My brilliant mother was diagnosed with a rare form of dementia at the age of 59. I knew something was wrong by the way she unloaded the dishwasher

I was sitting at the dining room table while my mother unloaded the dishwasher and noticed that she was putting the utensils in the wrong places. Plates were on top of bowls in the cupboard, teaspoons were paired with tablespoons, and small forks were with larger forks.

It was unusual behavior because my mother Susan, who is now 63, had borderline OCD and was very particular about order. I brought it up with her and she snapped, “I’m so tired of worrying so much about everything. I don’t care anymore.’

There was more. My husband and I lived with my parents in their Sydney home for a few months in 2020 while our bathroom was being renovated.

At the time, she lost her confidence on the road and stopped driving at night because she could only see the headlights instead of the road ahead. She also misjudged the distances between things and often knocked over glasses of wine at the dinner table.

Ever since my brother and I were young, we would make fun of Mom for being the loser of the family – it was always good-natured, but now she would get angry at our nagging and run into her bedroom in tears. slamming the door behind her. I remember thinking how strange it was. When I once asked if there was anything else, she replied, “Everyone bullies me.”

I told her I wanted to make an appointment to see the doctor, which she agreed to. She was given a cognitive test: the first task consisted of counting backwards from 100 in intervals of seven, and the second task consisted of drawing a clock. She looked at me and asked, “Is 12 at the top?” I said I couldn’t help her.

Mom was an incredibly artistic person; she loved drawing and painting and was very talented. It was alarming to see her struggling to draw a circle in the doctor’s office. A few more questions followed, but it made no difference; she failed the test.

I thought to myself, ‘That’s not possible; my mother is only 59.’

Kristy Adler, seen at her graduation, noticed something was wrong with her mother Susan as she watched her unload the dishwasher. She was later diagnosed with dementia

Susan, now 63, is living in a care facility after her condition rapidly deteriorated this year. Kristy, pictured with her mother and daughter, doubts her mother will live to see another year

After the cognitive test, dadvertisement took her to a neurologist for a brain scan. It wasn’t good news.

My mother was not yet 60, but had the brain of an 80-year-old, the specialist said. The diagnosis was early-onset Alzheimer’s disease – the label they give to people who suffer from the disease before the age of 65.

I had been researching Alzheimer’s disease. It is often caused by a genetic mutation, but on my mother’s side we have no family history of this disease. It was a big question mark and I needed a second opinion.

I watched her process the grief before my eyes—anger, disbelief—before she sank into her chair, defeated.

There was one silver lining during this terrible time. That year, 2020, I found out I was pregnant and my parents cried tears of joy when I shared the news with them.

The birth of my first daughter, Greta, was a major distraction for my mother as she came to terms with her diagnosis and helped lift the fog of her depression for a while.

Although they developed a great bond, I couldn’t leave my mother and baby alone together. I just couldn’t do it with her deteriorating condition and forgetfulness.

I could see the love in her eyes, but seeing her unable to read a book to her own granddaughter or draw with her broke my heart every time they were together..

Meanwhile, as my family reckoned with my mother’s condition, I couldn’t shake the feeling in the back of my mind that something wasn’t quite right with my mother’s diagnosis.

A doctor told Susan that at age 59 she had “the brain of an 80-year-old” and diagnosed her with early-onset Alzheimer’s. A second opinion later revealed that she actually had a rare form of the disease known as posterior cortical atrophy

Four months later I took my mother to the University of Sydney Brain and Mind Center to meet with a geriatrician who confirmed my suspicions.

Her actual diagnosis was posterior cortical atrophy, another form of Alzheimer’s disease that causes cell loss at the back of the brain.

In this form of dementia, the first thing that is affected is a person’s visual awareness – which is in line with what my mother had said about her poor eyesight while driving.

The doctor could not give an exact prognosis – they said that mom could die in five or twenty years. But as I write this four years later, Mom is living in a healthcare institution and cannot move. The five-year estimate was probably spot on.

In 2022, we underwent another major life change when I became pregnant with my second child. My husband and I needed more space, so in June of that year we bought my parents’ house and all lived together for 18 months. It was a challenging time, but looking back, I am so grateful that I had that time with my mother.

After the birth, my husband went back to work and I took care of my two daughters and my mother at home. It’s hard to describe how bittersweet it was to watch my girls grow and develop as my mother lost her faculties one by one.

Some days I had a screaming newborn, a two-year-old doing potty training while my mother needed me to help her tie her shoes. She desperately needed my help and could not understand that I had two young children to care for.

Since the beginning of this year, her condition has deteriorated rapidly. In February she still went to the market with her friends every Wednesday; now she is in healthcare.

Losing your mother to dementia and becoming a mother at the same time is so cruel and unfair. You can’t explain it to someone who hasn’t experienced it. I always expected to learn so much from her and rely on her for support. Now I feel adrift, alone.

Before my mother was diagnosed, I suffered from sleepless nights and endless questions about raising children. Now I still have those worries, while also mourning everything I lost because of her condition. her wisdom, laughter, home cooked meals, how she soothed my worries with a hug.

I am constantly torn between the joy of new beginnings while mourning the loss of my mother as I knew her. I slowly see her slipping away before my eyes as the disease takes over her brain cell by cell.

I wish my daughters had the opportunity to grow up with her in their lives. I wish she could read them and paint them. I wish her old self was still here today.

‘Before my mother’s diagnosis, I suffered from sleepless nights and endless questions about raising children. Now I still have those worries, while also mourning everything I lost because of her condition,” Kristy says of her mother Susan (pictured here in happier times)

She no longer lives with us because she requires full-time private care for every aspect of her life: feeding, bathing, changing. Visits are painful because it’s like watching someone die over and over again.

It is an ongoing, unresolved loss. With each milestone of decline, it’s like I’m opening a new chapter of my grief, mourning what she was able to do before.

She is a shell of her former vibrant self, bedridden and barely able to remember her own name, let alone mine or my daughters’. She seems lost in a fog that only thickens every day.

I miss calling her to ask stupid questions or just being able to hear her voice. I miss catching up over a cup of coffee and laughing about little things. When we visit, she recognizes us as people she loves, and we love her in return, but it’s unclear whether she makes the connection that I’m her daughter. And that kills me.

I was at the park recently and saw an older couple the same age as my parents playing on the swings with their grandchildren. I had to wear sunglasses to hide my tears.

As corny as it sounds, dementia teaches you that you only really know what you have when it’s gone. I went to therapy and started painting and drawing to cope with my grief. I use my artistic side as comfort, just like my mother always did. It makes me feel closer to her. Now I also share my work with others.

As anyone with a family member with dementia will tell you, you catch glimpses every now and then of the person they once were. It is always fleetingly short: a smile, the name of an old friend, a reference to a long-forgotten memory.

It’s really wonderful to know she’s still here.

I don’t know how much longer we’ll be with her, I’m guessing a year or less. I hope it doesn’t go too much further. It’s so hard to see her like this.

She used to be such a wonderfully lively, bubbly, fun person. Now she barely talks.

We are already mourning her death. When she dies, it will be a strange feeling because they have all experienced waves of grief over the past four years.

I’m not sure how much more I can handle.

• As told to Carina Stathis