Mum was born in Jamaica in the late 1930s and lived there until she was 20 years old. She had sewing lessons when she was younger and developed her skills to become an incredible seamstress.
Mum could make absolutely anything – hats, coats, skirts, blouses, trousers – you name it, she could make it. She used to cut free hand and didn’t need a pattern; she was exceptionally talented.
Mum taught me to cook, sew, knit and crochet. I learned so much from her. It’s nice that her knowledge has been passed down through the generations. I’ve even made wedding dresses for friends and family.
Mum was part of the Windrush generation
Mum and Dad met in Jamaica and got married when Mum was 20. They were part of the Windrush generation and travelled to the UK by plane shortly after they got married.
Mum had to sell her sewing machine to pay for the ferry ticket. That was the first thing she bought when they arrived in the UK.
In later years, Mum and Dad used to travel the UK selling garments and had a stall on the local high street for as long as I can remember.
They still live in the house they bought back in the 1960s. It’s the house I grew up in and the only home I’ve ever known. They paid £3,000 for it, which back then was a lot of money!
We were referred to the memory clinic
In 2020, Mum was behaving strangely and aggressively towards Dad which was unusual. I contacted the GP and booked an appointment.
We were referred to the memory clinic where Mum was initially diagnosed with mild cognitive impairment. Mum has also had depression and anxiety for many years so she was prescribed medication for that too.
However, Mum hated taking tablets and things got worse in the following months. She started accusing Dad of stealing her belongings.
I got back in touch with the GP, and we were referred back to the memory clinic where Mum was diagnosed with Alzheimer’s disease.
I’ve read a lot about Alzheimer’s disease but nothing can prepare you for the day-to-day realities of dementia. Seeing things like Mum using toothpaste as face cream just breaks my heart.
It is draining caring for Mum as I work full-time. Dad also has health issues including diabetes and prostate cancer.
There is a level of shame around dementia
There is a lack of understanding and a stigma around dementia in Caribbean culture. In Mum and Dad’s culture and generation they were told to be strong and stoic and not to show their emotions.
It is also uncommon to talk about health issues, particularly dementia. People often don’t want to accept that dementia is in their family and there is a level of shame around it. This means that dementia often goes undiagnosed and families don’t access the support that is available to them.
When I look back now, I realise that signs of Mum’s dementia were there long before we sought a diagnosis. She was so used to bottling up her feelings that at first, I assumed that her symptoms were related to her mental health rather than dementia.
Dad is very open and understands a lot about dementia from meeting with our dementia specialist Admiral Nurse, Stacey. He talks to his friends about Mum’s dementia and shares his knowledge which is helping to educate his peers. He is also very honest about his own health issues which helps to break the cycle of shame.
There is more understanding about dementia in the Caribbean community in recent years as it is more widely spoken about.
Admiral Nurse Stacey with a colleague
I can’t remember life without our Admiral Nurse
I can’t remember life without Stacey. She has been so brilliant and makes Dad and I feel so at ease. She helps us put things into perspective and she lets us talk for as long as we need to.
It’s great that Dad and I can meet Stacey together as we often have a list of issues we need to speak about. It means we’re on the same page and we can remind each other of things that Stacey has said.
Stacey also helps us on a practical level and has given Dad and I tips to cope with Mum’s changing behaviour.
Mum has some memories of her time in Jamaica, but sometimes she remembers things differently. Stacey has told us to accept Mum’s reality and ‘go with it’ rather than trying to correct her all the time.
Stacey reminds me to take care of myself, which is often easy to forget but so important. She is a great emotional support and gives me the space to cry if I need to. She has told me about a local carers’ group which I am hoping to join.
I know I might need to give up work at some point and it’s reassuring to know that Stacey will be there for me when that time comes.
Dementia can happen to any of us, at any time, at any age. I hope that by being open and sharing my story it will help other families do the same.
*Names have been changed to protect anonymity.
The experiences of stigma in diverse communities
Admiral Nurse Mutsai Hove Bird writes about stigma and misconceptions around dementia in diverse communities