She was officially diagnosed in 2012, after a long period of going back and forth, trying to get answers, and trying to get people around us to understand what was happening. Dementia wasn’t something people spoke about openly in our community, and even within our own family there was resistance to getting a diagnosis.

My mum was a proud African Muslim woman. She described dementia as going back to a child-like state. I understood what she meant, but living it day to day showed me it was much more than that. It was memory, anxiety, repetition, sleep, and so many other changes.

Over time, her condition became more complex. In 2018 she was diagnosed with a spinal condition, and despite surgery, she lost her mobility. Being her full-time caregiver became harder when she stopped walking.

This site started during those years. At the time, I was sharing what we were living through in real time.

Now, it also holds what came after.

After my mum died, I found myself trying to understand what caregiving had taken, what it had given, and what life looks like when it ends. That part isn’t talked about enough either.

DementiaWho is where I share both sides of that experience.

The practical parts of caregiving. The things that helped day to day. The moments that didn’t go to plan. And the reality of grief, and life after caring.

I hope sharing this helps someone else going through caregiving or life after, especially within Black, African, and minority communities, and reminds you that you’re not the only one navigating this. 

Thanks for reading