The story of dementia started for me with my grandma, also known as Nai Nai. I knew that I was losing her, but I didn’t want to believe it.
Resisting
At first it was all about resisting. I resisted the idea that my old familiar Nai Nai wouldn’t always be there for me. I resisted the role of being the only doctor in the family, because that felt like too much responsibility. I wanted to stay in my familiar granddaughter role. After all, like most children, I had internalized the implicit family contract that promised I would get approval and security in return for good behaviour. But what constituted good behaviour in this context? Was it better to continue to pretend that there was nothing wrong? I wasn’t ready to face up to the harsh reality of what was actually happening. No one did.
It wasn’t so much denial, as straight up ignorance
I was in denial about the fact that Nai Nai’s brain might be sick. I just wanted to help her feel better, but it seemed impossible. She became so anxious about losing her things that we would spend hours searching for where she might have squirreled them away. I remember sitting with her at desk, as she became more restless and frantic, trying to recall what phone numbers to dial, to reach anyone at all who might be able to reassure her. I didn’t recognize it at the time, but this was early dementia manifesting as classic sundowning behavior.
And it went on for well over a year, until one sunny afternoon in Discovery Bay. Mom and I were engaged in yet another fruitless all-out search with Nai Nai for her missing purse. As I sat across the room from my mom, our eyes met in a kind of helpless exasperation for perhaps the hundredth time. And in that moment, I realized that it wasn’t about finding the purse. Because even if we found it, she would lose it again or forget that we had found it. This was the definition of insanity, and I had to step up to exert my leadership as a doctor in order to break us free.
I see now that Nai Nai’s fear and paranoia felt outsized because at some level she realized that she might be losing her mind, which of course would be at once terrifying and devastating for anyone. I knew that her memory had been getting worse, but I had attributed it to aging and grief over my grandpa’s death the year prior. Maybe it wasn’t even so much denial, as straight up ignorance about what early dementia looks like, up close and personal.
Enduring
In the years that followed, I did my best to bridge that awkward divide between my roles as granddaughter and doctor in the family. I learned as much as I could about dementia treatment, but the statistics were incredibly scary even then and the scientific landscape looked impossibly bleak and unpromising. I knew that medicines existed to help with dementia symptoms, but my expert colleagues told me not to get my hopes up. So I did my best to protect my family from these hard truths, allowing those in denial to keep protecting the fiction that we all so desperately needed at the time.
At the time, I didn’t realize then how completely out-of-touch I was with my own feelings. channeling all that energy into looking for solutions and then blaming myself for failing to come up with any. In retrospect I see that I was angry and heartbroken. Angry at this version of Nai Nai that sometimes still looked and sounded like her, but more often acted like a complete stranger. I grew heartsick watching her act out on her fear through unpredictable tantrums, but couldn’t yet accept that my real Nai Nai was never coming back.
Like any primary care specialist, I did my best to help Nai Nai and our family to accept her chronic disease and disabilities from a place of compassion and understanding. We struggled as the ground shifted under our feet and family dynamics evolved. Everyone marveled at how Nai Nai’s younger brother seemed to be completely cognitively intact throughout his 90s. An excellent example of how good we were at politely avoiding mention of our private fears about the familial risk of dementia.
Discovering
Of course I saw many more cases of dementia and other neurodegenerative diseases in my clinic over the subsequent decade. And while there was promising new research being reported for conditions like multiple sclerosis and Parkinson’s disease, there didn’t appear to be any good news on the horizon for Alzheimer’s dementia.
As it turns out, I was wrong to be focused on looking for breakthroughs in drug treatment alone. Because strong evidence had quietly been accumulating about the importance of the many preventive approaches that could help to reduce our individual dementia risk. Lifestyle medicine research involves a wide range of potential interventions and varied populations, so it’s taken time to collect enough data to connect the dots.
At first I felt overwhelmed by the sheer volume of discoveries in brain science. It was hard to know what to focus on, or where to begin. The integrative medicine part of my doctor's brain wanted to embrace it all, but my internal medicine experience kept me grounded and skeptical. After all, it couldn't possibly be as simple as “just” practicing healthy lifestyle habits, could it?
Yes - it could. It was simple but not easy, to follow through with behaviour change. Which was why we needed coaching to support people.
As I gathered more evidence and validation, I could not help but feel more hopeful. Yes, the science was solid. We can and should be working to prevent dementia at a population level. It’s all about practising healthy lifestyle habits that also have collateral benefits for our overall physical and mental health.
My brain health journey was about gathering pearls of experiential learning
I would get more and more excited as I learned how much certain things could help our brains, like exercise, sleep, nutrition, cognitive training, art, music and foreign languages. And of course I would try to do it all. But it was easier said than done, to put it all into practice.
Luckily I had my coaching tools to fall back on. I had to remind myself that this was a marathon and not a sprint. My brain health journey was definitely going to be more about gathering the pearls of experiential learning along the way, rather than being solely focused on the destination.
I learned to allow myself to choose only one habit to focus on at a time. I started with sleep, and found that it helped to shift my habits by trying little experiments, like not having a clock to tell me what time it was if I woke up in the middle of the night. And if that seemed helpful, I would keep doing that. Next, I might move on to charging my phone away from my bed, and so on.
Expecto patronum
I was keen to share what I was learning in my blog, and because I was also beginning to stretch and grow as an artist, I challenged myself to share a piece of my art with each blog article. So that is how iHeal Mag got its start.
I still find dementia statistics to be scary and bleak. Somehow the world seems a little darker and the temperature drops a few degrees, when I consider how many other families will be impacted as mine was. It was the same kind of chilling effect that the dementors from Harry Potter’s world have on anyone close by. But like Harry and his friends, I’ve taught myself to fight the “dementor effect” by conjuring up a protective patronus by recalling happy memories. Mine is an elephant.
One of my happiest memories is having Nai Nai at my medical school graduation. She had been denied formal education as a girl, and yet she was the only one in my family that believed I had what it would take to become a doctor. It made me so happy to be able to make her proud. I know that she would love the idea of my bringing along as many people as possible, in my fight against dementia.
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