Next week is Dementia Action Week and provides an important time to learn more about those in our community who live with this diagnosis every day. We speak to local Donvale resident Brian Quirk who was diagnosed with Alzheimer’s Disease, a form of dementia, in 2017, and his wife Mary about what it is like to live with dementia.
It was months before his formal diagnosis that Brian started noticing some signs that made him wonder if he may be in the early stages of dementia. He contacted Dementia Australia and got a booklet and found himself relating to a number of indicators mentioned, and then spoke to his family.
Mary, who has worked with people with dementia, their son Ben and daughter Amy, a nurse, had also noticed signs. Brian met with his GP and then other doctors and finally a diagnosis was made.
“I can’t remember the early days of it,” Brian says. “But it wasn’t an overnight thing. It was very gradual. Once the diagnosis came my GP was very helpful and that was really appreciated. He referred me to a Geriatrician who I very much respect who said there was no reason why I shouldn’t get on with my life and so that’s the approach I have taken. From a personal perspective I just want to be treated normally.”
This vigour for life and living it to the full comes across strongly when speaking to Brian. He has a razor sharp sense of humour and quick wit and he is a true raconteur as he tells tall stories peppered with jokes while his wife Mary laughs along saying, “Take that with a grain of salt!”
“My friends are true blue and they have been a big source of support. Although,” he jokes, “It wasn’t a chore telling them as most of them aren’t too bright anyway.”
Mary says their friends have been really supportive, which has been very helpful for them as she knows that some people find it really hard to accept that their loved ones will change.
“Our friends have been amazing,“ she says. “Brian and I started courting when we were 16 and we have many friends from that era, with some newer friends too. A lot of them have Brian’s sense of humour so they take the mickey out of him, but they have also been extraordinarily supportive.”
“But even more importantly, Brian has owned his dementia," Mary continues. "It’s a huge thing and from my point of view has been pretty wonderful. We need to accept it. And I admire him so much for accepting it."
Mary says it’s important to be really upfront in talking about the diagnosis and the future.
“You do need to talk about it. Both Brian and I as a couple and also us as a family. To really face it. This is a grieving process for all of us, both family and friends. And it’s been important realising that it is. And accepting that it is that way,” she explains. “You still need to plan for the next stage of your life. It’s all about management of it as well. And living as normal a life as possible.”
“Our daughter has been very involved as well. She adores her Dad, as does his son Ben, and Amy has been a big player in this. As a nurse, her experience working in aged care and ‘navigating the health system’ has been a big help to all of us.”
Brian and Mary both emphasise the importance of having practical, reliable information and support of healthcare professionals and services once you have a diagnosis. They are active members of the Manningham Dementia Alliance Group and appreciate how proactive it is within the community.
Brian says the most important thing for people who have been diagnosed with dementia is to know that is not the end of the world.
“It’s a life changer but it is not leprosy, it can be dealt with,” he says. “It’s not a fun time but given it’s there it’s a matter of making it work. You can still live a good life, notwithstanding the challenges. So while it’s important to plan for the future you can still do the things you love and enjoy.”
Dementia Action Week will be held from 21 to 27 September. To find out more information visit Dementia Australia. Or visit our webpage to discover more about how we are creating a Dementia Friendly Manningham.
Image: Mary and Brian Quirk