Luke and Lisa’s story: Maintaining a sense of family 

For sixteen years, Lisa and I lived a wonderful life together.  Lisa was a high achiever who topped her university subjects and held senior roles in the Department of Justice. She was fiercely independent and social—she loved traveling, going to the football, following the cricket, and staying active with tennis, badminton, and running. Most importantly, she was a loving, caring partner and mother who spent many years as the primary carer for our three children.

In 2015, the first “little things that didn’t add up” appeared—grocery bags stashed and forgotten, or Lisa calling to ask where I was when I’d only just left for a work trip. I recall her saying back then, “there is something wrong with my brain.” Because of her intelligence, she was able to mask the decline for years. By the time she received a formal diagnosis in 2020, our family’s life plan was already “scrambled” – I didn’t know what to expect or where to go for help.

At the time, our children were aged 8, 9 and 11. As the disease progressed, I watched a woman who worked in complex legal environments lose the ability to write a complete sentence or draw a simple clock face. She would often become confused and agitated, forcing me to quickly step into the role of “care partner,” bridging the gap between Lisa’s version of events and the reality the children were seeing.

To preserve the children’s wellbeing, Lisa eventually moved into age-appropriate supported accommodation nearby. This allows the kids to ride their bikes to see her and take the dog for walks together, maintaining a bond based on love rather than the daily strain of the illness. I advocate to bridge the gap between diagnosis and support because, for Lisa, the present moment is the only reality she has left and as a family, we are focused on helping her make the most of whatever capabilities she has today.