On Sunday 23rd April, I will be running the London Marathon.. in memory and deep love for an incredible human being, my grandmother, Pushpa Kumari Aggarwal aka Mama. My goal was to run, injury free whilst raising awareness of a disease that is increasingly affecting our ageing population. I have watched this marathon as a spectator for friends many times and its an experience to simply be there. To have the opportunity to participate in this 3 years after applying, has been a life saver to say the least, especially since Mama passed on late last year. Looking back at the earlier years of her diagnosis, I remember feeling helpless and anxious, knowing that one of the most gentle humans was losing a lifetime of memories to a disease which had no cure.

It was truly heart breaking to be a spectator in my Gran’s life when she most needed the most help. It became a mental torment for my nearest and dearest, not knowing whether what you were doing was enough or even the right thing. There are many reasons as to WHY people run the London Marathon. I chose to run in 2020 as a way to regain some control. I knew that whatever I did, was never going to change the reality of Mama, but maybe this would help initiate a conversation behind mental illnesses within the South Asian community. 

Coming from an Indian background, mental illnesses are commonly picked up a lot later, and even when it is diagnosed, families are left feeling very alone in this long journey.

According Alzheimers uk;

“Dementia is an umbrella term for a range of progressive conditions that affect the brain. There are over 200 subtypes of dementia, but the five most common types are Alzheimer’s disease, Vascular Dementia, Dementia with Lewy bodies, Frontotemporal Dementia and Mixed Dementia.”

Mama had Vascular dementia for almost 6 years, the second most common form of Dementia and is caused by problems in the supply of blood to the brain cells. The change in those years were fairly rapid. 

This tends to be commonly seen withIn South Asian and Afro Caribbean diaspora living in the UK, due to the high prevalence of stroke, diabetes & heart disease in those ethnic groups; all of which are part hereditary and part lifestyle. 

Although other types can affect many people a lot earlier on in life, age is the strongest risk factor for Vascular Dementia. A person's risk of developing the condition doubles approximately every five years over the age of 65. Those that have had a stroke, have diabetes or heart disease are twice as likely to develop Vascular Dementia. Like many people from that generation within the Indian community, Mama had both type 2 diabetes and hypertension for many years.

This disease has not only affected Mama but has had a huge impact on those around her. Many people have the misconception that Dementia is just a natural process of getting old… but take it from me, there is nothing natural about this disease. Forgetting whether you’ve eaten or not, so you eat two meals in a row, thinking you’re in somebody else’s home so you open the door at odd hours, the inability to control your bladder at times, the inability to say what you’re thinking and therefore getting frustrated with the person you’re talking to, as you think you’ve said things quite clearly.. None of this is natural.

The early identifiers for us were when my mum realised Mama had been storing her medication in various other containers, instead of in her weekly docet boxes, which equally shocked and confused Mama too when it came to light. Mama finally confessed she was struggling to get herself dressed in the morning, which eventually led to an appointment with her GP.

“Over time a person with Vascular Dementia is likely to develop further confusion or disorientation, and further problems with reasoning and communication. Memory loss, for example for recent events and names is likely to worsen. The person is likely to need more support with day-to-day activities such as cooking or cleaning.”

In the earlier years, we had to consistently explain to extended family and friends that Mama could not answer the phone anymore as she didn’t understand the concept of picking a telephone up, so a face to face conversation is best. Or that we need to know when they’re planning to come over so that we can help facilitate with opening the door, as she may want a midnight stroll later. And yes, we know she’s lost weight, we’re not starving her, she’s just losing her appetite. Nope, it’s not age it’s a disease.

In 2020, when I first wrote this page, Mama was starting to need more and more help. By then she had a carer visiting 4 times a day into her home. Often people with Dementia go back to their mother tongue and for Mama, this was Hindi Punjabi. As a result, it became increasingly difficult for her to communicate with carers that don’t speak her language. 

Each day was a battlefield for her, as her brain literally shrunk that little bit more. 

Vascular dementia also affected Mamas characteristics; she was more irritable, agitated and often didn’t  sleep well. In March 2020, when the world was closing down, I decided to move in with Mama for a period of time. Man do I wish I was back there with her dunking my Digestive biscuits into our third cup of chai for the day. It was the first time I saw what it was truly like for her during the nights. Each night, I would help her into bed, we’d sing a hymn together  (Hanuman Chalisa- its long!) and I’d head upstairs. And like clockwork, within an hour or so, I would hear her moving towards the sofa to ‘get some work done’, often in the dark, not understanding that it was the early hours of the morning. Despite it being difficult to observe, I knew she was comforted by my presence. I miss those times so much and feel incredibly grateful that I had spent that quality time with her, before things really headed south in 2021.

In 2021, Mama had a series of falls, which led her to being hospitalised. It was after these admissions did we see the drastic deterioration of the disease. Mama was unable move as freely now, which meant she required double the support with hoists, she was less communicative and her behaviour became erratic and aggressive.

I really want to raise people’s awareness of Dementia within South Asian community, to help those who are suffering, often in the dark, feel a little less lost. If there was a conversation about this, it may not have felt like we’re the only ones dealing with this. Based on the stats, there’s no way we are. 

Charities like Alzheimer’s society, give me hope, as they work tirelessly to find a cure; so that by the time my 9 year old niece and 7 year old nephew reach adulthood, they may not have to worry about one of their loved ones having to experience what we have.

I feel so lucky to be part of the generation of children whose grandparents came from the era that Mama belonged to. An era which survived partitions and moved countries (three times) for a better life; all whilst maintaining a sense of normality for their children and themselves. That normality being filled with a rich culture of traditions, foods and the love to welcome all with open arms into their homes. I feel proud to be celebrating a person who simply wanted her loved ones to be happy. She led by example and was the biggest kid on the block. She found me hilarious and encouraged my jokes with her side eyes and sudden outburst of silent laughter (the best type of laughter). 

Please sponsor me and if you can, come and support me on the day itself. I need all the love and sweaty high 5s to get me through 26.2 miles. But as each mile passes, I’ll be thinking of Mama and many others that aren’t able to do what I can. I guarantee there will be tears, there will be smiles and there will be one little brown girl finishing the marathon on 23rd April! 

Time to get that card out!

I have been asked to raise £2000 by Alzheimer’s research, but those who know me, will know I love a good fundraising challenge, so my target is £5001! You may ask me why that extra £1. Well, in Indian traditions it’s a sign of good luck to give that extra £1.

:-)

DONT LET ME DOWN TEAM.