Real stories

I want more families to talk openly about dementia, especially in Asian communities

Suki has lived in Southampton her whole life, growing up there with three sisters. 

‘At one point, Mum and Dad moved just down the road from me,’ says Suki.

It wasn’t intentional, but ended up being essential later on so we could care for them.

Years later, she often passes her parents’ old home when out walking and the strong associations are still there. It’s hard to see the house renovated when so much from such an important time in her life happened there.

Personality changes 

Suki always liked being around her dad, Mehal, when she was a child. 

‘I used to follow my dad around everywhere,’ she says. ‘If he was in the garden, I was in the garden. If he was doing something to his car, I was under the car passing him tools.’ 

When he went to the gurdwara, I went with him.

Suki is still struck by the ways in which Mehal’s personality changed as his dementia progressed. 

‘He was 84 when he passed away in 2017,’ she says. ‘Normally, when I think about him, I think of dementia and how it changed him.

‘But when we used to describe Dad to people, we’d say he was a methodical man, always living by the rules. 

He worked on the railways, loved cars and religion was very important to him. 

‘He was hardworking and generous and would do anything for anyone. I think this is where I get it from, as myself and my children do charity work and fundraising, including Memory Walk.

‘Dad was always smartly dressed – never a hair out of place – but dementia reversed all of that.’ 

Noticing dementia symptoms

In around 2010, Suki noticed her dad behaving unusually. 

‘I noticed he wasn’t doing the same things he used to do,’ she says. ‘I didn’t really know about dementia at the time, and we thought he was just getting older.’ 

A change in his writing was especially alarming for her to see. 

‘Dad was known for his penmanship and people would ask him to sign certificates and write letters home to India,’ says Suki. 

‘If he had a pen in his hand, he was always writing. He had a stylish signature and would draw flowers. 

But one day I saw Dad scribbling and I knew this was not right.

Initially, Suki put these things to the back of her mind. However, a few months later she went on maternity leave and was around the house more often. 

‘Dad would leave the tap running and would walk out the house and then come back in, not knowing what he was doing,’ she says. 

‘He put his shoes in a silly place. He would always polish his shoes, so this was not like him. ‘I just thought, “OK, something’s wrong.”’ 
 

Dementia tests

Suki spoke to a GP and her dad had some memory tests. He was diagnosed with dementia but had trouble accepting the diagnosis. 

‘I was trying to help Dad, but he saw it as interfering and was angry at me for bringing healthcare professionals into his home to ask him questions,’ Suki says. 

His personality completely changed. He went from being quite a strict person, not one for sharing his emotions, to like a grandad figure to us.

‘He also started worrying more about things – when I had health problems and looked ill, he would notice and bring it up, which was not like him.’ 

Struggling to get support

Suki says her family were told it was too late to give Mehal medication to manage his condition. 

She also says they weren’t offered any help with his care or advice and had to push for assistance. 

We needed all the help we could get. Someone should have told us what we were entitled to. 

‘We were thinking, “Well what can we do?” Mum was also ill so couldn’t look after herself, let alone Dad. 

‘But between us, we rallied around and we took care of him. I don’t know how we managed it.’ 

Suki and her sisters became ‘sandwich carers’ – caring for their children and parents at the same time. 

Crisis point in care

Suki says it was hard to find the right care to help her dad live at home. 

‘We didn’t find out what was available until we really pushed. Even then, they kept changing the support at short notice – everything was so difficult,’ she says. 

‘We had a carer overnight who slept there for a few weeks. It was really difficult, as Dad would throw things and nearly set the house on fire.’ 

Then things reached a point of no return. ‘He threw something at the carer and they walked out, leaving me with him. He was then sectioned. 

‘When he was taken away and moved to a care home, we walked with him arm in arm along the driveway,’ she says. ‘Dad turned to me and said, “If you make me leave, I’m never coming back.” 

I will always remember that awful day. Even though I was trying to help, it felt like we were forcing him out of the house.

Difficult care home visits 

Mehal’s condition deteriorated at the care home and visiting was a difficult experience. 

‘We would go in every day to see him, even though we all had our careers, and young children to look after,’ she says. 

It was really heartbreaking. This is what people don’t understand – people don’t realise how emotionally upsetting it is. 

Being alone had always been hard for Mehal, who became distressed when his family had to leave. 

‘He liked being around people all the time,’ Suki says. ‘At the care home, we had to trick him that we weren’t going home without him. I still feel guilty and upset about it.’ 

Suki believes having someone who spoke Punjabi at the care home could have made life more comfortable for her dad. 

‘I used to be a translator,’ she says, ‘so I know that when people are stressed or ill, they find it easier to talk in their mother tongue.’ 

Advice to other people

Despite doing everything she could for her parents, Suki says she has been left with feelings of guilt. 

‘It was my duty to care for my parents – my dad who had dementia and my mum who had many health conditions. But I’m left with the feeling I could have done more,’ she says. 

My advice to other people who have a relative or friend with dementia would be to do everything you can and spend time with them. 

‘I got really upset when my dad didn’t know who I was. Every time I visited, he gave me a new name. The last one before he died was “Shakira”. 

‘They may have forgotten you, but you remember them! Talk to them and make new memories. 

‘You can’t make them better, but you can make them feel better. 

‘Don’t stop recalling their lives with them. Remember, you’re their memory.’ 

Remembering Dad at Memory Walk

Suki was always open about her dad’s dementia and wants others to be open too. 

‘We told everyone about Dad’s dementia – we never made excuses or hid him,’ she says. 

In the gurdwara, when he was having funeral prayers, we told everyone on the message board that he had had dementia.’ 

Suki thinks that families, especially in Asian communities, should share their experiences of dementia so others are more aware of it. 

‘More needs to be done so that dementia is seen as a condition, as people think it’s just getting old,’ she says. 

I wish we knew about Alzheimer’s Society when Dad was alive.

Since 2017, the whole family has taken part in Memory Walk. 

‘It’s not all about raising funds, it’s also about just being there and helping to raise awareness,’ says Suki. 

‘There must be lots of families with a relative with dementia, yet they don’t talk about it – it’s like this secret thing, especially among Asian families. 

‘I will never not talk about Dad and how dementia affected him and all of us.’