By Seda Sevencan
ISTANBUL (AA) – Fatma Mustu does not have any children. But when others around her speak about their kids, she always says she has a child.
That child, in truth, is her mother – one of the millions of people around the world with dementia caused by Alzheimer’s disease.
“She acts like a child. She can watch television alone, but she wants someone there, she doesn’t want to be alone. She wants someone to be with her,” Mustu told Anadolu in a conversation ahead of World Alzheimer’s Day, observed annually on Sept. 21.
“She avoids water. She forgets to wash her hands in the mornings. Getting her to take a bath is tough.”
Around the globe, more than 55 million people have dementia, and every year, there are nearly 10 million new cases, figures from the World Health Organization (WHO) show.
Alzheimer’s is the most common form of dementia and may contribute to 60-70% of all cases, according to the UN health agency.
Alzheimer’s risk increases as people get older, especially over the age of 65.
Mustu’s mom was diagnosed when she was 80, but the signs were there much earlier.
“In 2016, there was the slowdown in walking speed, urinary incontinence, and she started forgetting things,” she said.
“We put it down to forgetfulness, to aging, but then decided to see a neurosurgeon.”
By 2020-2021, they could see the full impact of the disease.
“It’s a slow and sneaky disease. It took time for us to accept and understand it because it was something new for us,” said Mustu.
Taking care of her mother has become increasingly challenging as she regresses into a more childlike mental state.
“I haven’t worked in five years since I returned from abroad. I don’t have a personal life anymore, it’s gone,” she said, narrating how the process has been draining both physically and emotionally.
It has also taken a toll on Mustu’s own mental health and she has been seeing a professional for support.
“I can’t look at old photos because when I do, I see someone completely different. She used to be so happy, full of life, and loved us a lot. But now, sometimes, it’s like she sees us as an enemy,” she said.
“If your parents are alive, cherish the good days because these moments don’t come back. This is a terrible, cursed disease.”
Another worry for Mustu and her siblings is the genetic factor, since their grandmother also had Alzheimer’s.
“What doctors told us and what we read is that it might be genetic. So, my siblings and I, God forbid, might end up like that. I hope not,” she said.
- Fear of being forgotten
Sisters Melek and Kezban Cankir have a similar story, one that began in 2015 when their mother, 81 at the time, was diagnosed with Alzheimer’s.
Their mom is 89 today and they have been by her side through a time that has been challenging to say the least.
There were some initial signs, like the time when she placed an electric teapot and coffee pot on the stove and turned it on.
Then a more worrying pattern emerged as she started forgetting to have her meals.
“She also started asking the same things again and again, just like a kid learning to speak,” said Kezban.
The family sought medical help and their fears were confirmed – their mom was in the early stages of dementia.
Today, there are times when she recognizes her children, but also others when she does not.
“There are fluctuations,” she said, adding that they hope she would not forget them.
Losing their father seemed to make their mother’s condition worse, particularly since they were really close.
“You feel helpless. You are so helpless … Children become adults and adults become children,” they said.
However, the sisters explained that experts they have spoken to stressed that they should not treat her like a child.
They too reached out for support, recognizing that Alzheimer’s is a battle that no family should fight alone, and that seeking psychological support is essential for both the patient and the caregivers.
Their mother’s changing needs meant they had to change their home too. They put child locks on windows, added handrails to help her move around, and made the bathroom more accessible. They have even removed rugs to prevent accidental falls.
Their advice to others caring for people with Alzheimer’s is to inform neighbors, local shopkeepers and community members about their loved one’s condition.
“Because you never know what such patients will do and when. The moment you turn your back, they can leave,” said Kezban.
One thing that they have found comforts their mother is knitting.
“We always make her knit,” they said.
She has knitted blankets and other things for her grandchildren, their spouses and friends – all tokens of a mother’s lasting love.