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We love dividing people into slots....on every possible pretext. And one of the pretexts is age. So it's infancy, childhood, pre-teens, teens, youth.....and from there on wards, we are downhill, or so we are made to believe. And as we hit the 60s, we are given that dreaded label - "old". Elderly people, culturally, are respected and honoured, but often not treated as normal individuals anymore. We put them on a pedestal, and expect them to do nothing but beg forgiveness from God in a corner of the house. What needs to be understood is that, yes, busy days have left elderly people a while ago. They are losing their sight and hearing and memory.....but most importantly, they start losing a sense of purpose and a sense of inclusiveness into the normal spheres of life. Society needs to realise that an inclusive attitude is what elderly people need the most. Activities that make them feel normal and attitudes that make them feel alive would make a huge difference. I probably would never have understood this till I witnessed my parents in old age. With that came my mother's dementia, and people's lack of understanding of it. Today is the International Day of Older Persons. And today, this is the daughter of an older person baring her heart.
My mom.....well.....what should I say but say that she forgets. And that she is not quite the person she used to be.
It started in her early 50s....maybe earlier......but that is my earliest memory of it.
She would keep her keys and forget where she kept them every day, besides other stuff.
Sometimes when I forget stuff expectedly as a result of juggling too many things in my mind perhaps, my daughter gives me a worried and intense look. She fears for me that I may have inherited the condition from my mother and my grandmother. Me and my siblings all secretly fear it for ourselves, we confess to each other in our "blood meetings" (where we hang out, once every six months at least, sans spouses or anyone else).
It's funny how we don't really fear inheriting my dad's heart condition or my mother's arthritis. What we fear most is inheriting her forgetfulness, which basically became full-blown and stared at us in the face after we lost our father and her companion of more than 5 decades. It accelerated at an unbelievable pace after my father left us. It seemed my mother had held back letting her memory slide downhill. She did not recognise life without him I guess. He was her friend, guide, confidante, the love of her life, the pivot of her existence. Two people, almost antonyms of each other, had one of the most beautiful companionships I have witnessed in my life. Once he was gone, she perhaps felt letting go of her memory was the best option......this would leave her in the long-gone past......retrograde amnesia. The present or recent past she was not so interested in.
Does she have simple dementia, as she is now 70 plus? Is it an effect of "mini-strokes" as her geriatric doctor suspects? Or is it Alzheimer's? And if it is Alzheimer's, is it SDAT (Senile Dementia - Alzheimer's Type). I don't really know the exact answer, because by the time it was discovered, the doctors felt there was hardly anything that could be done about it, and so invasive testing was avoided.
Causes could have been one or more of many. Psychological trauma, inheritance, nutritional deficiencies. Psychogenic amnesia or psychogenic fugue, if it is that, often occurs due to a traumatic situation that individuals wish to consciously or unconsciously avoid.
Fancy terms don't really matter to us. All we know is that it has not been easy. It has not been easy to see my vivacious, extroverted, friendly mother stare at an object for hours. It has been one of the toughest things to see my mother struggling for words that define simple objects……my mother who remembered Urdu and Farsi (Persian) poetry with a passion and would quote the greats often.
Whenever I write well, if I do, I know it is because she emphasised so much on my reading habits and writing style. Ammi had the most beautiful handwriting. Today, when for any emergent documentation she has to sign, it takes her 10 minutes for a single signature. She labours over it and I feel helpless seeing that. When my beautiful mother who had an elegant wardrobe and was known for her sense of style cannot recall when she last changed her clothes. When she who organised dinners for and cooked for scores of people forgets whether she has had breakfast an hour back or not. My sister, who lives abroad and comes every few months, shared that she fears that the next time she comes, ammi may not remember her name.
Luckily, the dementia has not been able to take away the most important things. Like the way my mom’s face lights up when she sees her children and grandchildren. Like her insistence on saying her prayers on time, even though she has forgotten the exact Arabic verses. Like her basic nature of always staying thankful and saying “Shukar Allah ka (Thanks to Allah)” whenever someone asks her how she is. Like her sense of humour and her unexpected witty jokes which are always on spot and still make us laugh. Like how she still knows, without my saying, that I am upset or unwell. Like how her inherent calmness and sweetness of nature still remains intact, untouched, unaltered.
We are fortunate that her memory loss has not been very bad. It could’ve been worse. She has good days and bad days. And over time, we have somewhat learnt how to handle it.
But do people remember the important stuff? Or is their forgetfulness more serious than my mother’s dementia?
Have they forgotten that one does not choose to have amnesia or dementia, just like one does not choose to have other illnesses like heart disease or cancer or a hemorrhage? Why is then the acceptability of other illnesses more than neurological or mental illness, may it be Alzheimer’s or schizophrenia or dementia or chronic depression? Perhaps because these illnesses alter behaviour. And alternate behaviour threatens us because we do not understand it. And when we do not understand something or find it different, we marginalise it.
My mother may have dementia but she remembers and knows enough to know when someone is warm to her and when not. She knows when people talk in front of her about her as if she is not there…..When they just exchange pleasantries with her but do not have the time, patience or inclination to sit with her and make conversation. When their faces have weird reactions when she says something a little off centre simply because her brain has weakened just like someone’s heart or lungs may weaken.
This is not just true for her. This is generally true for how we treat elderly people. We marginalise them instead of including them in everyday activities and get-togethers. Add to it dementia and people have even lesser understanding unless someone close to them has had it. They also do not know what the caretakers and the family are going through.
The mind is as much a part of our body as is any other…..it is time we took time to understand the illnesses of the mind. Only understanding can develop empathy.
This column was first published at the writer's blog
The writer is a freelance journalist, blogger and columnist, who writes on human rights, reproductive health and gender issues.
