Raising Awareness Around Alzheimers
Mental Illness….”Yes that’s right”, I said the “M” word. We are going to talk mental illness. 10 years ago, I first started noticing changes in my Beautiful mum – Savita. I noticed she was becoming forgetful She would forget what day it was, what month it was, what year we were in. I remember this starkly as I had just given birth to my second child, and I remember the first trip down to the GP along with mum. The GP agreed that there was some cause for concern as there appeared to be a definite element of forgetfulness. This was followed by a journey of around 4 years of going from one diagnosis to another, starting with depression, to vascular dementia and then finally to Alzheimer’s.
Alzheimer’s is a degenerative disease of the brain. Basically it starts turning off parts of your brain. Early stages include symptoms like forgetfulness, slight changes in behaviour – especially around moods. During the Middle stages the forgetfulness increases, they will forget names of friends and family, names of objects, personal hygiene is affected, simple tasks become difficult, then slowly the ability to care for yourself diminishes totally and the patient is unable to wash, dress themselves, toileting becomes a struggle, and the ability to eat on your own is also lost. Later stages the individual becomes extremely limited with what they can do, and are usually bed bound.
We had embarked on what would be a heart breaking 6 year journey with mum and her Alzheimer’s. Out of everything we had to deal with one of the hardest parts for me was seeing the sheer lack of awareness, understanding and ignorance of the illness from people we knew and the wider community. The Asian community.
The most common question my mum was asked was, ‘but why do you forget, try, try really hard and you will remember’. So mum would try, and try, and try, then cry. Cry because she felt useless that she could not remember a name for instance, or what she ate for breakfast. “I don’t choose to forget, so why do they keep saying to me “why do you forget” I’m trying really hard but I just can’t remember” this would normally follow with sobbing and waves of frustration and anger towards herself.
She started to feel very alienated, despite having her family and friends around her. But mum wasn’t the only one who felt alienated, so did I.
So around 3 years ago, I decided that I wanted to set up a support group where patients suffering from Alzheimer’s could go, along with their caregivers and talk to other members, who actually understood the journey.
Sadly, we lost mum In July 2014, exactly a month after she had turned 71. Since then it has become a priority for me to launch the support group – which I have named Shakti. Shakti means strength, as strength is what mum was to me, and strength – an abundance of, is what you need when you are dealing with Alzheimer’s.
I want Shakti to help as many people as possible who are effected by Alzheimer’s not only the patients but the carers and family members too. I can proudly say that through my mum’s pain and suffering a positive fruitful outcome has emerged. A group which shall be life changing for its users. A group where patients and their caregivers can feel comfortable amongst themselves.
Shakti will provide a central hub of resourceful information on Alzheimer’s and the different types of help that is available. My vision is having Shakti spread nationwide. My promise to my mum, to carry on the beautiful legacy of unconditional love and support which my mum stood for, my goal is to help as many people as I can, within my power to do so.
Let’s start addressing mental illness in our society and stop the stigma which is attached to it, the brain gets poorly too, just like the heart does, it is an illness, it is nothing to be ashamed about.
So my humble plea to you all, is that if you know of any Asians who you may think are showing signs or symptoms or who have been diagnosed with Alzheimer’s or dementia please let them know about Shakti, so that they do not have to walk this journey by themselves. We are here to hold hands and face this together.
