Time to talk: ‘Be open and tell them’

When his wife Jyoti was diagnosed with dementia nearly six years ago, Pratap Sanghrajka had never heard of the condition.

Fearing that other carers may be hiding their struggles, he implores them to share their situation with friends and family.

Always smiling

Pratap, 81, was born and brought up in Kenya before coming to England in 1959 for higher education. He married Jyoti in India in the mid-1960s and spent time both there and in the UK, settling in Cheshire in 1979 with their son and daughter.

Pratap was an accountant and office manager, while Jyoti briefly worked in a sewing factory but spent most of her time raising their family.

Jyoti, now 75, was fond of embroidery, gardening, literature and music, and could instantly recognise both Indian and western singers.

Known for her intelligence and excellent memory, Jyoti followed Jainism, a religion that promotes non-violence. Pratap describes her as a family-orientated person who loved children and being around people.

‘She was full of life, always smiling,’ says Pratap. ‘She was a very caring person who would keep giving without any expectation.’

It was back in 2012 that the family began to notice changes in Jyoti’s behaviour. She started to make the same meal regularly during the week, rather than her usual variety. She was speaking about topics from many years ago that were unrelated to the current conversation, sometimes breaking into songs from her childhood.

There were also times when Jyoti seemed to experience hallucinations – on one occasion she believed there was a black cat in the room.

Jyoti didn’t acknowledge that anything was wrong and refused to visit the doctor. Pratap eventually managed to take her, which led to a diagnosis of dementia – following a brain scan and blood test – in April 2013. 

‘I never thought she would have a disease,’ says Pratap, who hadn’t been aware of dementia. ‘After the diagnosis I started to know what it is and why it is.’

Feeling helpless

Jyoti, who remained adamant that she was fine, developed unusual habits, including picking up and eating food off the floor, putting soap in her mouth, and placing items from shop shelves into her pockets. She also lost her appetite and later would only eat sweet dishes.

‘She never previously lost her temper, but if the family told her to eat she would get angry and start shaking,’ says Pratap.

‘Things were changing and it was extremely difficult looking after her on my own,’ says Pratap.

Jyoti’s mobility also decreased and she was having continence problems.

‘Things were changing and it was extremely difficult looking after her on my own,’ says Pratap. ‘I had to look after my own health as well and everything was accumulating. I tried to do my best but I was feeling helpless.’

Pratap, who is hard of hearing, was exhausted, losing weight and becoming depressed. His brother Bharat insisted that he move down to Luton to be closer to him and his wife Prafulla, which Pratap did in early 2015.

Pratap was keen to look after Jyoti at home, but the family eventually convinced him that she should move into residential care the following year.

‘They said what would happen if she falls or goes out in the night and you don’t hear?’ he recalls. ‘So looking at the worst case scenario, I decided to let her go into a care home. I still feel guilty, but I had no choice.’

Tell them

Pratap visits his wife every afternoon, taking her a fresh juice drink that he prepares. As far as he can tell, Jyoti has settled well enough into the care home, though he finds it difficult not having her around.

‘I’m thinking about her all the time,’ he says. ‘I think, “Why is it happening? What will happen now?”’

He credits his family, including his ‘heroes’ Bharat and Prafulla, with helping him during some very challenging times.

‘Their support has been so great at every stage, I can just pick up the phone,’ he says. ‘I’ve had family come from London and Cheshire at midnight to help.

‘I feel lucky in that respect, as I’ve heard about people who are suffering through hell as their family support is nil.’

Pratap feels that anyone caring for a person with dementia or living with the condition themselves is best off making their situation known to family and friends.

‘Be open and tell them, without any hesitation,’ he says. ‘I’m very worried to see people just hiding. If you hide it, you’ll keep suffering. But if you tell them, then some people will realise, understand and be helpful.’

Take action

Although Pratap’s advice applies to anyone, he has noticed a particular lack of dementia awareness among South Asian communities in the UK. He recalls attending a luncheon club where people were upset that Jyoti left most of her food, despite Pratap explaining her condition.

‘People don’t really understand, they just think she’s probably mad, full stop,’ he says. ‘This is one of the biggest issues in our community – they turn their face away.’

Pratap feels this is slowly changing. He and Prafulla attend the Guru Nanak, Ujala and Hindu Mandir Wellbeing Clubs in Luton, where people can socialise, enjoy a hot lunch and even do some exercise.

‘They ask how my wife is, how she’s getting on,’ he says. ‘When you tell people she’s in a care home, not talking or recognising us, they realise. They understand and appreciate that this illness is there.’

Pratap is keen to share his knowledge as much as he can.

‘I want people to know that if anything is happening to them or their family, they should shout loud or take action’, says Pratap.

‘If someone is keen to learn, then I will explain it to them,’ he says. ‘If they are worried about loss of memory, then I’ll discuss it with them.’

He has even shared his experiences on BBC regional TV.

‘There was no difficulty in talking about it. I’d rather speak out and spread awareness,’ he says. ‘I want people to know that if anything is happening to them or their family, they should shout loud or take action.’

Although Jyoti will always be his priority, Pratap also remains dedicated to raising awareness of dementia.

‘It could happen to anyone – you never know,’ he says. 

‘I just want to help people as far as I can.’