Real stories

Fighting for culturally appropriate care in the pandemic

Mum’s background

My mum was diagnosed with Alzheimer’s disease and vascular dementia four years ago, though she had symptoms long before that.

She’s lived on her own since Dad passed away in 2000, but she now needs 24-hour care. She can’t eat or drink on her own, or manage her personal care. She’s been completely bedridden for nearly a year.

Arranging care for Mum has been an uphill struggle. As her dementia has progressed, she has reverted to her native language, Punjabi.

The council was unable to help me source Punjabi-speaking carers, meaning her care was not culturally appropriate. I’ve had to find Punjabi-speaking carers myself and provide my own Punjabi language resources. I’ve struggled at every juncture.

The challenge of the coronavirus lockdown

Managing Mum’s care has been challenging enough over the years but the coronavirus pandemic made it excruciating.

Her main carer of three years wouldn’t visit because she was worried and confused and didn’t understand she was exempt from the lockdown.

I live 200 miles away, but my sister and I had to step up our visits to look after her three or four times a week.

The two other carers were new so I had to manage them every hour, which was exhausting. At first, we wore masks and gloves but this left Mum feeling like we didn’t want to be with her.

Mum also got chest sepsis during the lockdown and had to be hospitalised. It was a nightmare. She was traumatised and it was a distressing ordeal for me. It was evident that information was being lost in translation between professionals. It was awful not being with her and advocating for her.

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Supporting BAME communities 

The pandemic has affected BAME communities in ways that cannot be ignored.

The UK government didn’t put any measures in place to educate these communities about coronavirus. The council should have sent information out to the carers so they understood they were exempt from lockdown and could continue caring for Mum. It took me a long time to make them understand that.

The main carer finally agreed to resume work after three months. This has had a profound effect on Mum.

Anyone who knows dementia, knows that continuity is so important for her.

Stop overlooking the BAME communities and stop overlooking dementia.

Fighting for appropriate care in a broken system 

I had to give up work four years ago as advocating for mum, chasing and challenging the authorities, and managing the carers is a full-time job. I’m here to spend quality time with my mum, not chase the authorities to make them do their job. I’m able to articulate myself but I really despair for those people who fall at the first hurdle.

The council couldn’t help me. They couldn’t help me source any Punjabi-speaking carers. I was desperate. All I ever get from professionals is, ‘Put your mum in a home,’ but that can’t meet her religious, linguistic or other cultural needs. Mum is conscious of her surroundings and it would only fast-track her to the inevitable. And now with lockdown, everything is even worse.

Stress and grief are my everyday norm. I used to get pockets of time off – a gig or a night out, a bit of release once a month – but that’s all been taken away.

It’s such a broken system. The government mustn’t overlook the under-served communities and they must do more to support unpaid carers like myself. I should be making memories with Mum in these final stages of her life but instead I’m still struggling for support.

By raising awareness within BAME communities, I’m dealing with my grief.

I just want Mum’s end-stage to be met with dignity, peace, and as little pain as possible. I am sure that is what any government official would want for their mum too.

Take action to support Jag and her mum 

The impact of coronavirus has been shattering for people affected by dementia. Urgent action must be taken to better support them.