Jag

Jag’s story – ‘Managing mum’s care during the pandemic has been excruciating.’

Jag has been caring for her mum for eight years, fighting for culturally appropriate care. The pandemic has made their struggles even worse, denying her mum essential care and having a huge detrimental effect on Jag’s own wellbeing.

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 on her own, or drink 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 were 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 lockdown 

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

Jag and her mum

Supporting BAME communities 

The pandemic is affecting BAME communities in ways that cannot be ignored.

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.

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.

Our dementia advisers are here for you.

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 protect people ahead of the winter. 

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Dedicate a message to Government to make them address the reality of lockdown for people affected by dementia.  

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11 comments

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This is so heartbreaking Jag. Thank you for sharing it. I can empathise with your pain and I understand the love you have for your mum and the frustration of not getting the support that you need but I can not imagine going through this with all the other barriers that you have to face. You are doing wonderfully well. Sending you all lots of love and healing energy 💕

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Hello Jag and thank you for sharing this with me. This is a heartbreaking account of struggle for you to look after your Mum and it’s an important message to get out there. I’d love to catch up soon, I’ll message you separately. Take care and stay strong xx

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Loads of love jag, my mum is at the end after 10 plus years in a nursing home, also with language difficulties, though the love shown by the carers made up for that for us. Loads of love at a tough time my friend x

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Jag, what a wonderful and special daughter you are. I am so moved by your story. My Mum who is Punjabi, has Dementia with Lewy Bodies. My husband (White British and very culturally aware and sensitive) and I, moved in with my Mum 3 years ago. I gave up work a year ago. She's had agency Carers twice a day for 7 years and only Punjabi-speaking ones for the last 2. It was years of constant, uphill struggle to secure this. I've been in denial about the impact that Covid has had on us. I joked at the beginning that 'lockdown' didn't make any difference to me as I was already pretty much 'locked-down' anyway. Reading your story has made me realise that it has impacted us. Mum has deteriorated rapidly and is now experiencing acute paranoia so we are all sleep deprived because of nightly yelling, screaming and general disruption from hallucinations of potential murderers...it's hard to know where to turn from here as I'm aware that her care needs are changing and culturally, I'm nowhere near considering Residential Care for her, as I just can't see how her needs will be met. Thank you for your courage or, as we say "himmat", in sharing your story, it's helped me to know that I'm not alone.
Sending strength and love to you and your Mum x

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Heartbreaking for you Jag and having navigated the system to get my mother in law in to nursing care, I can empathise with you on the challenges, and I did not face the language considerations you did. We have been totally bereft at not being able to see our mum during the pandemic. Like yours she is bed bound 24 hrs a day and totally dependent on carers. She cannot enjoy the various activities put on for residents as she is not well enough to be lifted from bed.
In addition we lost my father in law last month. He was tormented by not being able to see his wife of 50 years who he used to visit 3 times a day - he simply died of a broken heart. The government need to improve the system to access care and support carers better

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Jag i am a carer for my mum-in-law and she has just been diagnosed with Mixed dimentia but like you say getting help is always is big struggle and i can understand what you must be going through. As you have already said some of us can challenge authorities but often wonder how many people fall at the first hurdle. You are doing great job Jag and your mum is very lucky to have such wonderful daughter. It takes lot of courage to tell your story and you are very strong and courgeous young lady. You will inspire others to come forWard to tell their story. Keep up this goid work and may your hard work pays off to bring about the changes needed for BAME communities. My heart and love goes out to you as a carer

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Such a terrible situation. Your mum
Is so lucky to have you as an advocate but our system of social care is broken - and things are even more difficult when people have different cultural needs.

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I know your pain Jag having looked after my dad with the same condition. At least I was able to get help from the local authority but COVID has made it impossible for you. My heart and love go out to you.

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Oh I read this with such sadness. You are up against all the emotions and traumas that dementia throws at you, and have the added complication of the language difficulty. How you are managing I don’t know, but all I do know is that your Mum has raised an amazing loving daughter and that you can only do your best in these awful times. All the best to you, and let’s hope this awful virus is defeated soon. X

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An impressive and heart-breaking contribution, Jag. You have been so strong in not only caring for your mum but in being prepared to tell your story.

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Wow such a real experience for many of us carers. I support you on every level which has been articulated very well. I too am a carer for two elderly parents both with mental and physical disabilities. Regrettably there are many of us out there. You're doing a great job x

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