It has been six months since Mary Paris's husband died, but after nine years looking after him while he had dementia she says she will always count herself as his carer.
"I say I'm still a carer because I value all the people that have been there for me, and to be honest, they've become very dear friends and like a support group," she said.
"One thinks when this journey ends like it did for me that you might be doing other things in life, but I actually value so much what the former carers and the carers that were there for me have done."
The 74-year-old Wollongong woman will share her experience - and the lessons she learned the hard way - as part of a panel at the upcoming Illawarra Dementia Forum.
Her husband Stewart West was the long-time member for the Wollongong federal seat of Cunningham and a minister in the Hawke Government, and was diagnosed with dementia in 2014.
After being alongside him for his career as a trade unionist, cabinet minister and environmental and immigration campaigner, Ms Paris became her husband's carer which she said wasa new journey for the couple to navigate.
"He had dementia for nine years and that journey in itself has been an eye-opener to everything, from the aged care system to dementia itself and what it can do," she said.
She said her main advice for anyone else who has become the carer to a loved one was to find ways to care for themselves as well as their loved one with dementia - which she learnt to do thanks to the network of support she discovered at the Illawarra Dementia Forum in 2017.
'Furious bidding' as Kanahooka property sold for the first time since 1966"At the beginning, I was totally unprepared for the journey because I didn't have any experience or knowledge about dementia, and I was a bit too proud to admit that I wasn't coping very well," she said.
"I've worked all my life and we've always managed, but as the journey progressed and as basically a Stewart changed, I had to change too.
"I became a better person, but I could only do that because I got the support I needed."
Ms Paris said keeping in touch with the other carers after Stewart's death was also about giving back to the dementia carers community in the Illawarra, as well as making up for lost time when she wasn't able to attend meetings due to COVID-19 and her husbands condition.
"Stewart was confined basically to bed and my day revolved around him, so I didn't have time to go," she said.
"After he passed I needed to go to say to them, thank you, because I got through those years because of them."
"And one fellow who'd only been to his second meeting came up to me and said 'I hope you keep coming because I think I can learn a lot because I'd like to keep my wife at home too'."
The free annual Illawarra Dementia Forum will take place on September 20 at the Fraternity Club in Fairy Meadow from 10am-3pm.
It falls during Dementia Action Week, from September 18, which this year is calling on people to "Act Now for a Dementia-Friendly Future".
Aside from the panel of carers, people can hear from the CEO of Dementia Australia Maree McCabe who will talk about the current situation with dementia in Australia and Dr Clair Langford, a geriatrician with the Illawarra health district who will talk about the diverse journeys for people with dementia and their carers.
People will also be able to hear about how to overcome barriers to seeking help, and what local services exist, while Professor Lezanne Ooi from UOW will speak about research into new medications for Dementia
To register for the event go to https://forms.office.com/r/9DXk3RHt63
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