A woman is now mourning the vibrant person her mother once was, as she faces life with a rare form of dementia. To preserve her mother’s memory, her devoted daughter has embraced a creative outlet her mother once loved, using it as a way to honor her legacy.
What began as a simple household chore quickly became a moment of concern when the daughter noticed her mother behaving unusually in the kitchen. A minor mix-up with silverware turned out to be the first warning sign of a diagnosis that would forever alter their family.
The Early Signs
In 2020, Kristy Adler and her husband were staying with her parents in Sydney, Australia, while the family bathroom was under renovation. During this time, Kristy began observing unusual behaviors in her mother, Susan. One afternoon, as Susan unloaded the dishwasher, Kristy noticed plates stacked on bowls, teaspoons mixed with tablespoons, and small forks grouped with larger ones—strikingly out of character for someone who had always been meticulous.
When Kristy gently questioned her, Susan snapped, “I’m so tired of worrying that much about everything. I don’t care anymore.” Other warning signs soon became apparent. Once a confident driver, Susan stopped going out at night, overwhelmed by the glare of headlights. At home, she misjudged distances, frequently knocking over wine glasses during dinner. Her emotional reactions also shifted. The mother who had long enjoyed family teasing would now cry when lightly teased, quietly saying, “Everyone picks on me.” Concerned, Kristy scheduled a visit to the family doctor.
Susan’s Initial Diagnosis
At the GP, Susan underwent a cognitive test, including counting backward by sevens from 100 and drawing a clock. She hesitated, asking, “Is 12 at the top?”—a chilling moment, especially for someone who had been a talented artist, capable of painting and drawing with ease. She failed the test, prompting her father to take her to a neurologist, who ordered a brain scan.
The results were devastating. Although Susan was only 59, her brain resembled that of an 80-year-old. She was diagnosed with early-onset Alzheimer’s disease, typically occurring before age 65. Kristy, who researched the condition, was stunned: there was no family history on her mother’s side. Yet the signs were impossible to ignore—Susan’s anger, confusion, and quiet defeat were unmistakable.
Amid this darkness, there was a small light: Kristy discovered she was pregnant. The announcement moved her parents to tears, and the arrival of baby Greta brought Susan rare joy. Yet, Kristy couldn’t leave them alone, as Susan’s condition had become unpredictable. There were moments of love, but tinged with sorrow, as Susan could no longer read stories or paint with her granddaughter, though her eyes still held warmth.
A More Specific Diagnosis and Rapid Decline
Four months later, Kristy took her mother to the Brain and Mind Centre at Sydney University, where a geriatrician provided a more precise diagnosis: Susan had posterior cortical atrophy (PCA), a rare form of Alzheimer’s affecting the back of the brain, gradually eroding visual awareness. This explained her driving difficulties and misjudgment of distances.
Doctors were uncertain about prognosis—it could be five years or as many as twenty. By 2024, Susan was already in a care facility and unable to move. During the years leading up to this, Kristy, pregnant with her second child, had bought her parents’ home to accommodate three generations under one roof. Living with Susan during this time was exhausting, especially while caring for a newborn and toddler. Susan, once independent and social, now required full-time care.
Kristy’s Challenges Balancing Motherhood and Caregiving
Juggling motherhood with watching her mother’s decline was profoundly painful. Kristy reflected, “Losing your mum to dementia while also becoming a mother is so cruel and unfair.” She mourned the parts of Susan that were disappearing—her warmth, laughter, and comforting presence.
Visits to Susan became exercises in grief. She needed help with every basic task, and even when she recognized her daughter and grandchildren, Kristy could never be certain if she truly knew who was there. The loss of the mother she knew felt ongoing.
Finding Solace Through Art
In the midst of this pain, Kristy turned to painting, the creative practice her mother had loved, as a way to cope and maintain a connection to Susan. She began sharing her work publicly, using art to preserve her mother’s memory and the moments they once shared.
Glimpses of Susan’s old self occasionally surfaced—a laugh, a name, or a fleeting memory—which gave Kristy comfort, though time remained limited. Her art became a tribute, capturing family memories, shared meals, and everyday moments, ensuring that Susan’s influence endured.
Paying Tribute and Sharing With Others
On October 21, 2024, Kristy posted a heartfelt tribute on Instagram, showing herself painting alongside one of her daughters, including images of Susan playing with her granddaughter. She introduced herself as the artist behind Kristy Adler Art, sharing creations inspired by family, memory, and connection. Each piece reflects her mother’s legacy, including the shared love of creativity and life’s small joys.
Through her art, Kristy connects with others grieving similar losses, turning sorrow into beauty. She donates 10% of her profits to the Dementia Australia Research Foundation, ensuring her mother’s influence benefits others affected by dementia.
Understanding Posterior Cortical Atrophy
Posterior cortical atrophy (PCA) is a rare, progressive brain disorder affecting the posterior cerebral cortex, including the parietal and occipital lobes responsible for visual processing. Symptoms often begin in the 50s or 60s and may include:
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Difficulty reading: letters or lines may appear to shift or blur.
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Trouble judging distances: affecting tasks such as parking or using stairs.
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Difficulty recognizing faces, objects, or familiar locations.
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Frequent collisions with objects due to impaired spatial awareness.
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Confusion with numbers and everyday tools, including appliances.
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Anxiety stemming from visual and cognitive changes.
PCA may accompany other neurodegenerative conditions like Alzheimer’s or Lewy body dementia. While there is no cure, treatments focus on symptom management, cognitive support, and coping strategies to maintain independence.
Through her creative work and advocacy, Kristy honors her mother while navigating grief, raising children, and transforming personal loss into meaningful art that resonates with others experiencing similar struggles.