Only four years earlier, the couple had been overseas raising money for an institution that cares for people with disabilities, when the first signs of Carmen’s dementia began to appear.
But now faced with the reality that his wife would not be returning home, Jim reluctantly agreed that his wife would be better suited to an aged care environment.
Although understandably apprehensive, the caring nature of the staff at Fresh Hope Care Pendle Hill helped to put Jim’s mind at ease.
“They call her Mum,” said Jim. “I feel blessed that my wife is there. The way that they look after her, I have nothing but praise for the staff and the whole organisation.”
To say that Jim is a frequent visitor at his wife’s home would be an understatement. In fact, Jim spends just as much time at Fresh Hope Care Pendle Hill as anyone – outside of the residents.
However, recent lockdowns at the home due to government COVID protocols have pushed Jim and many other families of aged care residents to breaking point.
“I have visited my wife every day for the last three years. Sometimes I visit twice a day,” Jim told HelloCare.
“I love everyone working at my wife’s nursing home, but if they are forced to go into lockdown again, I am going to ask for release papers.”
Prior to the pandemic, understaffing in nursing homes was already commonplace in Australia, according to the Royal Commission. The presence of visitors within these homes allowed many providers to paper over the cracks of having a workforce spread so thin.
With this safety net now removed from many aged care facilities for the best part of two years, the systematic failures of aged care have been laid bare for the entire country to see.
Aged care needs better funding. Better leadership. Nuanced guidelines that seek to avoid blanket lockdowns, and most importantly, aged care residents surrounded by loved ones as often as possible.
“I am fully vaccinated and I already had the booster,” shared Jim. “I’m probably safer than most of the workers anyway.”
Jim added, “These people are human beings and I have done training for dementia and I know how important it is for these people to have interaction. When you stop that, you’re killing their ability to feel like a human.”
After being forced to endure close to three weeks away from his wife, Jim felt as though he witnessed her mental condition decline considerably, while observing her during video calls.
Once lockdown restrictions had been lifted and Jim was allowed to return to the home, he noticed an immediate improvement in her mood, which highlights just how important family interactions are for people living in aged care facilities.
“My wife doesn’t talk much, so speaking on video calls is not the same at all. Many people with dementia are non-verbal, so video calls don’t really work for them. They need human interaction,” explained Jim.
“It was hard to see my wife like that. We’ve been together for 56 years, so I know when she is not well. I can probably diagnose her better than any RN [registered nurse] in there because I know her so well.”
While Prime Minister Scott Morrisson and other state leaders have spoken publicly about their willingness to avoid lockdowns for the greater public, unfortunately, nursing home residents are not afforded the same level of freedom or assurances from government.
Last month, an 89-year-old aged care resident living in Newcastle, NSW, made national headlines as it was revealed that he had been locked down in his room since Christmas and had spent 40 days alone due to ongoing positive cases at the home.
Worse still, he was only granted 15 minutes of outdoor time per day – which is less outdoor time than the average prisoner receives.
Sadly, this is not an isolated incident.
Upon accepting the majority of recommendations by the Aged Care Quality and Safety Royal Commission, the government vowed to adopt a “human-rights-based” and “person-centred” approach to future aged care regulatory framework and governance.
While lockdowns are a simplistic way of managing risk in regards to COVID in aged care, Jim believes that a flexible approach that allows providers to manage their own risk would be far better suited to meet the needs of individual residents.
“The homes know the residents a lot better than the government,” Jim told HelloCare.
“The people at Fresh Hope Care are very transparent and I even have a direct line to the CEO, Lynn Bailey, who is always happy to speak with me. She knows the impact that this is having on the people, but they receive guidelines from the government.”
With COVID now closer to an endemic in Australia rather than a pandemic, the reality is that many more aged care residents are likely to die as a result of the disease.
According to Jim, the optics of aged care residents dying from COVID, and the fear of being deemed responsible for those COVID deaths, has left the government scared to make any changes to lockdown regulations – despite the toll that they take on residents’ mental health.
“If there’s an outbreak, and a few people happen to die in a nursing home, everybody’s up in arms and they start to blame the government,” said Jim.
“But in reality, what are they going to do? The virus is here to stay.
“I honestly think the reason that nothing is changing in these homes is because everybody is scared of being sued. People with family members in aged care need to be speaking up about this.”
So many of us have had the same experience as Jim In my case it is my 95 year old Mother — What a tragedy you live to 95 only to be robbed of 2yrs by covid and miss managed aged facilities — Because of under staffing these residents have been left in their rooms day after day or in the case of another resident left sitting at a wooden table asleep with his head on the table day after day !!!
Nothing has come from the Royal Commission it is a hopeless situation.
I totally agree. My late husband, who was bed ridden, was confined to his room for four and a half months of lockdown. He was not able to use the mobile phone due to dementia. The staff would connect us when they had time. Although they were face time calls I only ever saw his ear. We missed each other dreadfully as Like Jim I had been visiting daily. I grew angry at the loss of the diminishing time we had and increasingly worried about my husband’s mental health.
Why are some people locked up in dementia when they shouldn’t be? It breaks my heart. I have been witness to staff who talk ill of them in front of them and who never get to know them and only ever tell them to go back to their room. I know a man who’s behaviors are lately getting worse. He cannot sleep without talking 8n his sleep and waking up again and again to wander the ward. I have sat with him and talked about all sorts of things over the night shift and he loves a conversation and so do I. Such anlovel6 man. He has lived all over the world and when you listen to him his dementia seems to go away. Why do they have the wrong staff workng on these wards? They don’t care. It breaks my heart. Do families really believe their loved ones are better off in these places? They lose all hope for God sake! And yes alot of their behaviors become worse due to a lack of caring staff working on these wards and a lack of stimulation. Who decides that some people should be incarcerated in these places. Most could easily be cared for at home with the right carers and a few safety precautions in place.