It started with a belt loop on a pair of jeans.
Robert fumbled to fasten the pants around his waist one morning. Then another. Soon it was a daily struggle that became part of his dressing routine.
He was 58.
At first, Robert’s wife Trish, an aged care worker, thought it was a sign of her work world pushing in. She put it down to noticing things that perhaps she maybe shouldn’t. Almost everyone’s fine motor skills start to decline as they age – don’t they?
But then the forgetfulness started, too. Robert would lose his keys or his wallet, only to find them somewhere strange. He would get frustrated with himself. Confused by his actions. Suspicious. Withdrawn.
The little things were slowly becoming bigger issues. Reluctantly, Robert made an appointment with his GP. After a series of tests and scans, a neurologist told him what he already knew: things were not alright.
The exact word was “dementia” and almost immediately Robert started imagining life in a nursing home. Visions of being ignored, of feeling unstuck of losing his mind took over. He wouldn’t be able to eat the food he enjoyed, participate in his favourite activities, be around the people he loved every day.
He couldn’t bare it.
As an aged care worker, Trish assumed she had enough knowledge to provide Robert with the necessary support to keep him at home. In reality this decision meant agonisingly long days and sleepless nights.
“It was more than I bargained for”, she says.
Losing your husband is never easy, but dementia is particularly cruel. There’s no graceful decent – it is an unpredictable illness that eats into the sweetest parts of life, changing constantly. Trish endured watching Robert lose his memory to the point where he no longer recognised his family.
When Robert was diagnosed in 2014, the South Australian couple had only just celebrated their eighth wedding anniversary. While their relationship blossomed later in life, their families had known each other for years. Their mothers were once co-workers and Trish’s father had catered Robert’s 21st in the late 1970s.
The pair relished life together, first as colleagues at Robert’s blue gum drying business, and later as husband and wife. They made friends easily, welcoming neighbour and the Saint Agnes community into their home regularly.
Trish says “he loved to chat”. Until the conversations turned into half-conversations, that ended before they begun.
Robert’s decline wasn’t swift, it was more of a steady progression. Over time he became increasingly more erratic, paranoid, agitated.
Some days the paranoia was so extreme he would accuse Trish of having an affair with the gardener. “I’d have to put the TV on and tell him that someone else’s lawn was being worked on,” she remembers.
While they received assistance from the government, Trish was frustrated by the lack of human compassion.
She recalls a visit from an NDIS speech pathologist who advised that Robert could no longer eat his favourite ice cream – a Peters Drumstick – because he might choke on the peanuts.
“It was at that point I said ‘stuff it’. What’s the end result? Yes, he may die a bit quicker, but he may die a bit happier. Obviously proper care has to be taken but you do what you need to do to make the person happy.”
Eventually, it got to a point where Trish couldn’t manage Robert’s symptoms on her own anymore. She didn’t have a lot of family support. At the time Trish’s daughter, Kelly, lived on the other side of the world while her sister, Jenny, was a plane ride away in regional Victoria. They visited Jenny once in the months following Robert’s diagnosis but the travel agitated his symptoms. They never made the trek east again.
After driving on the wrong side of the road due to sleep deprivation, Trish was connected with Dementia Australia’s Nightingale program. The Nightingale Program is a palliative model of care, provided by specialist nurses throughout South Australia. The program provides strategies and advice to support people living with dementia, their families and care providers with a focus on promoting choice and wellbeing.
Trish acknowledges that the term ‘palliative care’ can be confusing for some people. Many presume it’s only for terminal cancer patients, but really it’s for anybody who has been diagnosed with a life limiting condition.
“A lot of people don’t realise that dementia causes death,” Trish says. “It’s one of the biggest misconceptions I noticed while caring for Robert”.
It is difficult to know what action to take or what plans to make when the love of your life is diagnosed with dementia. But Trish is grateful she asked for help to care for Robert when she did.
The carers from the Nightingale Program enabled Robert to live his life fully and on his own terms – even when he was bed bound. “They treated him like a person”, says Trish.
She remembers one carer watching the races with him, placing imaginary quinellas, trifectas and multi-race bets. “He won all sorts of money in his brain. There’s not enough of these people,” she muses.
Another carer encouraged Robert to try high protein Indian foods alive with flavour and spice. “This was a man who I couldn’t even get to the local Chinese restaurant!”, laughs Trish. A third carer taught him to play the guitar.
Since Robert’s passing, Trish has maintained a close connection with one of the nurses from the Nightingale Program. “It’s uncanny really,” she marvels. “Whenever I think about getting in touch, she always manages to beat me to it. And I think, how did you know I was going to contact you about something? It’s just, it’s uncanny. “
These days, Trish finds joy spending time with her children and grandchild. She misses Robert’s warmth and wit. The passionate conversations over dinner. But she’s also made peace with his illness and his death, thankful that he was able to live as comfortably as possible during his final months and grateful that one of his last moments was walking Kelly down the aisle.
She urges anyone caring for a loved one with dementia to consider the support options available to them.
“You need to be a bit bloody stubborn and ask for what you and the person you love truly need. I could manage some parts, but I couldn’t manage it all…It really is okay to ask for help. In fact, it’s the thing that saved me.”
Live the life you please is a film-led social impact campaign that will change the way you think about the last chapter of life. The campaign aims to improve awareness about palliative care, advocate for increased access to essential palliative care and related health care services for all Australians, and help to start important conversations about living the life you please until the very end.
To get involved, please click here.
Special thanks to Trish and Dementia Australia’s Nightingale Program for participation in this story.