effect on their happiness.

We subsequently have spent a lot more time with new retirees educating and providing them with comprehensive checklists on Universal Design for when choosing which next property to buy at the time of moving homes - or particularly when a health event occurs and modifications are required.

The vast majority of Australians want to Age-In-Place when elderly but even the newly designed homes of today are built for a society full of Peter Pan's that never age.

Surely an opportunity for savvy builders and architects to grab a slice of the burgeoning ageing population needs of the future.

Welcome to the real world of aged care! Your experience is similar to many that I have been exposed to and also via bitter personal experience with my mother-in-law. Although in her case because she had a fall, there was the hospital battle to deal with which almost killed my wife who was there every day for almost 6 months.
If you are elderly, in a hospital, you are invisible! The only person who takes an interest in you is the Bed Manager, who wants to know when you are leaving so they can have the bed for the next patient. We have to do better for for our elderly! I understand costs, but the ACAT assessments should be almost instantaneous, rather than months to organise. I believe that there is a limitation of resources in the ACAT area as a "brake" on the production line into facilities of whatever type. In many cases the ACAT assessment bears no relationship to the need of the patient, but simply matched to the available resources. If I am skeptical, I have good reason to be. But this article is a timely reminder of what it is like to be "up close and personal" to a situation that is likely to affect us all in the long term!

Great article. I only recently did an aged care training course and its become so important in having the difficult conversations not only in personal life but in the advice space as well

Thanks for the personal perspective ... I've never heard a good story about a nursing home.