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Personal feedback on aged care experiences

Alex Denham's personal experience with her father in aged care facilities struck a chord with many of our readers. There are 20 comments on the article, and it was our most popular article last week with about 5,000 views.

As many subscribers would have read the article before comments came in, we have reproduced three comments 'from the heart' below. It's not that everybody has poor aged care experiences, and obviously many people working in the sector care deeply about their clients. But these comments serve as a warning to assess the facility and the financial terms thoroughly to minimise problems later.

From Neil

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 exorbitant 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?

From Steve

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 don't 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.

From Greg

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.

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!

4 Comments
Ian Hamilton
November 22, 2017

Over the last 6 years I have had many dealings with these departments. My father entered in 2011 and stayed for 5 yrs being passing away this year, he got great care in the facility and felt secure with dementia. my mother then entered in 2015, ( new rules applied at this time ) i had the biggest and most stressful period of my planning life, getting her bond and means tested fees corrected over about nine yep 9 months.
in there case they were considered single pensioners due to separation by health. so when mum was lumped with a $500,000 farm ( not hers ) she lost all pension and tallied up a large bill in the system of care fees. she is now settled and going well, and yes every 6 months i notify the Centrelink department of her ACTUAL assets for fees, this is a total disaster, as all other contributors have written, plan early. its not easy.

Keith Suter
November 17, 2017

It is good to see this subject being aired in a financial newsletter.
Those of us with an aged care background are not surprised by these haunting accounts.
"Everyone wants to live a long time - but no one wants to get old".
Therefore we are in a state of denial about all aspects of aging.
As TS Eliot noted "humanity can only bear a little reality".

Wolfgang Bose
November 16, 2017

Reading this article I am ashamed that the Australian Government/Political Parties allow this to happen in my Country.
It is shameful that one has to seriously consider to leave Australia to be able to access affordable, caring and compassionate help and care.
A very concerned Australian Citizen

Ann
November 05, 2017

What awful stories, I am so glad that I am in self care and know that there is a hostel situation that is o.k later but hope I never get to the nursing home here, although it is better than the ones in the articles.

 

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