I wrote this article in June, before any of the other stuff happened. I wanted to go back and edit it a little, but after I re-read it today, I decided it is just fine how it is.
They say the way that people live on is by telling their stories. Preserving those memories, their history, the way they were and the way they lived, allows them to reach through the ages and continue to make an impact in this world.
It feels odd to memorialise someone who is still living. Yet, somehow, it also feels appropriate – in some ways, Alzheimer’s disease takes the living out of being alive.
My grandmother was formally diagnosed with Alzheimer’s on 4th April 2023, which was also the day I was laid off from IBM. That was easily in the top five of worst days of my entire life. But as with any other disease, the symptoms started much earlier than the diagnosis. We had hoped it was just aging, but I could tell something was wrong as far back as 2021.
Let me take you back in time. Let me tell you stories about who she was, because that is honestly one of my favourite things she taught me. She graduated university in her 40s, which was something she was so proud of, and with good reason; she’s the first in our family to graduate. She dual-majored in History, and what would now be termed Gender and Women’s Studies. It is easy to see why she chose history as a major.
She was a master class in storytelling. Whether it was about a historical event she learned about, or an actual event she lived through directly, her innate ability to tell the story vividly and with detail really transported you there. You could feel it; you could picture it in your mind. I don’t believe I would have developed an interest in world history nor genealogy had it not been for her influence.
Speaking of genealogy, that was another area where we bonded greatly. Finding the history of our family, discovering the roots of our family tree, has been a lifelong hobby and passion of mine. And it started all those years ago, in the late 90s, when I curiously asked her what she was doing with her computer. She responded that she was using Family Tree Maker and Corel Web Designer to digitise a bunch of old family records and preserve them in a series of collections organised by branch and surname.
Thinking on it, that may genuinely be how I ended up in the technology end of librarianship. It sure sounds a lot like the projects that I hear about daily during our team standups! This also taught me how important it is to keep and preserve records of historical interest. It’s the reason I print, not just save-to-disk, records of my actual achievements. Always have multiple copies of what matters and always keep a hardcopy.
She was an avid, and prolific, writer. She published dozens of articles all over the Internet when that became a thing and had a Themestream before Medium was even a glimmer in Evan Williams’ eye. She wrote a children’s picture book, a young adult novel, and a full-length political thriller. The combination of her storytelling ability with her depth and control of the written word really gave her the ability to have a strong voice, both online and on the page. She loved the online community that she developed. She had multiple blogs with thousands of followers.
Of course, it isn’t fair to paint a picture of a perfect person, as such a person has never existed. She did have flaws, and we had our fair share of disagreements. Yet, even then, I think it really helped me to develop and mature. It taught me how, and when, to stand my ground on what I believe in – and when to just let it go. It also taught me a more mature way to work through our differences, through words and mediation instead of shouting.
I will also admit that our differences came to a head in my late teens and early 20s, and it wasn’t a great period for us. There was a coldness that blew through, partially because she couldn’t quite grasp technical and remote work. In a way, I have sometimes wondered if she is also on the autism spectrum like me, and she just didn’t have a good way to filter what she meant. (“When are you going to get a real job?”, she asked while I was working 11 hour days at a startup, six days per week.)
When I moved to Oklahoma in 2016, it felt like a real reset in our relationship. My mum followed, mostly because I was still taking care of her after she became disabled in 2012, but also because she wanted any excuse to leave the misery of Florida behind. My grandmother always said she loved it there, but after a few months, she decided to move to Oklahoma as well. She sold it as being more in touch with nature, since Oklahoma has real seasons, more wildlife, and more open nature preserves compared to the concrete jungle hellscape of Florida. But I think it was also because she wanted to be nearer to us.
She stayed in my flat for two weeks while her apartment was being readied, and I will always treasure the memories of watching the 2016 Olympics as a family. However, I think my all-time favourite memories will be the 2018 FIFA World Cup. She wasn’t staying over; she didn’t have to be here. But we watched many of the matches, and the entirety of the quarterfinals, semifinals, and finals, as a family on my living room TV.
It was after each of those matches that we really reconnected. We hashed out what had come between us. And she did something that I didn’t expect. She admitted her mistakes and vowed to do better – and did. That may have been the other important lesson she taught me: if people want to change, they can, no matter their age. Here she was, a woman in her 70s, working to better herself.
We started pairing up on genealogy research projects again. I helped her redesign her living room. She took up exercise cycling after falling in love with watching the Tour de France. It was honestly a wonderful transformation to witness.
I haven’t even covered her other talents and passions. She quilted. She crocheted, everything from pillows and wearables to stuffed animals. She drew art – her favourite subject was landscapes, but she also loved drawing dogs of all variety and breed. She was a photographer and her Canon Rebel is still in her bedroom, even now, where she always kept it when she wasn’t out exploring Oklahoma and taking photos of it.
I started noticing changes in her after Covid lockdown. Honestly, seeing her decline after that makes me think it really was a mistake to do. If she had caught Covid and succumbed, it probably still would have been less suffering for her than what happened because of the social isolation of the lockdown. It’s been proven that social isolation can cause dementia to develop and worsen. She didn’t have the same elocution as before. Okay, sure, that could have been her age. But her stories didn’t have the fidelity they once did. And they were becoming repetitive – not even the stories themselves, but the same details, said over again.
That’s when I really knew something was wrong. Something was off. That wasn’t normal, and it didn’t feel like just aging to me. And of course, two and a half years later, medical science was able to confirm that it indeed wasn’t just aging. But what is there to do?
I see her struggle, but I also see her still there. I know the person who taught me all those lessons, the person that had all that wisdom, the person that possessed all those amazing skills and passed some of them down to me, she is still there. But she is trapped in a mind deteriorating and slowly withering. And it has made her unquestionably miserable.
There’s a part of her that knows she can’t do like she used to. She can’t be like she used to. “Agitation in Alzheimer’s disease” is a real thing and I can tell you exactly where it comes from: the frustration of having a personality of living and being prevented from it by a disease that you developed through no fault of your own and have no control over.
Articles like these should always end with a summary of feeling. And I can summarise my feelings quite concisely.
To my grandmother: I love you, then and now, and I miss who you were, in the same way I am sure you do as well.
And to Alzheimer’s disease: I hate you with a burning passion to see you eradicated from the face of the Earth.