Looking back on the challenges of caring for someone with dementia

Kash Khunkhuna, in Derby, remembers her father-in-law as ‘a man of warmth’.

‘You’d hear his voice or laugh before you even entered the room,’ she says.

His garden was his pride and joy. I now totally understand why he loved it so much because you can just switch off and appreciate a bit of time out.

Although Gurdev Singh was her father-in-law, Kash called him Dad, while others knew him as Dave.

She describes him as a workaholic who loved gardening, music and old Indian films. 

‘A lot of people came to the East Midlands to do foundry work for a company called Qualcast,’ says Kash. 

‘Dad arrived from India in 1963 and started at the foundry literally the day after.

He wanted to do well and provide for his family, both here and back home.

Frustrated with tasks 

Dave was diagnosed with Alzheimer’s in 2017. Kash’s family, including her husband, four children and mother-in-law, noticed Dave becoming frustrated with everyday tasks after he retired. 

‘We’ve always lived together,’ says Kash. ‘I got married in April 2000 and Dad opted for early retirement in October. 

Years later, we noticed he was getting angry and frustrated. Simple jobs were not simple jobs anymore. He became forgetful and no longer took pride in things.

In 2014, after a heart bypass, Dave’s symptoms worsened. 

‘Dad became quite insular and would shut himself off from everyone,’ Kash says. 

‘Dad was very good at masking, so it was very difficult to explain to GPs that this was not the norm, and it took several years to get a diagnosis.’

Caring as a family

The family were soon juggling caring with their busy lives.

Previously, Dave was able to make meals and do everyday tasks for himself, but this gradually stopped. 

‘Prompting him to do things was the main thing at the start,’ Kash says. ‘We couldn’t understand what the problem was. 

But now I can fully understand that making a sandwich might be simple for me, but not for somebody who has Alzheimer’s.

‘Caring was a family affair. My husband did as much of Dad’s personal care as he could.

'My son, who was nine at the time, would quite happily help, and my mother-in-law is very practical, so she was always doing something too.’ 

Homecare visits for Dave were paused during the first national lockdown in March 2020, increasing the family’s caring responsibilities. 

‘The door shut on everyone,’ Kash says. 

This was difficult for Dave, who enjoyed socialising, and his dementia progressed rapidly. 

‘It wasn’t easy to have telephone conversations because Dad was non-verbal. Before, he just enjoyed watching and being present.’ 

Coping as a carer 

Lockdown was demanding for Kash, who works for an education trust. 

‘I project managed all of the trust’s websites and, when lockdown happened, everything went online,’ she explains.

I was working till midnight or one o’clock every night. I don’t know what kind of mode I was in but, in the moment, you just want to care for the person and that’s it.

Feelings of guilt were ever present, but Kash says having a pragmatic mindset helped. 

‘I think there comes a point where you just can’t do enough and you must think, “Okay, I’ve done the best I can,”’ she says. 

‘Dad was in his best, best place because he was fed, he was warm and he woke up with a smile on his face every day.

‘We’re still grateful for that quality time as a family which we wouldn’t have got without lockdown, because we would have continued going to work and school.’ 

Peer support 

Online spaces like our Dementia Support Forum were a key source of support for Kash. She says,

I don’t think I had any time to do anything else, but if there was something I thought wasn’t right, I’d log on.

Podcasts and reading about people affected by dementia – like Davina McCall – were also a comfort. 

When Dave died in November 2020, it was difficult. 

‘It changed the dynamics in the family,’ Kash says, ‘Because when you walked into the house, Dad would be the first one to smile and say hello. 

Even if he didn’t speak, he’d be with you all day in the kitchen – the family hub.

Need for more 

Kash says dementia is not openly discussed by her family’s Indian community. 

‘Our community still has shutters down,’ she says, ‘There’s an expectation that you deal with things within your own household with a stiff upper lip and don’t moan. 

We’re not sharing enough, to the point where people aren’t picking up the early signs of dementia.

Kash wants more awareness about dementia and the need for culturally-appropriate care.

She believes care organisations need to consider a lot more than language. 

‘We got linked to an Asian care organisation simply because we speak Punjabi,’ Kash says. 

‘I don’t think it’s always appropriate – as a carer, you don’t just need to speak the language, you need to have the training and understanding.’

Sharing her story 

Now Kash hopes sharing her experiences will make a difference. 

‘I’ve been sharing my story and I’ve been approached by family members and friends who are going through it,’ she says. 

‘It’s a small thing, but hopefully it will make people more aware of how we coped as a family. 

Some can cope with caring, some can’t. Caring is not easy.