I sat at the dining room table while my mother unloaded the dishwasher and noticed she was putting the kitchenware away in the wrong spots. Plates were on top of bowls in the cabinet, teaspoons were combined with tablespoons and small forks were with larger forks.
It was unusual behaviour because my mum Susan, who is now 63, was borderline OCD and very particular about order. I brought it up with her and she snapped: ‘I’m so tired of worrying that much about everything. I don’t care anymore.’
There was more. My husband and I lived with my parents at their home in Sydney 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 all she could see were the headlights rather than the road in front of her. She also would misjudge distances between things, often knocking over glasses of wine at the dinner table.
Ever since my brother and I were young, we would poke fun at mum for being the patsy of the family – it was always good-natured, but now she was starting to get upset at our ribbing and would run into her bedroom in tears, slamming the door behind her. I remember thinking how strange it was. Once, when I asked if there was something else bothering her, she answered: ‘Everyone picks on me.’
I told her I was booking an appointment to see the GP, which she agreed to. She was given a cognitive test: the first task involved counting back from 100 in intervals of seven, and the second involved drawing a clock. She looked over to me and asked, ‘Is 12 at the top?’ I said I couldn’t help her.
Mum was an incredibly artistic person; she loved to draw, paint and was very talented. To see her struggle to draw a circle in the doctor’s office was alarming. A few more questions followed but it didn’t make a difference; she failed the test.
I thought to myself, ‘It’s not possible – my mum is only 59.’
Kristy Adler, seen at her graduation, noticed something was wrong with her mother Susan, right, while watching her unload the dishwasher. She was later diagnosed with dementia
Susan, now 63, lives in a care facility after her condition deteriorated rapidly this year. Kristy, pictured with her mother and infant daughter, doubts her mum will live to see another year
After the cognitive test, dad took her to see a neurologist for a brain scan. It wasn’t good news.
My mother wasn’t yet 60 but had a brain of an 80-year-old, the specialist said. The diagnosis was early onset Alzheimer’s disease – the label they give people suffering from the disease before the age of 65.
I had researched Alzheimer’s. It’s often caused by a genetic mutation – but we don’t have any family history of this disease on my mother’s side. It was a huge question mark and I needed a second opinion.
I watched her process the grief before my eyes – anger, disbelief – before sinking in her chair, defeated.
There was one silver lining during this awful time. That year, 2020, I found out I was pregnant and my parents wept tears of joy when I shared the news with them.
The birth of my first daughter, Greta, was a great distraction for my mum as she came to terms with her diagnosis and, for a time, helped to lift the fog of her depression.
While they developed an amazing bond, I couldn’t leave my mum and baby together alone. I just couldn’t with her deteriorating condition and forgetfulness.
I could see the love in her eyes, but watching 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 mum’s condition, I couldn’t shake the feeling in the back of my mind that something wasn’t quite right with mum’s diagnosis.
A doctor told Susan she had ‘the brain of an 80-year-old’ at 59 and gave her a diagnosis of early onset Alzheimer’s. A second opinion later found she actually had a rare form of the disease known as posterior cortical atrophy
Four months later I took mum to the Brain and Mind Centre at Sydney University to meet with a geriatrician who confirmed my suspicions.
Her actual diagnosis was posterior cortical atrophy, a different form of Alzheimer’s disease that causes loss of cells at the back of the brain.
With this form of dementia, the first thing that’s impacted is a person’s visual awareness – which lined up with what my mother had said about her poor eyesight while driving.
The doctor was unable to give an exact prognosis – they said mum could die in five years or 20. But as I write this four years later, mum is living at a care facility and is unable to move. The five-year estimation was probably spot on.
We had another big life change in 2022 when I fell pregnant with my second child. My husband and I needed more space, so in June that year we bought my parents’ house and all lived together for 18 months. It was a challenging time, but looking back I’m so grateful I had that time with mum.
After the birth, my husband went back to work and I was at home looking after my two daughters, as well as my mother. It’s hard to describe how bittersweet it was to watch my girls grow and develop while my mother lost her faculties one by one.
Some days I would have a screaming newborn, a two-year-old who was toilet training while mum needed me to help her tie her shoes. She desperately needed my assistance and couldn’t comprehend I had two young children to look after.
Since the start of the year her condition has declined rapidly. In February she was still going to the markets every Wednesday with her friends; now she is in care.
Losing your mum to dementia while also becoming a mother is so cruel and unfair. You can’t explain it to someone who hasn’t gone through it. I had always expected to learn so much from her and rely on her for support. Now I feel adrift, alone.
Before mum’s diagnosis, I struggled with sleepless nights and the endless questions about raising children. Now I still have those worries, while also grieving all the things I’ve lost due to her condition – her wisdom, laughter, home-cooked meals, how she used to soothe my concerns with a hug.
I’m constantly torn between the joy of new beginnings while mourning the loss of my mum as I knew her. Slowly I watch her slip away before my eyes as the disease takes over her brain one cell at a time.
I wish my daughters had the chance to grow up with her in their lives. I wish she could read to them and paint pictures. I wish her old self were still here today.
‘Before mum’s diagnosis, I struggled with sleepless nights and the endless questions about raising children. Now I still have those worries, while also grieving all the things I’ve lost due to her condition,’ Kristy says of her mother Susan (pictured here in happier times)
She no longer lives with us because she needs full-time private care for every aspect of her life – feeding, bathing, getting changed. Visits are painful because it’s like watching someone die over and over again.
It’s continuous, unresolved loss. With each milestone of decline it’s like opening a new chapter of my grief as I mourn what she could 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 grows thicker every day.
I miss calling her to ask silly questions or simply being able to hear her voice. I miss catching up over coffee and laughing about little things. When we visit, she recognises 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 with their grandchildren on the swings. I had to wear sunglasses to hide my tears.
As trite as it sounds, what dementia teaches you is that truly don’t know what you have until it’s gone. I’ve gone to therapy and have turned to painting and drawing to process my grief – using my artistic side for comfort just like my mother used to. It makes me feel closer to her. Now I share my work with others too.
As anyone who has a relative with dementia will tell you, every so often you will catch a glimpse of the person they used to be. It’s always vanishingly brief – a laugh, the name of an old friend, a reference to a long-forgotten memory.
It’s really beautiful to know she’s still in there.
I don’t know how long we have left with her – I assume a year or less. I hope it’s not too much beyond that. It’s so hard seeing her that way.
She was such a wonderfully vibrant, bubbly, fun person before. Now she barely speaks.
We’re already mourning her death in life. When she dies it will be a strange feeling because have all already been through waves of grief for the last four years.
I’m not sure how much more I can take.
- As told to Carina Stathis
