Shahbanu adds: “At the time, I also noticed the change—it was hard not to—but I strongly believed that her brain was simply recovering after a period of prolonged and intense stress. And so I said to myself that once she’s rested, it will be fine. And, of course, deep down, I just didn’t want to acknowledge it as something serious. I didn’t want it to be anything like dementia because it just didn’t seem fair.”
Getting a dementia diagnosis
Like many, both siblings inevitably turned to Google, looking up the symptoms and finding out what they could online, often swapping articles they had found to justify their differing positions or try to convince the other. “Even though we disagreed, we still shared everything we read with one another. Because, ultimately, we both had the same aim. To understand and help our mother,” Aqib said.
This lack of clarity and mounting worry caused them to turn to their mum’s physician who referred them to a Memory Clinic where Shama took the Addenbrooke’s cognitive exam (ACE) in April 2022. All the points she lost were on the memory portion, giving her a score well below what would be expected from someone like her with a graduate degree. And it was that day that Shama was given a preliminary diagnosis of Alzheimer’s disease, which was later confirmed following additional scans and tests in May 2022.
Even during that month before the formal diagnosis, Aqib and Shahbanu knew that family life would never be the same again. They realized they needed someone they could talk to as soon as possible. “It was as if the bottom had fallen out of my world. The future that I had imagined had evaporated—it was replaced by a fairly unknown and frightening one,” Shahbanu recalls.