Dementia Support Line
Real stories
Fighting for culturally appropriate care in the pandemic
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 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.
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.
Stand with those who’ve been worst hit by the pandemic
As restrictions ease, we’ll continue to push the Government to make a commitment of care and recovery to people affected by dementia.
Rabinder
saysHello Jag,
You have been wonderful to your Mother, as I say whenever I'm asked about caring for my Father, "He cared for me with live and tenderness when I was a young child, now I'm grown and he needs my help, I am happy to repay the favour - the bond between us is strong.
You are an amazing Daughter, keep up the great care.
Raj Gupta
saysHi jag ji
It is so inspiring to hear about your situation and as somebody from Asian background I'm so chuffed of learning about your experience as a carer I totally understand and that there aren't many culture appropriate services in the community I'm a retired social worker and now working with a Community Hub . we are charity focusing on raising awareness of issues around the needs of south Asian community. we run a day care centre. We are in the process of becoming a dementia friendly daycare facilities. We have been funded to raise awareness of dementia in the south Asian community . This is supported by race equality Foundation which has now motivated us to become more dementia friendly. I think it is important in this respect how to put our own house in to order around issues of shame and guilt. then start tackling other inequalities that exists in the society we need to work towards meeting the needs of all our Communities collectively together we can achieve this .many
thanks for for sharing your story this has now further motivated me to keep working in improving services at Community Hub
regards
Marie
saysMy heart goes out to you Jag. It must be exhausting to have to fight so hard to get the basic support your mum should have. She has raised wonderful daughters who have her best interests at heart. At least you will know you have done everything humanly possible for your mum when she needed you. It shouldn’t be this hard though to get the right support people. I hope you can take time for you in all this. Take care Marie x
John
saysHi there jag, it goes without saying your love and care that you give your mother is just outstanding. As each new day comes along it brings another challenge, and yes the system is that. 12 months ago I was diognosed with early stages of the condition. I was finished by the company of whom I had worked for for over 12 years, with 3 months pay. I felt so lost at the age of 64 no chance of getting a job as a chef of which I had done from leaving school at 15. So I am advised to claim for P.IP I am informed there is nothing they can give me so now I am living off some money I put away for when I retire. The club of which I was put in touch with by my adviser where I was having weekly zoom meetings as now finished. I will however Carry on as another door will open.
[email protected]
saysThank you for sharing your story Jag. My mum died in a nursing home last year from complications of Alzheimers . It was a hard decision to have her go in a home as she was bought up in an orphanage and she didn't want to be institutionalized. However, my health was deteriorating as I battled for agency carers and tried to understand the trajectory of the disease. There was very little help in order to keep her at home (I lived 3500 miles away).
As you say it was a full time. job. Incidentally, the day my mum died, I decided that I would become a Grief Coach and after 18 months of training, I'll be qualified to support the loved ones who care for those who have alzheimers. I really appreciated your story as you have helped me to understand what it's like to be caring for a loved one during Covid especially as you have cultural needs as well.
Please know Jag, that your mum appreciates absolutely everything you are doing for her, as hard as it is to navigate the needs for a parent, it is a special time. Please ensure you care for yourself so you can continue to care and support your mum. Love to you, you're very special.
Caroline May
saysIt was heartbreaking to read your story,so what would be your number one priority for me to write to my MP and make him aware
A Byles
saysI know exactly how you feel Jag as I have been caring for my wife since 2015 with little help, only one agency have shown support.
Lockdown was and is the worst time of my life , caring for my wife on my own and I don't know about your mother but my wife sensed something was wrong but could not understand what Covid 19 was which lead to a steeper decline in her condition.
Karyn
saysThis 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 💕
Susie Taylor
saysHello 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
ian shaw
saysLoads 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
Ruth
saysJag, 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
Fiona
saysHeartbreaking 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
Charanjeet
saysJag 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
Aziz
saysSuch 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.
Paul Cummings
saysI 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.