I’m a carer for my mum who is living with dementia. Mum was officially diagnosed in 2012 with Alzheimer’s disease.
It took a long time to arrive at that diagnosis, over 2 years of fighting, going back and forth with mum, protesting, and not wanting to go. Fighting with the family to get them to see the value of having mum tested.
Dementia isn’t talked about in our community, most people hide it and don’t speak about it, even close family members tried to stop me from taking my mum to a memory clinic for diagnosis.
They tried to scare her into thinking she was going to the local mental asylum.
Unfortunately, due to budget cuts, the memory clinic had been moved from the central hospital to a local psychiatric/mental health hospital.
Luckily mum agreed with me and went, but I only found out weeks later that she was terrified of being left there and being locked up.
My mother is a proud African Muslim, and she described dementia (we don’t actually have a word for it) as going back to a child-like state, I like to think of it in those simple terms.
Mum is in the mid-stages of Alzheimer’s, and her symptoms present mainly as fluctuating memory impairment, anxiety, repetitive behaviours and sleep disturbance.
Her condition is complicated by the fact that in 2018 she was diagnosed with a spinal condition, and despite one successful operation, she’s still unable to walk. I’m mum’s full-time carer.
I used to work part-time but gave up work after my mum sustained several falls.
I’m hoping sharing our story will help someone else going through this, especially those in Black, African, Minority, Ethnic (BAME) communities, and to know that you’re not alone in this journey.
We’re struggling but learning each day and we’ll share any practical tips and advice, and talk about the good days and the bad days
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