Dementia gently infiltrated our lives, making its presence known through forgotten phrases (“Listen to the sound before the rain,” mum suggested), incidents of urine leakage (well, she’d birthed three kids, we weren’t entirely taken aback), and confusions about familiar places (“Can you remind me where the restroom is?”).
The disease infiltrated stealthily and once it had established a foothold, it revealed its full strength. Suddenly one evening, my mother inquired: “Can you recall when we were first introduced?” By the afternoon, her memory served her well enough to recognize me as her child. However, by night, she had no recollection. It used to fluctuate as abruptly as the serene low tide being overcome by the ferocious high tide.
Once, I heard someone on the radio saying, “People often believe that if they ignore daunting subjects, they would avoid the outcomes.” However, dementia became our reality despite our denial. Denial is potent, it meticulously veiled the heartbreaking reality that my eloquent mother was gradually spiralling into severe cognitive impairment. What made it harder was the fact that her parents lived hearty lives well into their 80s with their intellectual faculties intact, sparking the question, isn’t dementia supposed to be hereditary? The answer can possibly be affirmative, but it is not decidedly so.
Towards the end of my mother’s life, I was her primary carer for the last year and half. In that period, I watched this devastating disease, like a river slowly eroding a sandy bank, gradually strip away the very essence of my mother until nothing was left of her intellectual discourse and scarce remained of her physical abilities. Her personality was obliterated and many of our shared memories lost as dementia leeched away her memory, robbing her of her ability to eat and move around. Without her recollections, conversations about our shared past – the people we knew, the places we’ve been – became fruitless. Questions about her breakfast shifted to simple acts like picking flowers on a walk together, until even this was impossible because she forgot how to walk: “What’s the purpose of my feet?” she once reflected while I attempted to untangle her legs and guide her steps. Thus, the severity of her cognitive decline was truly unnerving.
People often quizzed me on my ability to remain composed in my role as a caregiver. Did I always manage to keep my sanity? Not necessarily. However, I found solace in handling the disintegration my mother was experiencing with an eye of intrigue. I might attribute my ability to avoid spiralling into madness to the constant questions I asked.
With respect to dementia prevention, merely knowing isn’t enough; comprehension is essential. Simple statements such as “exercise is beneficial for your brain” don’t satisfy me; I crave a thorough understanding regarding the rationale behind it.
Regarding my mother, I delved into understanding her behaviours and emotions. This helped me uncover the reasons behind her refusal to take showers, being fearful of incorrectly loading the dishwasher or feeling imprisoned during bad days. The fear of appearing foolish seemed to plague her more than her memory loss.
I also sought answers from medical practitioners. Why was my mother afflicted with dementia? Was it due to her prolonged depressive phases, or her stroke, or perhaps, the loss of her ability to read following the stroke? Or, was it something entirely different?
At times, dementia seems to function as a loaded gun–an inevitable click of the chamber regardless of our efforts, akin to a round of Russian Roulette. However, it’s not always the case. But one thing I know for certain is that dementia isn’t a natural consequence of ageing, contrary to popular belief.
Just like people who casually conclude their destiny based on parental patterns, such as hair loss, my friend firmly believes that his father’s senility is a certain prediction of his future. Casually uttering such statements, without acknowledging the brutal reality of the disorder, is infuriating. It’s not a gentle decline but a harsh unravelling. Doesn’t witnessing such a fate compel him to carve a different life path to avoid inheriting his parent’s terrible disease? This is what drives me.
My youngest daughter shares her concerns about me acquiring “What Gran had.” She inquires about the measures I take to prevent dementia.
What actions do I take?
I pay close attention to every article about dementia. Their messages are as prominent as admonishing fingers, emphasising the importance of maintaining an active lifestyle, adhering to nutritious eating habits, refraining from sugar, ensuring ample sleep, and fostering social connections.
As I sit at my desk for increasingly protracted hours, a cup of sugary tea is my constant companion, providing the necessary push after a restless night’s sleep, assisting me in pushing through the afternoon when a nap seems tempting but work calls. Is it possible to replace these lifestyle patterns with healthier ones in order to build a balanced lifestyle? If I incorporate brisk walks – covering five miles daily to a rhythm that accelerates my heartbeat, could that counterbalance the risks associated with an author’s inactive existence? Could I offset my sugar-laden tea and tempting chocolate morsels by politely declining a second wine serving, limiting meat intake, and loading my dish with an abundance of organic vegetables? Is it plausible to make such health-compensating swaps?
I engage in virtual meetings, teasingly categorised as ‘harassments’ by my daughter, with medical professionals and specialists in the field. They advise that my genetic makeup may increase my vulnerability to Alzheimer’s, especially if my DNA grapples with two problematic APOE4 genes. However, it may also be entirely unrelated. Even if I succumb to the disease’s pathology, they reassuringly share, I may not necessarily suffer its symptoms if I successfully amass cognitive reserves, a protective barrier that is akin to layers of fat for times of scarcity in the future, a dam to hold off the draining dearth of dementia. I probe further into this: they encourage me to test myself mentally, urging: ‘Engage in difficult tasks’.
Therefore, I challenge my mind with literary endeavours, with word games, puzzles, and spelling bees. I aim to equip myself with an expansive vocabulary in hopes the familiar words will never desert me. A medical expert from Dublin suggests engaging in fresh experiences. Venturing to unseen restaurants, trying novel dishes, uncovering alternate return paths — all with the underlying message of aiding your mind in learning how to bypass the roadblocks set by Alzheimer’s amyloid plaques.
The stealthy encroachment of dementia is particularly silent because it quietly infiltrates the unseen sectors of our lives, areas where we least anticipate danger to take residence.
Understanding the underlying reasons for dementia prevention is crucial to me. Just reading that physical activity benefits my brain is insufficient; comprehension is key. Once I grasp this, I begin weight lifting at the fitness centre. Scientists advocate using your muscles and brain cells or losing them. Leafing through books for answers, I identify myself in other people’s narratives. I even found an author with a mother who also had Alzheimer’s.
Watching my own reflection, awkward and perspiring, I raise a 5kg weight over my head. I despise every moment of the hour-long session I endure three times a week. Yet I keep reminding myself of the brain-derived neurotrophic factors activated by exercise, contributing to cerebral neurogenesis, even if I still appear the same.
The hidden impact of dementia is even more sinister as it invades unseen areas where we least anticipate danger. Who would have imagined that my mother’s oral hygiene could influence her cognitive wellness? My mother’s self-care took a hit when she was battling depression, neglecting to brush her teeth. The side effect of her anti-anxiety medication resulted in a perpetually parched mouth, a perfect breeding ground for bacteria that can swiftly infiltrate the brain.
Impaired cognition during her dementia stage often left her forgetting the process of brushing. I helped her maintain the oral hygiene of her few remaining teeth, her dentures neatly placed in a glass near the sink. I guide her amidst deep confusion on the correct way to hold the toothbrush, identifying my own reflection as I brush later.
My smile may not be flawless or bright, but it is healthy, a fact confirmed by my dentist after an X-ray; no signs of bone or periodontal diseases, though she does warn about my aggressive brushing. I ponder whether I brush this intensely to preserve my teeth or my memories.
Having written a commendatory email to an author about her brilliant book, with a mother suffering from Alzheimer’s mirroring my own experience, I had a torrent of questions awaiting her, even though I hadn’t read the book.
“She claimed that her book contained all the answers. She reminded people that taking care of a dementia-stricken parent during the last stage of their life can surprisingly give a sense of delight.
Delight, can it be?
In hindsight, if not an actual delight, could I have discovered some useful, potentially optimistic lessons in the final months I spent with mum, while I posed my enquiries? Could her, through a dreadful instance, served as a beacon of critical learning?
Before my mother’s brain disorder, I barely concerned myself with my thoughts. However, now they have dominated my mind.
Bedford Square Publishers have published Anthea Rowan’s memoir ‘A Silent Tsunami’.”