The Big Scary A-Word
By Indu Manohar
Until the year I turned 33, I thought Alzheimer’s Disease was a scary tragic thing that happened to other people. I didn’t think it would even remotely touch my life— until my father-in-law’s diagnosis.
An Alzheimer’s diagnosis is a death sentence, right? Your brain cells are dying— you can slow it down, but there’s no way to stop it.
It starts with forgetting to buy milk at the store. Then, losing a word that was at the tip of your tongue. Then, getting lost in a familiar place, or being unable to place a familiar face. Losing interest in learning new things, finding it hard to read, being unable to understand things that came easily before, or getting anxious about meeting people old & new. You hold on to foundational childhood memories— staying only within a shrinking spotlight in your mind, while all the other lights start to go off one by one, forever.
So why am I talking about this now, on a random Saturday? Because today, Sept 21, is Alzheimer’s Awareness Day. Alzheimer’s is the most common form of dementia, and is the seventh leading cause of death worldwide. But to most people it’s an irrelevant “old-age issue” that you don’t have to deal with— until suddenly someone you care about has it, and now you do have to deal with it.
Someone in the world develops dementia every 3 seconds. There’s no guarantee Alzheimer’s and other age-related dementias won’t make its way into your life too. Is that too sensational to say? I don’t think so. Death comes for all of us. And some level of cognitive decline as well— if we’re privileged enough to live past 65— with the risk of developing AD doubling every 5 years after age 65.
Dementia goes undetected and undiagnosed perhaps because the symptoms— forgetfulness, loss of vocabulary, inability to learn new things, decline in fine motor function— appear so similar to the cognitive changes that come with the natural aging process.
And we don’t talk about aging enough to know what’s normal or not normal. Our collective shame around signs of aging show up in ageist “jokes” about forgetfulness, creams and colors to hide wrinkles and white hair, discomfort around or dehumanization of people with mental or physical decline, and a deep culture of normalizing the invisibilization of aged people.
While cancer gets attention for the damage it wreaks on the body, dementia is not discussed so openly— despite the damage it wreaks on the mind. Definitely because it’s an “old-age” issue, but perhaps also because, in many ways, cancer is less scary to people than dementia is. With cancer you are still you. And many cancers now have treatments and cures. But with dementia, you lose your identity, your ability, your expertise, your power. And the leading causes of death for Alzheimer’s have to do with your brain forgetting how to take care of itself— like drinking water, or fighting infection, or breathing, or swallowing. There is no cure, only decline in function and capacity, until death.
I only met my father-in-law— “baba”— when he was 76 years old, much after the disease had already secretly taken hold. Alzheimer’s onset can happen up to ten years before the first symptoms are even noticed.
A child of the Partition of Bengal, he worked and studied hard to become a brilliant orthopedic surgeon. He was known to have loved traveling, learning new skills like photography and painting, experimenting with new food, living in different countries, and meeting new people. But by the time I met him, he had retired from his medical practice, stopped traveling, once misdiagnosed my mother-in-law’s stroke, and frequently forgot my name— all signs of an aging man slowing down. We didn’t know it was anything more than that— especially since he was admired back in the day for his impressive memory of surgical texts. It would seem that his brain adapted fiercely around the loss of cells, forging new pathways where old ones eroded, until even that wasn’t possible and the symptoms began to show. He’s now 82, and every day we see him tell his old stories with less detail, losing his train of thought more often, conflating old memories with current realities. He’s slowly failing to tell familiar objects apart— like a cellphone from a remote, or a daal from sabji— and forgets that he’s already asked what day it is multiple times.
We’ve lived with my parents-in-law since the diagnosis in early 2023, but it took me till early this year — one year after the diagnosis— for me to fully internalize that my husband and I were now Alzheimer's caregivers. And sometimes in the midst of work and life I forget, but then the gravity of it comes crashing back again.
Here are some things I’ve learned in no particular order:
Caring for a dependent human being is so much about their moods, needs, and abilities, that for some time you have to set aside a lot of your own conveniences and desires. How well you are able to do this without burning out depends on your resources and support structures and privileges. We’re lucky and privileged enough to have a supportive community of people, flexible jobs, and generational wealth to fall back on.
Whether it’s when caring for a child, nursing a sick person, or managing someone’s end-of-life care, EVERYONE does this at some point in their life, either as a giver or a receiver. And yet, we don’t talk enough about what this entails, because this labour is disproportionately invisiblized as “woman’s work.”
While there’s no cure yet, the things that are good for Alzheimer’s prevention are generally good for us otherwise too— exercise, healthy food, a community of loving people, good quality sleep, reducing stress, animal companionship, reading, volunteering, learning new skills, knowing multiple languages, playing & listening to music, avoiding smoking, moderating alcohol consumption, reducing sugar intake, and living a happy and meaningful life. (I realize this is a tough prescription to follow under late stage capitalism!)
We can and must prepare for our end-of-life, just as dedicatedly as we prepare for a new job or a move to a different country. This involves saving up for end-of-life care (whether that’s at home or at a retirement facility), downsizing belongings, reducing financial complexity, communicating your end-of-life needs & decisions while you're still able to, and challenging our cultural amnesia towards our own mortality. Other cultures have so much to teach us about dealing with ageing and death without aversion or dread— such as the practice of “Swedish Death Cleaning.” We must turn to them with as much enthusiasm and curiosity as we do in pursuit of beautiful birth practices or wacky marriage traditions.
Pain is foundational. The stories that stay with us are the traumatic ones from childhood— like baba’s still fresh memories of his family's flight from Bangladesh and the violence that followed. Our minds are so complex and so fragile. Take the time now to understand the intricacies of your own mind, process its trauma, embrace its unique brilliance, and love it for what it is right now. This is time well spent. Don’t take it for granted.
Joy is also foundational. Baba still enjoys long walks around the neighbourhood— looking at pretty flowers, laughing at snoozing street dogs, and admonishing drivers who don’t use their indicators. He loves sweets of all kinds, listening to old Hindi & Bengali songs, having everyone gathered at the table during tea time to listen to his stories, and sitting in the sunlight with his wife. Making a life in which he can continue to enjoy these things as long as possible is all we really have to do.
Note about Cancer and Alzheimer’s Disease: In a totally wild turn of events, it's been discovered that AD and cancer share an inverse correlation. Because of how the diseases function in the body, the presence of one reduces the risk of the other. In one study, the risk of cancer in the presence of AD was reduced to 50% and the risk of AD in individuals with cancer was decreased by 35%. Researchers are trying to understand how to use these findings to reduce the risk of both AD and cancer.
