Grief and the passing of a loved one

Last year in October, I climbed onto the skinny little hospital bed next to my father so that I could get close enough to give him a cuddle. I lay there beside him while he struggled for each breath and talked to him about all the beautiful memories I had of us. He couldn’t respond; he was unconscious, and I’m sure most medical professionals would say that he couldn’t hear me, that he wasn’t aware of what I was saying. It doesn’t really matter if he did or not, it felt like the right thing to do and I was not going to let the last opportunity I would ever have to cuddle my Dad slip by without taking it.

We were pretty lucky in some ways because when we realised he’d developed pneumonia, the doctor said he had to go to hospital and he was taken by ambulance to the new Royal Adelaide Hospital. As it was in the very early days of the new hospital complex, the wing Dad was admitted to was very well staffed and it was the first time I’d ever been in a public hospital with so many nursing staff. Given that I work for the nurses union, I of course asked them what the ratios were in that wing. They told me that they had ratios of 3:1 registered nurses, three per patient. I asked them if that was legislated, and they said no. South Australia doesn’t have legislated nurse-to-patient ratios, but all of the staff in that wing were union members. Together they had fought for that level of staffing, and they had won.

Nothing could possibly dull the blow of losing my Dad. Nothing. But not having to worry about whether he was getting the care he needed (because we were able to witness it), at least meant there was one less thing to consider.

Dad had been living in an aged care facility for three and a half years prior to being admitted to hospital for the last time. Living close to mum was one of the key criteria when we looked for a place, though choices were scant as he ended up moving in a lot sooner than any of us had expected. In a lot of ways, Dad was one of the luckier residents as he had very regular visitors. Mum went and spent time with him almost every day and my siblings and I all tried to visit at least once a week. He also had very regular visits from his sisters and his good friends Lee and Dean. Despite this, we all in our own way felt guilty about not being able to care for him ourselves. We had to recognise our own limitations, and did what we believed was the best thing for him.

Perhaps the most troubling thing about the number of people regularly visiting Dad was the fact that all of us at some point in time or another recognised the neglect and the missed care that he was suffering while living there. My mother, sister, brother and I all at one point or another bailed up the facility manager to ask why his medication hadn’t been given on time. This is a vital factor with Parkinson’s medication because levodopa, which converts to dopamine in the brain, can cause acute psychosis and dyskinesia when given in large doses – the shaking that makes Parkinson’s so recognisable. If one lot of medication is given late, it usually means the next lot will be given too early, etc.

In the first year that he moved from living under Mum’s care, he was admitted to hospital three times; twice for broken bones and once for an infection. We all got a little bit too used to the phone call from Mum saying Dad was in an ambulance on his way to hospital. Linking the public hospital system with his pharmaceutical requirements was the next mess that Mum would have to deal with. Sometimes it would take a full day for the hospital to get access to his medication, by which time he would be in even more pain than he was when he came in and far more confused. Mum took it on board herself when she realised this was a recurring problem, and started making sure that he had his pre-packed medication with him. She would sometimes spend an hour or more navigating hospital systems to ensure Dad would be administered his medication on time and by a professional.

Eventually a decision was made that Dad wouldn’t be allowed to walk around on his own at all anymore, it was too much of a risk for him. Of course, it didn’t matter how many times anyone told Dad that, he was also suffering from Lewy Body Dementia, so he wouldn’t remember that he wasn’t supposed to get up without getting help. So if he was sitting at a table in the recreation area and wanted to get up and walk outside, he would attempt to do so. If there happened to be a carer or nurse around that saw him, they would jump up and call out for assistance (Dad was a big man) to help him.

Let me be clear, the nursing and caring staff were all doing the absolute best they could to look after Dad and all the other residents living in the facility. But there were rarely enough of them to provide even the basic level of care well.

Recognising my audience’s capacity for nuanced debate, I ask for your attention about the state of aged care in our country at the moment and what it is that needs to change. The list is long, but for the sake of brevity I’ll address the things I see as key and to which the solutions are fairly easy to identify.

The national Aged Care Act 1997 currently governs the aged care sector. When the legislation was passed, the demographic of people going in to aged care was changing. Now, about half of the people living in aged care facilities have dementia, depression or some other form of mental illness or behavioural condition.

“The proportion of older people requiring high care for complex needs, which includes assistance with all activities of daily living such as eating and bathing, has quadrupled from 13% in 2009 to 61% in 2016.”

It follows that facilities tasked with caring for our elderly should have clinically qualified staff on shift at all times and that there should be enough of them to give adequate care.

Research tells us that on average, people living in aged care facilities need a minimum of 4.3 hours of nursing care per person, per day. It doesn’t seem like a lot, does it? Sadly, based on current reports, some residents receive considerably less than this. On average. There are days when some residents get as little as half an hour of nursing care.

There is currently no legal requirement to have even one registered nurse on site 24/7. Clearly, this needs to change.

In an effort to cut costs, many privately owned facilities are now also moving toward increasing the tasks currently undertaken by assistants in nursing, also referred to as personal carers, including administering medication. In the acute sector in public hospitals, administering even paracetamol must be done by a Registered Nurse. In aged care facilities, where more than 61% of residents require high care for complex needs, however, we are told it is OK for someone who has undergone 6 weeks of training (as opposed to 3 years of higher education) to distribute medications – and even complicated medical regimens – to people with a number of chronic health conditions. Administration of medications is controlled by state legislation, and for the safety of residents must be tightened so that only registered and enrolled nurses can administer medications in aged care facilities.

Currently, the funding model (Aged Care Funding Instrument) does not require aged care providers to show how much of the public investment is spent on staff in these facilities, and how much is going toward lining the pockets of the shareholders. Clearly, this needs to change.

My Dad was a beautiful human being with a lot of love for life and his fellow human beings, as well as the planet. Watching him suffer through the indignity of living in an understaffed aged care facility was hard on all of us, but hardest on him, and I believe it not only shortened his life, but lessened the quality of it in the end. It is unacceptable that this is going on in our country, and I will be vigilant in my fight to see it change. I hope you’ll join me.

If you would like to get involved in campaigning on this issue, please join the ANMF campaign and get in touch with your local nurses union: www.morestaffforagedcare.com.au.