‘Every day, every hour and every second with Mum is different’ Shobna Gulati
‘Auntie, aren’t you the funniest?’ the family would say to Mum in response to her dry humour and quick wit. And despite the slow onset of vascular dementia, that devilish twinkle is still in her eyes – most recently sharing a giggle at how handsome Rock Hudson was in his heyday.
Mum was definitely the matriarch of the family. And the community.
She brought me and my three siblings up, she helped me raise my son. In fact, she helped bring up a lot of the family where we grew up.
‘Who’s ironed the shirts? Who’s got the PE kit?’, Mum kept us all in check.
Looking back now the early changes were so marginal and so easy to put down to other things – tiredness, stress. You could always find an explanation.
We’ve always been close. Living around the corner to Mum meant she’s always been a major influence in my life. When I had to choose a +1 for red carpets events, it would always be Mum. We’d do things in the community, charity and social events and visits.
It’s not so easy for Mum to keep up any more these days and she prefers to stay at home.
The first warning signs
The first signs that something was wrong was when Mum’s normal character seemed to dial up a few notches. At first our arguments would seem different, lasting for days rather than hours. I’d anguish over what I’d done so wrong to upset her.
She’d get confused when out in the car, even though she’d lived in the area her whole life. I vividly remember one day Mum came to pick me up from the set of Coronation Street, which she knew so well. But she got lost for two hours trying to find me, with no mobile phone. Now, of course, she doesn’t drive and giving up that part of her independence was tough to negotiate in the beginning.
The past became so present for Mum. Rather than focusing on the practicalities of day-to-day life, she’d tell stories about her childhood that she’d never talked about before. Seeking comfort in those memories that she could still find and enjoy.
Mum is a headstrong lady and looking back, she covered the cracks for about three years before her diagnosis. None of us knew much about dementia before that. But when the diagnosis came, it was there in black and white: vascular dementia.
Then life started to change for us.
Every day is different
Today, Mum still loves singing in Hindi, watching her soap operas and murder mysteries, and hearing about the family and our lives. But every day, every hour, every second can be different.
Some days we laugh and laugh together, some days Mum just can’t find comfort in anything we try to offer. And every day we learn something new about how to help her.
Caring for mum is a family affair – split between me, my brother, one of my sisters and my son Akshay, with caring support from a family friend. There’s also great support from the local health authority and district nurses. Between us we’ve learnt the art of patience and negotiation, and the value of information.
There is so much stigma about dementia, particularly in South Asian communities. This weighs strongly on mum and to this day, she’s struggled to accept her diagnosis.
We watch mum trying, and failing, to come to terms with the idea of dementia. And that’s heartbreaking. Because it’s been less painful for her to shy away from the perceived stigma of the diagnosis than to share it, and that’s where things need to change for future generations.
Be brave and speak out
Vascular dementia has definitely made Mum more socially isolated, and more and more of today’s older generation is facing this future. It’s also isolating for carers, like me and my siblings.
In our community it’s normal for everyone to know everyone else’s business, it’s a very social affair. But when you’re struggling to cover cracks in normal life, it can also create a real social pressure.
Talking about dementia, and the value of research, is vital. It’s such an important way to break down these stigmas.
If we can talk about dementia and share experiences without judgement or taboo, we can create support systems and help people contribute for longer within society. We can also help people accept that they might be changing and adapt the world to make their lives easier.
Dementia is caused by diseases, there is no shame in that. Everyone is human and at some stage in our lives we’ll all get ill.
My hope for the future is that if my family has been brave enough to speak out about dementia, we might help others. And together, we’ll break down that stigma and support research into this debilitating disease.
That’s why Alzheimer’s Research UK’s Talk Dementia film, available in Hindi and Urdu, is such a fantastic resource for the wider British communities.
If you’re affected by dementia, please watch the film and read the facts about dementia. Take a moment to talk to those around you and see what happens.
I hope it opens doors for you and brings comfort.