September 21 across the world is observed as World Alzheimer’s day.
Alzheimer’s disease is the most common form of Dementia; in 2010 it was estimated that 35.6 million people across the world live with dementia, these numbers are expected to nearly double every twenty years and it has become a major public health concern as the world’s population ages. Much of this increase in numbers is expected in developing countries like India and China. Dementia is the collective name for a group of progressive degenerative brain syndromes which affect memory, thinking, behaviour and emotion; there are a large number of conditions which cause the symptoms of dementia, as a result of changes that happen in the brain and the ultimate loss of nerve cells (neurons). The most common causes are Alzheimer's disease, vascular dementia, dementia with Lewy bodies and fronto-temporal dementia (including Pick's disease). It is said that every 3 seconds someone in the world develops dementia.
Alzheimer’s disease in developing countries is poorly understood and there is a lack of or no infrastructures and support systems for a person with dementia, their family and care – givers.
More than often carers for persons with dementia are informal in nature such as family members, due to the dearth of trained and professional care –givers. This is the case more so in developing countries. In India, where most Mental and Neurological disorders are poorly understood and there is an absolute lack of awareness, several individuals with Alzheimer’s go undiagnosed; for those who are diagnosed, families struggle to provide care due to poor access to information, lack of support and the absences of trained care – givers.
Family members of persons with dementia while being care – givers also have to face several hardships – emotionally, socially and financially; however the care – giver burden continues to remain unacknowledged.
While having Alzheimer’s is equally dreadful for the patient and the care – giver, often there are moments of lucidity that bring in hope and joy.
The month of September each year is celebrated as Alzheimer’s month and the theme this year is Remember Me. Having spent most of my teenage years caring for my grandmother with Alzheimer’s and having done a research study on care - givers, I understand the various challenges faced by the diagnosed individual, family members and care – givers. Growing up, I often found myself wondering how one could live their life not knowing, it was almost like my grandmother lived in a parallel universe - as though her mind and body functioned in a different time and space.
Usually, when persons with Alzheimer’s are spoken of we hear heart wrenching stories of the tough times faced and hard decisions that had to be made. When I look back, remembering my grandmother I end up thinking about the funny instances - which would fascinate me about how the brain can sometimes (mis)function. One such instance was when my grandmother refused to go for her regular evening walk; the hassled care – taker whom she had fought with on the way back came home complaining to my father. My grandmother, upon being asked why she was refusing to walk roared back at my father in an angry voice ‘I have taken 108 rounds of the park!’ My father and I both looked at each other and couldn’t help but laugh. It was physically impossible - at her age - for her to have taken 108 rounds, in fact even 8 was a lot for her; but there was no arguing with her; she was convinced of having taken 108 rounds, being the authoritarian woman she was, the chances of her being convinced otherwise were bleak.
This year the theme for Alzheimer’s month being Remember Me, I thought why not bring out some of these light moments; the idea is not to romanticise the illness but to give an insight into the everyday lives of people living with Alzheimer’s. Assured that others having relatives with Alzheimer’s might also have experienced such situation, I decided to speak to individuals having relatives with Alzheimer’s and asked them to share some stories from their experience. Below are some such light moment they shared with me.
One of them wrote, ‘my grandma used to think I'm her daughter (my aunt who lives in LA), so much so that when she came to visit the last time, she wouldn’t recognize her. She didn't remember she had grandchildren. We had a long time stay at home help who had worked in our house for more than 50yrs, having brought up my dad and all the grandchildren. He had retired to his village a few years before, and had come to Delhi for a visit at the same time as my aunt. When he walked through the door she squealed in delight and recognized him in an instant… quite happy calling out to him for all her needs. Needless to say, my aunt was quite miffed!’
Another one of them shared, ‘my grandfather used to eat quite healthy food. He was the one who would avoid sugar and buy gourds of different types far too often. In the second stage [...of his Alzheimer’s], he put on a lot of weight. Part of it was because he would forget that he had eaten and would demand food. The other however was that he grew a lot of fondness for halwa and gulab jamuns, aloo paranthas and samosas! He refused to eat doodhi or tori (variety of gourds)!’
A friend shared ‘Meieit (grandmother) was very fond of her husband during her dementia free days, that fondness stayed despite the memory loss and for most parts, my grandpa remained familiar to her. During afternoon naps she would hold his hand and cover their interlocked fingers with her tapmoh(ladies' shawl). Modesty was her strong suite.
When your memory leaves you, you are stripped down to just your bare soul, exposing who you truly are in that moment. My meieit, she was a genuine sweetheart.’
Another friend shared over the phone about how his grandfather - now a retired lawyer - wakes up and gets ready each morning to go to court and how he constantly keeps finding excuses to go to work because he forgets he has retired.
Living with Alzheimer’s is hard. Mostly people refer to the madness and irrationality the disease brings. When I spoke to people and had to mention my grandmother’s condition, they’d often reply with “I’m sorry to hear that” or “that must have been odd”. Truth be told, living with my grandmother made me realise that more than in illness, it often was a journey back in time.
Her personality was constantly evolving, mutating, and instantly reorganising to rebuild time passed in the present moment. In the chaos, you often saw an individuality surface, traits of the person’s self beaming out because no matter where they were in their mind, their personality always translated the time into the person who they always were...deep down.
That’s how we remember them.