Time to talk: ‘Be open and tell them’

Having received strong family support after his wife developed dementia, Pratap Sanghrajka advises others to be open about their needs.

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.’

Pratap Sanghrajka

Pratap wants people affected by dementia to be open with family and friends

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.’

Supporting and informing carers

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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.’

Pratap Sanghrajka with his sister-in-law Prafulla

Pratap has had great family support, including from his sister-in-law Prafulla

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.’

Dementia together magazine: Feb/Mar 19

Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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My husband was diagnosed two and a half years ago with alzheimers. He is still able to wash and dress himself and do little jobs around the house, but his short term memory is almost non existent. He constantly repeats the same questions and doesn’t remember conversations we have. I am at the moment having treatment for cancer and obviously not feeling very well. I am his main career and we don’t have a lot of help from anyone. My fear is that if I am not feeling well who is going to look after him. At the moment I am struggling.

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My mother in law has dementia and recently fell and broke her hip. She is now in hospital,frightened, disorientated and very angry and at times violent to staff and relatives. How are you to cope with this,visits end up with her and us getting extreamly upset. So do you visit less often in the hope she will be calmer or go each day and face her anger and bitterness. Her elderly husband thinks she will get better so there's the added stress of explaining to him this is not going to happen. Social services etc are involved but everything takes so long to sort out,it's all so very sad and stressful for all concerned .

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13

I enjoyed reading the gentlemans story , I'm looking for respite. at the moment my husband has Lewy Bodies and is very upset and aggressive towards other people who visit us to sort it out swearing and yelling them to leave and saying it not very nice ,I do need a break as I'm very irritable and tired the social worker said about full time care as he may be in late stages but I'm finding it very hard as I love and think I can still look after him a little longer ,he dose need with almost everything except eating which he eats very well ,and which home to choose

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12

My wife has dementia and we have a large family but we get plenty of will help but no help I do think that my family is in denial of their mum's condition .as her full-time carer I do get a feeling of bitterness towards them .

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12

I agree with Pratap that you should be open with family and friends. I have excellent support from my family, but unfortunately immediately after I told my wife's local friends that she had early onset Alzheimers, they avoided us both.

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