For Rachel's father, a positive COVID-19 diagnosis was just the start — another symptom made it worse

Rachel* says her elderly father’s coronavirus diagnosis 17 days ago has left him isolated, confused and unable to understand what’s happening to him.

She believes Edmund* now hates life at the aged care facility he calls home, which has around 50 confirmed coronavirus cases.

Rachel, who speaks to her 83-year-old father on the phone about 10 times a day, says the disease is impacting his cognitive ability as well as his physical health.

Edmund cries constantly on their calls and has been suffering from delirium since testing positive.

Because of the virus, he is immobile. He’s also lost weight.

“I think it’s just his worst nightmare at the moment,” Rachel says.

Separated from her dad, Rachel doesn’t know what to believe

Edmund — who has Parkinson’s disease and high blood pressure — has been living in the aged care facility on the outskirts of Melbourne since March last year.

Life there is barely recognisable now compared to what it was before.

All residents are under lockdown.

In April, Edmund’s wife died. But he wasn’t allowed to attend the funeral because of the restrictions.

Meanwhile, family visits have either been restricted or completely out of the question since March. Rachel hasn’t seen her dad since June 5.

And all this was before he contracted coronavirus.

“It’s really hard to say how he’s going now [because I haven’t been able to see him],” Rachel says.

“He’s either very clear and knows what’s going on and maybe the facility is unsure and then there’s the other way around and the facility’s pretty sure and dad’s unsure.

“He’ll tell me one thing and the facility will tell me another thing.

“They’ll tell me he’s been out for some fresh air and he’ll tell me he hasn’t.

“And I don’t know what to believe, because dad has very extreme needs at the moment.”

But there’s at least one thing she knows he is very clear on: isolation and quarantine are inescapable parts of life in aged care homes during the crisis.

This reality terrifies him.

A young girl's hand over an elderly man's hand sitting on the arm of a chair.A young girl's hand over an elderly man's hand sitting on the arm of a chair.
Rachel hasn’t seen her father since the beginning of last month.(ABC News: Natasha Johnson)

This is why Rachel isn’t telling her dad the details

Rachel says a doctor at the facility told her if Edmund made it past 21 days with coronavirus, he might be OK.

It’s been 17 days now, and she hopes he will survive the virus.

But she hasn’t told him the particulars of his condition and how coronavirus is interacting with his underlying health conditions because she doesn’t know how — or if he could cope with the burden of the information.

Even when she does tell him certain things about his condition, she says she doesn’t know whether he understands her.

“This last fortnight, he’s just deteriorated to the point where I don’t think he’s going to bounce back,” Rachel says.

“He’s just so scared. I don’t give him the particulars because I don’t want him to jump to any conclusions and make his mental health worse.

“Three days down the track is like a lifetime for him at the moment. So I don’t want him to think that it’s going to take forever to get through this.

“I want him to just hold on and have a little bit of hope.

“I understand he doesn’t have much time left on this Earth, but I would like him to have as much quality of life as he can possibly have,” she says, her voice breaking.

What happens when you isolate those with dementia or a cognitive impairment

As the coronavirus crisis gripping Victoria’s aged care sector intensifies, so too have the challenges around treating and communicating with residents most at risk.

While those living with dementia or a cognitive impairment may be unable to explain potential symptoms or express pain or discomfort, they are also often unable to understand broader directions around infection control and prevention.

Geriatrician and aged care specialist Susan Kurrle says it’s almost impossible to isolate someone in a dementia-specific unit.

“You have to lock them in their rooms because they don’t remember they can’t come out,” says Professor Kurrle, whose mother is also living with dementia in aged care.

It’s a multi-faceted problem, with no easy solutions.

Lacking sufficient self-quarantine measures could expose patients to a higher chance of infection, international research published in the Lancet medical journal has concluded.

But restrictions, while necessary, can also lead to behavioural problems.

“In a dementia-specific unit, people tend to be allowed to wander. To stop that then causes other problems, like aggression and agitation,” Professor Kurrle says.

And that’s just considering dementia — those in care homes live with myriad health conditions that make treating and explaining the intricacies of coronavirus difficult.

This is what one expert says aged care providers should do

With about 50 per cent of residents in residential care living with dementia, the scale of the challenge is significant.

However, there are often “general communication problems” among many older patients, which require a tailored response, notes Kate Gregorevic, a geriatrician, internal medicine physician and author.

“A lot of older Australian’s don’t have English as their first language, and particularly in people who have dementia, they might lose their second language like English,” says Dr Gregorevic, who works in both acute hospital medicine and community settings.

“So having other family or, particularly in a hospital setting, having formal interpreters in, is really helpful.”

And then there’s delirium, which Dr Gregorevic explains is a sudden decline in memory and thinking.

“People with dementia are at greater risk of getting delirium, so becoming more confused from an illness, or even from a new environment,” she says.

To ease this, Dr Gregorevic says hospital doctors often remind patients with delirium where they are and tell them what day it is.

“Even just natural daylight … so people don’t get disruption in sleep-wake cycles, appropriate food and normal time, with family members, is so important for helping.

“But at the moment we’ve got a blanket ban on hospitals.”

As Victoria reckons with a resurgence of the virus, Professor Kurrle believes aged care providers need to focus on ensuring staffing is “consistent”.

When carers are familiar with their residents, she says, they are better positioned to identify when there is a behavioural change that may be due to an underlying issue, like a sore throat.

“I think that’s something that’s going to come out of this pandemic, stop sharing staff across these facilities because it’s not just bad for COVID, it’s bad for residents.”

Rachel says this has been a concern for her and her dad.

She puts it bluntly: “I don’t like the casualisation of the workforce.

“And if they could attend to peoples’ financial needs a little better they would maybe have better trained staff.”

What role should families play in all of this?

Professor Kurrle believes it’s imperative relatives keep abreast of any changes in behaviour, and maintain a sense of normality where possible.

“I make sure when I go [to visit my mum] that I always take [her] for a walk and speak to the staff and say, ‘What do you want me to do? Do you want me to get her a cup of tea?'” she says.

“I think there’s a big role for family, we use them in hospitals regularly with people who are acutely confused [and] it’s very, very effective.

“It’s how we do that in residential care and stay within the rules that is a little harder, and I think that’s something [providers] are dealing with.”

It’s a sentiment echoed by Maree McCabe, the CEO of Dementia Australia.

Above all, loved ones must abide by coronavirus guidelines, she says, and in some cases, that means they may be unable to physically visit — as has happened to Rachel.

But Ms McCabe believes maintaining a sense of connection will be more important than ever as the pandemic continues.

“One of the things about dementia is stimulus is a sensitive balance,” Ms McCabe says.

“Too much is disruptive and too little can exacerbate cognitive impairment, and when that happens they’re not skills people with dementia can get back.

“So making sure that they have contact with family and loved ones is really important, and if they’re not able to visit, [do it] over the phone.”

Waiting for the director to say ‘cut’

One of the last times Rachel saw her father, the pair went over his end-of-life plan together.

“He said he doesn’t want to be alone when he dies. He wants his family there. And it just spoke volumes about how he didn’t want to be alone, ever,” Rachel says.

Edmund’s care home is currently monitoring his blood pressure due to concerning, unexplained bleeding.

He may need to go to hospital.

But Edmund is adamant he doesn’t want to; he is afraid of being isolated even more than he already is.

“I feel like I’m trapped,” Rachel says.

“I feel like I’m waiting for the director to say, ‘Cut.’

“It’s just a nightmare. Sometimes you’re coping … and other times you just don’t cope.”

*Names have been changed to protect privacy.

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