My story started in the passenger seat of my mother’s new car. It was an updated model of the model of car she'd driven for 15 plus years, yet she found it totally confounding. I recall labelling things like the indicator and lights with sticky notes, but it was to no avail. I was baffled by how this competent and bright 60-year-old woman suddenly struggled with something as routine as driving.
It was 1989, I was 24 and had just returned from a year-long travel adventure around the world. Dementia was not something I knew much about. That changed very quickly when mum was diagnosed with early onset dementia. Watching the disease slowly consume her for the next fourteen years was devastating.
Maintaining mum’s quality of life was always our priority in managing her care. My aunt Lorna – who was also a nurse – took up the lion’s share of her day-to-day care. I had a young family at the time and knew that mum would have never wanted me to be her nurse. Within a fairly short time she had deteriorated and required more care than we could manage at home. Mum moved through the aged care system from respite to nursing home care. Soon she became unable to recognise her loved ones. She lost her mobility, speech, and could no longer independently use the bathroom or feed herself. Mum’s last seven years were spent in what I can only describe as a vegetative state. She had no quality of life.
Our family had regular discussions around medication. We felt that prolonging her life, at that point, would have been against her wishes. Ultimately, she sustained a fractured hip as she was being turned in bed. Many weeks later, she passed away.
Mum was caring, compassionate and bright. Her disease took away her dignity. Her death was painfully and needlessly prolonged. It is not the way she, nor anyone, would ever wish to die.
Not too much later my aunt, Lorna was also diagnosed with dementia. She didn’t have children and I became her main carer. Lorna was fiercely independent and was adamant that she did not need help. Like mum, Lorna was otherwise fit and well. Sadly, she too spent an extended period of time in a nursing home.
During the last five years of her life, she was in an appalling condition, suffering from agonising skin conditions. She required full assistance with all aspects of her life. Again, I was often querying her medication plans. I found myself pitted against a medical model of care that seemed to override consideration of quality of life. Lorna would have been horrified if she’d been aware of how she spent the last years of her life. She often told me prior to her illness “to just put a pillow over her head if she became too unwell”.
Both mum and Lorna suffered the same slow and painful fate. They were lost to their loved ones long before passing away. Their colourful lives, memories and identities became dimmer with every year they lived with dementia.
I have joined DWD WA in the hope that future amendments to current legislation will enable access to VAD, for those suffering from dementia. I believe we all have a right to self-determine when we no longer have quality of life and to die with dignity.
‘Who am I’
I’m married, a mother of two, plus a lively labrador pup, and currently a not-working teacher. Teaching came after caring for my parents and aunts came to a close. Prior to that I worked in finance and administration roles in a variety of sectors including the not-for-profit sector. My husband and I are luckily fit and well, and are enjoying catching up on a bit of travel. We’ve had an amazing time travelling and hiking in Albania, Italy and Iceland recently.
I’m currently volunteering in classrooms, helping out at an organisation supporting homeless families, and have joined DWD. I’m also a bit of a sport enthusiast and I play hockey, tennis and golf (quite badly)! Also, our lovely labrador, Billy takes a fair bit of time and in a quest to keep my brain active, I’m trying to learn Italian!
As dementia has had quite an impact on my life, I have signed up to a longitudinal study into Healthy Aging at the University of WA and subject myself every few years to some fairly significant cognitive testing. Hopefully research into the illness will result in some breakthrough in the years ahead!
By Julie Cinanni
Julie Cinanni's story was also covered by 7NEWS. The video can be viewed on the 7NEWS website here - "Julie watched her mother and aunt die with dementia. Now, she wants other sufferers to have a choice."