I sat at the dining room table while my mother unloaded the dishwasher and noticed that she was putting kitchen utensils in the wrong places. Plates were on top of bowls in the cabinet, teaspoons were combined with tablespoons and small forks with larger forks.
It was unusual behavior because my mother Susan, now 63, was borderline OCD and very particular about order. I mentioned it to her and she blurted out, ‘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 at their house in Sydney for a few months in 2020 while they renovated our bathroom.
At that point he lost confidence in the road and stopped driving at night because all he could see were the headlights instead of the road in front of him. He also misjudged the distances between things, and often knocked wine glasses on the table.
Since my brother and I were little, we made fun of Mom for being the scapegoat of the family; She was always in a good mood, but now she was starting to get angry at our jokes and ran to her room crying. closing the door behind her. I remember thinking how strange it was. Once, when I asked her if there was anything else that was bothering her, she replied, “Everyone picks on me.”
I told her I was making an appointment to see the GP, to which she agreed. They gave him a cognitive test: the first task was to count backwards from 100 in intervals of seven, and the second was to draw a clock. She looked at me and asked, ‘Is 12 at the top?’ I told her I couldn’t help her.
Mom was an incredibly artistic person; He loved to draw, paint and was very talented. Watching her struggle to draw a circle in the doctor’s office was alarming. A few more questions followed, but it made no difference; She didn’t pass the test.
I thought: “It’s not possible, my mother is only 59 years old.”
Kristy Adler, seen at her graduation, noticed something was wrong with her mother, Susan, while watching her unload the dishwasher. He was later diagnosed with dementia.
Susan, now 63, is living in a care facility after her condition deteriorated rapidly this year. Kristy, pictured with her mother and young daughter, doubts her mother will live another year.
After the cognitive test, dHe took her to see a neurologist for a brain scan. It wasn’t good news.
My mother was not yet 60 years old but she had the brain of an 80-year-old, said the specialist. The diagnosis was early-onset Alzheimer’s disease, the label given to people who suffer from the disease before age 65.
I had researched Alzheimer’s. It is often caused by a genetic mutation, but we have no family history of this disease on my mother’s side. It was a big question and I needed a second opinion.
I watched her process the pain before my eyes—anger, disbelief—before sinking into her chair, defeated.
There was a silver lining during this terrible time. That year, 2020, I found out that I was pregnant and my parents cried with joy when I shared the news with them.
The birth of my first daughter, Greta, was a great distraction for my mother as she came to terms with her diagnosis and, for a time, helped lift the fog of her depression.
Although they developed an incredible bond, I couldn’t leave my mother and baby alone. He simply could not cope with his condition of deterioration and oblivion.
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 discussed my mother’s condition, I couldn’t shake the feeling that something wasn’t quite right with my mother’s diagnosis.
A doctor told Susan she had “the brain of an 80-year-old” at 59 and diagnosed her with early-onset Alzheimer’s. A second opinion later found that he actually had a rare form of the disease known as posterior cortical atrophy.
Four months later I took my mother to the Brain and Mind Center at the University of Sydney to meet with a geriatrician who confirmed my suspicions.
His actual diagnosis was posterior cortical atrophy, a different form of Alzheimer’s disease that causes the loss of cells in the back of the brain.
With this form of dementia, the first thing that is affected is a person’s visual awareness, which was consistent with what my mother had said about her poor eyesight while driving.
The doctor couldn’t give an exact prognosis: they said Mom could die in five years or 20. But as I write this, four years later, Mom lives in a center of attention and cannot move. The five-year estimate was probably accurate.
We had another big life change in 2022 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 we all lived together for 18 months. It was a difficult time, but looking back I am so grateful to have had that time with Mom..
After the birth, my husband went back to work and I was at home taking care of my two daughters, as well as my mother.. It’s hard to describe how bittersweet it was to watch my daughters grow and develop while my mother lost her faculties one by one.
Some days I had a screaming newborn, a two-year-old who was potty training while Mom needed me to help her tie her shoes. He desperately needed my help and couldn’t understand that I had two small children to care for.
Since the beginning of the year his condition has deteriorated rapidly. In February she still went to the market every Wednesday with her friends; Now she is in care.
Losing your mother to dementia and becoming a mother at the same time is very cruel and unfair. You can’t explain it to someone who hasn’t been through it. I always hoped to learn a lot from her and have her support. Now I feel adrift, alone.
Before my mother’s diagnosis, I struggled with sleepless nights and endless questions about parenting. Now I still have those worries, while also mourning all the things I have lost due to his condition. His wisdom, laughter, home-cooked meals, how he calmed my worries with a hug.
I am constantly torn between the joy of a new beginning and at the same time grieving the loss of my mother as I knew her. I slowly watch her disappear before my eyes as the disease takes over her brain, one cell at a time.
I wish my daughters had the opportunity to grow up with her in their lives. I wish I could read to them and paint pictures. If only his old self was still here today.
‘Before my mother’s diagnosis, I struggled with sleepless nights and endless questions about parenting. Now I still have those worries, and at the same time I mourn all the things I lost because of her condition,” Kristy says of her mother Susan (pictured here in happier times).
He no longer lives with us because he needs full-time private care for all aspects of his life: feeding, bathing and changing. The visits are painful because it is like watching someone die over and over again.
It is an ongoing and unresolved loss. With each milestone of decline it is like opening a new chapter of my grief as I grieve for 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 grows thicker every day.
I miss calling her to ask her stupid questions or just being able to hear her voice. I miss catching up over coffee and laughing at little things. When we visit her, she recognizes us as people she loves and we love her back, but it’s not clear if she makes the connection that I am her daughter. And that kills me.
I was recently at the park 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 may seem, what dementia teaches you is that you really don’t know what you have until you lose it. I went to therapy and turned to painting and drawing to process my grief, using my artistic side to comfort myself just like my mother used to do. It makes me feel closer to her. Now I also share my work with others.
As anyone who has a family member with dementia will tell you, from time to time you will get a glimpse of the person they used to be. It’s always extremely brief: a laugh, the name of an old friend, a reference to a long-forgotten memory.
It’s really beautiful to know that she is still there.
I don’t know how much time we have left with her; I guess a year or less. I hope it’s not much more than that. It’s very difficult to see it that way.
I used to be a wonderfully vibrant, happy and fun person. Now he barely speaks.
We are already mourning his death in life. When she dies it will be a strange feeling because we have all gone through waves of grief over the last four years.
I’m not sure how much more I can take.
- As told to Carina Stathis
