I have had experience recently (over the last 4 or so years) of the aged care system in Australia. It came at no surprise to me today to learn that people suffer from PTSD trying to work their way through it. Here is a scenario for you to ponder – derived from real life experiences:
An elderly lady is living at home. She’s getting older and asks her son and his family to move in and take care of her. Being a cantankerous old love, she doesn’t want to move to a home and is keen to die there. She has dementia though, and her cognitive abilities are waning as time goes one. Her son and his partner agree that only through some sort of physical issue will she have to leave.
After a year or two of living with mum, the loyal son and daughter-in-law find themselves in the predicament where they cannot leave her alone any more. The dementia has worsened, but in her more lucid moments, our old love is still dead set on not leaving. The son manages to arrange for home assisted care after an inordinate amount of effort. At last, he and his wife are getting professional support for her in the form of assisted showers, price reduced incontinence aids and the like. While it takes a lot of burden off their shoulders, the sad fact is that the great dame of the home is declining at an ever increasing rate. Dementia is a life destroying condition, scratching memories to ragged remnants and pinching the mind’s capabilities down to a minimum.
One afternoon our revered lady falls and breaks her hip. While it’s a straightforward break, there is great concern among the family. She is rushed to hospital where they operate. While on the table, and despite a Do Not Resuscitate (NDR) order, her heart stops and they bring her back. It turns out that surgeons operate under a “no one dies on my table” mentality that we can all applaud. She comes out and into the ICU where the next week is touch and go as to how she will recover. As her condition improves and it’s time for her to go out into a ward, the son and his wife find out there are no beds for her. She spends the next month in the surgical ward of the hospital while a bed at an appropriate facility is sought after. Eventually one is located and she is moved into this care, with a slowly mending hip and bed sores from her time on the ward.
The general anaesthetic and the trauma of surgery have taken a toll, impacting this brilliant woman’s mind further and accelerating her memory damage. She struggles to recognise her family, her children apart from the son and daughter-in-law looking after her. It is a slow road to recovery and from her aged care hospital the son manages to secure respite care for her at the local aged care facility Mountain Peaks. At Mountain Peaks they’re able to look after her and the pension she receives is sufficient to cover her costs. But the nurses and doctors tell the son straight – she can’t come home. Home isn’t equipped to deal with someone requiring a walker and the home modifications needed so she can get up and down from the toilet or shower aren’t able to be done easily. Mountain Peaks offer a permanent room and now the son is staring down the barrel of the aged care system.
The government in Australia offsets some of these costs. But to get there you need to complete an asset assessment and a means test. The government then decides how much to subsidise your stay and the accommodation also decides how much to charge you based on this means test – how many assets you have, what they’re worth, how much cash there is and what constrictions are there on access to this money. For example, the family home belongs to our grand old dame, but her son and family live there. The government acknowledge that they can’t take it off her to sell. The son looks at his mother’s assets and realises that she has enough in savings to cover about 6 months of living there. The house is out of the picture and she has no real cash or savings any more. The older generation didn’t have superannuation like us youngsters and were responsible for their own retirement savings. So the son writes to the government requesting a financial hardship exemption from the payments needed to keep his mum in the home. The government can and does pay in full in these circumstances.
But things get hard now. The claim is denied and it turns out that the government thinks the home is worth $1 million and she has other assets that the son doesn’t know about and can’t access. What makes it harder again is that she no longer remembers what is tucked away, where it is or who is managing it. And with the payments for aged care for mum around $1500 / fortnight, her son is getting terribly stressed at how he will pay for it. What is he going to do? His mum can’t come home – they aren’t able to care for her and the home isn’t able to support someone with her mobility difficulties. What do they do?
While this account is somewhat fictionalised, I’ve based it on our experience and the experiences of others in the same situation. The document to fill in for the asset test is over 20 pages long and requires significant detail. The hardship form is half that length and twice as difficult to fill in. There are professionals out there doing this for a living and people are in desperate need. I can’t imagine what this must be like for an older person trying to organise it for their partner or for both of them – especially when an issue like dementia is involved.
I’ve written this as a way of getting it out of my head and on to paper, and attempt to capture how this situation can play out. We are still in the midst of it and working our way through the system. Our goal is that our loved one has the best care possible. So we throw ourselves against the system like the Spartans at Thermopylae for this outcome. Time will tell how successful we are….