Versha Patel knows what it’s like to face criticism, stigma and a lack of understanding about dementia.
When her mum Sitaben was diagnosed with vascular dementia, Versha Patel dedicated herself to finding and providing the best support she could. However, some of her actions were misinterpreted by other people – including members of her own family – leaving her exposed to rumours and judgement.
With the support of her husband and others, Versha found the strength to not only ignore the criticism, but also offer to help others in a similar situation.
Born in Kenya in 1943, Sitaben Patel lived in India before getting married in her early 20s. She came to England with her husband Mohanbhai in 1964 and the couple later ran an off-licence in Bolton until his retirement in 1999.
‘They were the first Indian family in the area where they had the shop and it was quite difficult culturally,’ says Versha, a security manager who lives in Bolton. ‘There were a few racist attacks on the business.’
Sitaben, who also worked as a machinist, was always a supportive and very independent person.
‘She helped her siblings settle when they first moved to Bolton and cared for her mum and dad,’ says Versha.
‘Apparently Mum was the first Indian woman in the community to pass her driving test. She did the cash and carry while my dad stayed in the shop.’
Mohanbhai died not long after his retirement, and this had a huge impact on Sitaben. She turned her attention to helping raise Versha’s young daughter, Hannah.
‘Mum adored Hannah,’ says Versha. ‘I think looking after her granddaughter brought her back to life after Dad passed away.’
Sitaben would visit India almost every year, and it was on a trip in 2011 that Versha first noticed changes in her mother’s behaviour.
‘I stayed with her for two weeks and she was getting confused and experiencing some incontinence,’ says Versha. ‘She told me to take Hannah to visit a relative, but it was someone who had died years ago.’
Versha visited her GP back in England, who put together a plan of action for when Sitaben returned. This led to tests and a diagnosis of vascular dementia in May 2011.
‘I did a lot of research – I was on the internet every night,’ says Versha.
Versha immediately sought to discover more about the condition.
‘I did a lot of research – I was on the internet every night,’ she says. ‘I had to think long term, so I was looking at social care, assessments and carers.’
Versha, her brother Yash and Hannah all cared for Sitaben around their existing work and school commitments. The family also received good support from Sitaben’s younger brother and his wife.
Fight for care
Versha found it difficult to secure appropriate and good quality professional care for her mum.
‘I had an approved carer from the council but that was diabolical. They would turn up late and forget to give the medication,’ says Versha.
Sitaben was initially granted only half an hour of care a day to help take her medication, but Versha battled to get her more. She arranged for Sitaben to have replacement care, which highlighted just how much support her mum now required.
‘I'd complain about anything, but I wanted to make sure Mum got the best care,’ says Versha.
‘I had various meetings with social workers. My auntie and I eventually went to the head of social care,’ she says. ‘We had to fight to get 37 hours of care a week – something I felt Mum was entitled to because she’d worked really hard when she came to this country.’
Versha was fully prepared to take action if she felt that acceptable standards weren’t being met.
‘I'd complain about anything – some of the carers were probably quite shocked, but I wanted to make sure Mum got the best care.’
Versha eventually found a ‘fantastic’ domiciliary care agency that provided Gujarati-speaking carers to support Sitaben at home. Sitaben also began visiting a day centre three times a week.
Being a carer
Our publications provide advice on caring for a person with dementia.
Sitaben’s health was deteriorating and she was losing mobility, prompting Versha to request that family members phone ahead before visiting. However, some relatives took this as a sign that they were no longer welcome.
‘I had to tell people to ring before coming round, otherwise Mum would have seen them through the window, get up and risk hurting herself. But some family members didn't understand,’ says Versha.
A few relatives also reacted badly to Sitaben having replacement care.
‘People started spreading rumours that I wasn’t looking after Mum properly and that I was going to steal her money and house,’ says Versha.
‘I felt bullied by family and community members. I’d take Mum to festivals and weddings, to try and have a normal life, but it was very difficult. I felt I was being watched.’
Versha married Manish in 2013, and he immediately became a great source of support, along with her brother Yash and Hannah.
‘Some people wouldn't want to come into a marriage knowing their mother-in-law was ill, but he was very committed to looking after Mum,’ she says.
‘He gave me the strength to not listen to others.’
Sitaben enjoyed being at home, watching Indian TV channels and EastEnders. The family also held religious ceremonies and birthday celebrations in the house. However, as time went by she became even less mobile and began losing her speech.
‘We'd take her out as much as we could, but she was deteriorating,’ says Versha. ‘I started accepting that Mum was going to die.
‘I made a big fuss of her 75th birthday in April, because I felt something was going to happen.’
Sitaben died in July 2018, aged 75.
‘We had a 13-day mourning period, with the funeral in between,’ says Versha. ‘It was a very peaceful send-off but also a very difficult time.’
Versha wants there to be greater understanding about dementia and its impact on people’s lives, especially among Indian communities.
‘There needs to be more awareness of this,’ she says. ‘People need to understand exactly what this is about.
‘I think Mum felt isolated but people didn’t visit and the community didn’t really help. Local community figures need to come and see exactly what it’s like.’
‘I think I am now ready to give myself to others who are going through what I've been through,’ says Versha.
Versha has started to support other carers who are facing similar challenges.
‘I think I am now ready to give myself to others who are going through what I've been through,’ she says. ‘I’ve got advice on how to keep on at social services, and how to hold your head up and deal with people gossiping.
‘I also feel it’s very important to accept when someone is in their final stages – that helped me become stronger.’
Now able to look beyond what others may say or think, Versha takes comfort from knowing that she did everything possible for her Mum, including at the end.
‘We gave her the best life we could,’ she says.