A WIFE, mother, sister, grandmother, aunty, mother-in-law and friend, but at only 58 years of age Karlene Stone’s family started to notice changes in the usually outgoing woman.
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Approximately 24,000 people in Australia under the age of 65 are living with Early Onset Dementia – Gunnedah resident Karlene Stone is one of them.
In the lead up to the Gunnedah Memory Walk and Colourful Fun Run on October 19, which raises funds for Alzheimer’s Australia, Karlene’s daughter Taryn Ross, decided to speak out about her mother’s condition.
Karlene was diagnosed with Frontotemporal Dementia (FTLD) in June 2012, but the family started to notice changes in her in December 2011.
Normally outgoing and sociable, Karlene was starting to display signs of reclusive behaviour.
“We first noticed something was ‘off’ with mum when she wasn’t engaging in converstation like she normally did,” Taryn said.
“We thought maybe she was depressed, she also had diabetes, so there were a lot of factors that covered the signs for quite a while.
“She wouldn’t interact with people, was lacking self control and would sometimes do inappropriate things like play with her iPhone while at a lunch date with her friends – something she would have never done before.”
Little did Karlene’s family know, six months down the track she would be diagnosed with something they didn’t even know existed.
“A week before Christmas, we began the long journey of tests to determine what was wrong – this was very hard because mum was completely in denial and we felt as though we were treating her like a child,” Taryn said.
“After the first round of brain scans, I remember mum pretty much skipping out of the neurologist’s office excited that she didn’t have any sign of a stroke, tumour or Alzheimer’s disease.
“She said, ‘there is nothing wrong with me, I’m fine’.”
But there was one more round of tests to complete, cognitive behaviour.
At this stage, Karlene’s daughter-in-law Kim Stone started to research dementia as she worked in aged care and was recognising the signs of this incurable condition.
Kim recently wrote on the Memory Walk’s Facebook page her feelings about Karlene’s illness.
“For me, the biggest change was communication, previously Karlene and I would regularly talk about everything and nothing at all,” Kim said.
“As the disease progressed Karlene was starting to lose the ability to maintain what is known as spontaneous conversation skills, so it was a great sense of loss and confusion to me when suddenly my confidante, advisor and sometimes unpaid therapist seemed disinterested in my life or even basic conversational catchups.
“In the lead up to diagnosis, researching and learning about FTLD helped me to understand the reasons behind certain changes and what to expect.”
In June 2012, Karlene received her diagnosis.
“Mum cried in the neurologist’s office, but by this stage because we had already diagnosed her ourselves, it wasn’t a big shock to the rest of the family,” Taryn said.
“On the drive home mum said she was going to prove us wrong and I told her that would be wonderful and we would love nothing more.”
Karlene was also diagnosed with Progressive Supranuclear Palsy, which affects her eye movement and balance.
It is just over 12 months since diagnosis and Karlene’s husband Michael has become her full-time carer.
“Mum’s particular dementia is quite aggressive and partnered with her eye and balance issues, we have watched a quick decline in 12 months,” Taryn said.
“Homecare staff come in and help dad take care of mum on a daily basis and we help out where we can.”
Taryn said the hardest parts are watching her slip away and become so dependent on others for everyday things and the family missing out on a person who was once the glue that held them together.
“Mum was completely independent and the family ‘rock’, but now the roles have reversed – dad has had to learn to cook,” Taryn said.
“It’s a tough feeling treating your own mother like a child, she has been a great mother and a wonderful nan.
“She has always supported me, my brothers, Brock and Troy, and our families and looked after our kids.
“Explaining to my children why their nanny was now ‘different’ was something you shouldn’t have to do.”
Taryn said just after diagnosis, they took their father Michael to his first Dementia Seminar in Tamworth, knowing eventually he would become Karlene’s full-time carer.
“A weight lifted off his shoulders, knowing he was not alone and the stories of other carers really helped him come to terms with mum’s illness,” Taryn said.
Michael, Taryn and Kim attend local Dementia Carer’s Support Group sessions on the first Thursday of each month at the local Community Care Centre.
“The support we have received from local service providers has been amazing, they are so caring and have so much advice,” Taryn said.
“This is where the idea for the memory walk formed.
“The walk is to make people aware that it’s not just the elderly affected by this brain disorder and to promote the help and services available.”
Taryn said while the family has come to terms with Karlene’s condition, watching her deteriorate takes its toll.
“The hardest part is that we are grieving her before our eyes,” she said.
