Ricky’s gran has lived next door to his parents since before he was born and was the family matriarch. They used to watch game shows together, and she taught him Punjabi. She often hosted family get-togethers with lots of food. She looked after me and was a massive influence on him growing up, his parents didn’t need to worry about childcare when they were at work as Ricky’s Gran always cared for him. Ricky has always been close to his Gran, and she has played a pivotal role in raising him and helping him to become the man he is today.
Here’s his exclusive interview with Asian Voice:
What were some early signs or symptoms that made you realize something was wrong with your gran?
Gran was becoming forgetful and mixing up people’s names, but as she was in her early 80s, we just put it down to her getting older. Over time, Gran’s condition worsened. She was forgetting how to do everyday tasks and neglecting her appearance, and I realised that something was wrong and it could not just be a case of getting older. Her personality was changing, everything that made her unique was slowly eroding away and her demeanour was declining.
Can you elaborate on the challenges your family faced in accessing appropriate treatment and support for your gran's condition?
There needs to be more access to Punjabi-speaking carers, we struggled for a long time to find someone suitable for my Gran who could converse in Punjabi with her. We searched all the websites, asked the local council, and explored the local community and it was so tough to find anyone.
Gran’s mother tongue is Punjabi and often doctors at the memory clinic or other healthcare professionals would communicate in English and we would have to translate it makes things more difficult. Often some of the memory testing questions asked related to English history and things that my Gran would not have known even when she was fully healthy.
I think there have been definite strides in raising awareness of dementia in the Punjabi community compared to say just 5 years ago and I think future generations will be much more aware, but there is still a long way to go. It is not talked about enough and there isn’t even a Punjabi word for ‘dementia’. It would be great to see dementia portrayed in Punjabi TV series or films, it is such a complicated condition and so much more than just memory loss which is most people’s perception.
Could you describe the emotional struggle you face in balancing your responsibilities while still trying to maintain a connection with your gran?
It is heartbreaking to watch a loved one become a shell of who they once were and it is tough to understand and digest what is happening. You are grieving for them while they are still alive. The person you knew is gone and you are now building a new relationship. It takes a massive emotional toll on you, but you have to remember that as hard as it is for you – imagine what your loved one suffering from dementia is going through, as they decline and understand less and less of the world they are living in.
To me, one of the greatest privileges in life is being able to take care of those who cared for us, and we are all committed to making Gran feel as comfortable and happy as possible. Just hugging her or stroking her arm shows her that she is still the person we all love, and I cherish every moment I spend with her.
What prompted you to reach out to Dementia UK's Helpline for support, and how has their assistance benefited you and your family?
I wanted to arm myself with as much information as possible to be in the best position to help my Gran. I researched thoroughly online and even took and passed an online Diploma Course on Dementia to improve my knowledge and understanding. Dementia UK kept coming up in my research and I was interested to learn about the amazing work the Admiral Nurses were providing. They offer invaluable support, both physically and emotionally and I have rung them on several occasions for advice. They have offered practical support like suggesting things like colouring books together and listening to music. But more importantly, the best advice was to stop correcting her if she got things wrong to avoid unnecessary agitation and to take things one day at a time. What works one day, may not work the next day and it is important to not take anything personally and just to do your best to be there for your loved one and offer them all the love and support you can.
Can you tell us more about your involvement in Dementia UK's campaign "We live with dementia" and why you chose to share your story?
I was honoured and privileged to be part of Dementia UK’s national campaign. I am motivated and committed to spreading awareness of Dementia and I feel it is vital to keep getting information in the public domain, we need to get people talking more and more about their experiences. I wanted to share my story to hopefully reach out to people who are going through the same thing, I know personally that I felt better hearing other people’s stories – it is important for people not to feel they are suffering alone or feel isolated. I feel the videos and digital adverts that have been created have helped to drive the campaign forward, I have been contacted by many people that I have not spoken to for so long, who have seen these and have got them to start talking about the condition and their own experiences.
Lastly, how should British Asian families envision the future to navigate life with a relative battling this condition and advocate for dementia awareness and support?
I think there could be more information/talks/fundraising at local Gurdwara’s. It would be beneficial to try and spread awareness about this condition and try and make older generations understand what dementia is and the effects it can have on the individual and their families. Places of worship remain the cornerstone of many South Asian communities and I believe it is the right place to start the discussion and try to bring some change to community perceptions on dementia and remove the stigma and false beliefs that have crept into society due to a lack of willingness to try and understand the condition.
