Cathy roth has spent much of her life helping others in need. now, she’s focusing her energy on giving her husband john the care and support he needs, while studying a phd, writes greta lannen.
There’s just one gift that Cathy Roth hopes to give her husband John – to make certain the end of his life isn’t as horrific as the beginning of it was. It was a life that started in war-torn Hungary, where John lived through bombings and terrible medical conditions.
He arrived in Australia at the age of five as a refugee with no English and was enrolled in boarding school. Time spent with his parents was restricted to six weeks a year as his father, a doctor, moved to Papua New Guinea to work because he wasn’t allowed to work in Australia.
Now, at the other end of his life, at age 81, John – a grandfather and former surgeon – faces more adversity as he navigates a life with dementia. And by his side through it all is his wife of 54 years, Cathy. A wife, carer and advocate as devoted and dedicated as they come.
“He comes from such a tragic early life. I guess I don’t want the exit end to be as horrific as the entry end. He deserves more,” Cathy says. “It’s the only gift I can give him.”
When John was diagnosed with dementia 11 years ago, there was a sense of déjà vu for Cathy who had, between her own work, nursed John’s parents with the same disease.
John had spent his working life as a tenacious and compassionate surgeon, without ever taking a day off. Knowing what her husband was capable of and what he had achieved, Cathy was dismayed at the lack of intellectually stimulating and challenging support for John.
She was heartbroken witnessing her husband’s pain and loss in the wake of his diagnosis and knew others would be living in similar situations, so in 2017 she established PALZ – Professionals with Alzheimer’s – supporting people from high-powered work environments who are in the early stages of Alzheimer’s disease, or similar, to maintain dignity and respect through active participation and interaction within a socially and intellectually stimulating environment.
“I didn’t want John to be embarrassed and confronted by a disease,” Cathy says. “I wanted him to be able to talk about it, not have people talk about him with the disease. I wanted him to maintain his dignity and self-respect and for people to continue to give him that respect.”
The journey is challenging but it can have some very beautiful moments.
Members of PALZ come from high-functioning roles – doctors, engineers, lawyers – and the group not only reduces their social isolation but that of their partners, who often also come from high-functioning roles.
Cathy worked closely with Dementia Australia to set up PALZ. The group quickly gained traction and has been joined by passionate people including Associate Professor Michael Woodward, head of aged care research and the Memory Clinic at Austin Health and PALZ patron. He says Cathy and PALZ have filled one of the biggest black holes in dementia care. There are now PALZ groups interstate and in the UK.
Cathy is no stranger to helping people. Community work has been ingrained in her life since childhood.
As a child, it was bottle drives with the Scouts and cleaning at church. As an adult, it was working on kindergarten committees, at school tuck shops, and in community leadership roles. Cathy says it wasn’t necessarily her ambition to step up, but her responsibility.
Her significant achievements (including an Order of Australia), goodwill, advocacy, contributions to the community and dedication to those around her are astounding, yet the humble woman is quick to talk them down and describes herself as a simple person.
“I’m not an ambitious person, I’m a very ordinary person to whom extraordinary things have happened. I can’t believe the (good) things that have happened. I sort of think ‘Why me?’.”
Those close to Cathy would in fact describe her as an extraordinary person.
Cathy was the first female president of the Geelong Chamber of Commerce and first female president of Geelong Central Rotary Club in 1990, which made her the first female president of any Australasian Rotary Club, in what had been a men’s-only club until 1989.
Her new role in a male-dominated club wasn’t without its challenges. At one event, while walking into the venue behind 300 men, one of them turned to her and said, “Ah, the ladies are in the kitchen over there, love.” When she was introduced as the guest speaker at another event, the audience full of men turned around and faced the back wall.
With time, her own dedication, and the support of some senior male Rotarians, the tide turned for Cathy and other female members.
“Gradually I think that they came to realise I wasn’t doing it to prove any points. I wasn’t wanting to be a suffragette or anything. I really just wanted to be a good Rotarian,” she says.
Professionals with Alzheimer’s (PALZ) supports people from high-powered work environments who are in the early stages of Alzheimer’s disease, or similar, to maintain dignity and respect through active participation and interaction within a socially and intellectually stimulating environment.
“I didn’t want John to be embarrassed and confronted by a disease,” Cathy says. “I wanted him to be able to talk about it, not have people talk about him with the disease. I wanted him to maintain his dignity and self-respect and for people to continue to give him that respect.”
Members of PALZ come from high-functioning roles – doctors, engineers, lawyers – and the group not only reduces their social isolation but that of their partners, who often also come from high-functioning roles.
Cathy worked closely with Dementia Australia to set up PALZ. The group quickly gained traction and has been joined by passionate people including Associate Professor Michael Woodward, head of aged care research and the Memory Clinic at Austin Health and PALZ patron. He says Cathy and PALZ have filled one of the biggest black holes in dementia care. There are now PALZ groups interstate and in the UK.
Cathy is no stranger to helping people. Community work has been ingrained in her life since childhood.
“The journey is challenging but it can have some very beautiful moments.”
“Now it’s totally and utterly an organisation of people embracing every colour, creed, gender, attribution. It’s just good people wanting to do good things for other people.”
She recalls the fundraising effort by her Rotary club after the 2004 Boxing Day tsunami, to support the rebuilding of a P–12 school.
“When people respond in a calamity it draws on the purest in them,” she says.
The same could be said about the way in which Cathy has responded to her life’s greatest tests.
As John lives each day with the progressive disease, Cathy says they are realistic enough to know it will have an endpoint. They discuss it and spend time trying to make it as far away as possible by keeping their bodies and minds active with walks, drives, train trips, socialising, and watching discovery and history TV shows. Cathy strives to “bring the world to him.”
“I haven’t ever stopped treating John as the husband I love and respect and a person who has contributed greatly to society, so I respect him, I talk with him,” Cathy says.
“I’ve said to John many times that he is an agent of goodness because he so humanely wears his disease. He empowers people to be able to be good, to be able to share their journey, to be able to make a difference in their world. I’m so proud of him.”
Cathy praises John’s specialists and GP and says they treat John as a person, not a patient.
After John’s diagnosis, the Manifold Heights couple became involved in every type of research accessible to them. John has taken part in multiple trials through the Austin Hospital, they’ve worked with the National Ageing Research Institute, spoken at conferences and seminars, and joined committees – all in the name of advocacy and the hope it makes a change.
Cathy’s passion for dementia research and carer advocacy was so palpable that John’s specialist said to her, “If you care so much about it, why don’t you do your PhD?”
So, at the age of 78, Cathy has begun her next “adventure” and is studying a PhD at the University of Melbourne, researching the impact of active advocacy on carer load, not long after she completed her Masters in Leadership in 2020.
“I can see the benefits that advocacy brings for the person diagnosed, but if I be truthful, I’ve got a lot out of it myself, so maybe there is actually a connection,” she says.
Cathy encourages people dealing with a dementia diagnosis to do their research, visit a GP, a dementia specialist, lawyer, and contact Dementia Australia.
For the family and friends of a person diagnosed with dementia, Cathy’s advice is to “retain the person.” It’s what she, her and John’s children Tracy, Christy and Paul, and their nine grandchildren have been lovingly doing for John ever since his diagnosis.
“That person is the person you loved and married and cared for and they still care about you. The relationship will be different but still so much the same,” Cathy says.
“The journey is challenging but it can have some very beautiful moments.
“I’ve learnt that things don’t matter, that at the end of the day if you are standing in an empty field with no-one around you and nothing in your pocket but you’ve got each other, you can tackle the world. You just have to want to.”
