In 2023, Ray Sullivan faced an even shuddering obstacle. He stepped into the role as caregiver for his wife, Miki, who had been diagnosed with early onset dementia. This affliction, finally diagnosed correctly in Australia after a long misdiagnosis as depression, has completely altered the course of their lives. As Miki’s condition deteriorated, Ray’s journey to find appropriate care in Ararat became an uphill battle. Long waiting lists and a lack of specialized personnel further complicated the ordeal, particularly for a plan to help treat Miki’s violent outbursts.
The young couple soon married and began raising two sons together. Since their youth, they’ve had an unbreakable bond, one that began when Ray taught Miki English. Through Ray’s experiences at the Butterworth Air Force base in Malaysia, his relationship with others grew stronger. It was there where he fostered a love for exploration and experiences of life. As Miki’s memory and personality started to shift under the effects of dementia, Ray quickly became lonely and feeling burdened.
The Diagnosis and Its Impact
Miki’s early onset dementia diagnosis followed a trip to Japan with their son in 2022. This was the start of a tragic road for Ray who as a spouse could only sit by as Miki’s mental capacity crumbled.
“I was confined to home and I didn’t have much else to do besides think about my wife’s wellbeing,” Ray Sullivan shared, illustrating the emotional toll that Miki’s disease has taken on him.
Despite his best efforts, locating an appropriate care facility in or near Ararat became difficult. The even bigger challenge, they found, was finding trained staff who could care for patients with aggressive dementia symptoms.
“It’s fighting a battle … trying to find a facility that will take Miki and with the facilities in Ararat the staff aren’t trained appropriately to handle people with aggressive symptoms and the waiting lists are getting longer and longer,” said Lyn Russell, a wellbeing advocate from the Ararat RSL, who has been supporting Ray throughout this ordeal.
Ray’s struggles were made more difficult by Miki’s ineligibility for government-funded aged care services because she is under 65.
Support and Community
Ray overcame this adversity, during trying times, he found hope and camaraderie at the Ararat RSL. Lyn Russell played a critical role by linking him with resources that were worth their weight. She persuaded him to join a referent’s diploma program for dementia care. This would provide him with the tools he didn’t know he needed to be a better ally for Miki.
“I’m often sending Ray material to read,” Lyn Russell explained. “It gives him a better understanding of Miki and the possible future that we can hopefully help her with.”
Ray has just exploded in terms of civic engagement. He is a passionate volunteer for the poppy day appeal and runs chess and card games at the RSL every fortnight. He even still teaches Japanese at the University of the Third Age, showing his dedication to keeping active and involved.
“Everyone here at the Ararat RSL has just been outstanding, they’ve always had my back,” Ray stated, expressing gratitude for the support he has received.
A Hopeful Future
Even with all that they’re up against, Ray is hopeful that they’ll be able to find a proper aged care center for Miki. He continues to stay hopeful that more resources will be made available for younger people living with dementia.
“She’s one of the younger generation that has this awful disease and we don’t have sufficient or enough facilities to cater for the younger people,” Lyn Russell emphasized, highlighting an urgent need for change in dementia care provision.
With immense courage, Ray has and continues to walk this challenging path. He is Miki’s savior, fiercely determined to ensure her quality care. His dream is to win a safe, ADA-compliant home for his beautiful wife to live in.
“Being posted overseas in Butterworth really opened my eyes; it made me realise I wanted to study and travel and do something with my life,” Ray recalled. This spirit of perseverance drives him forward even during the darkest times.
