Dementia can creep up on you, slowly making once-easy tasks impossible.

I’ve started calling dementia “the narrowing.” And the truth is, I’ve seen it happen before.

It’s hard to pinpoint when my own narrowing started, but it was certainly before my mother died a couple of years ago. The sharp, funny, acerbic woman who was my mother become less and less herself. She was less able to travel. Less able to handle her many volunteer positions. Less able to be independent and live in the ways she wanted to.

She became a much narrower person.

I had a moment of realization about a year before she died. My mother, Susan, the strong, funny, outwardly afraid-of-nothing firecracker of a human, became unable to work her smartphone. Things that used to be easy, like answering a video call from one of her grandkids, became something that baffled and angered her. It wasn’t just forgetting to plug it in, or forgetting where she had put it, or forgetting to carry it with her. It was forgetting how the thing worked at all that really galvanized for me how insidious dementia is.

My mother, the first woman to take a stand and wear pants in her 1960s office (for which she was nearly fired). Susan, single mother to my brother, breadwinner, computer programmer (when there were few women computer programmers). My mother, Susan, could no longer press a button on a smartphone to answer a call initiated by a 4-year-old. Susan, afraid of nothing, suddenly afraid to even pick up the phone and try because it represented loss, confusion, anxiety. Her world narrowed.

I feel this narrowing deeply as I, too, start to lose bits of things that should be easy for me. I’m a highly skilled, top-of-my-game, successful engineer at a large corporation. I help create software that hundreds of thousands of people use. I’m afraid of the day when I can no longer navigate even the simplest technology. Afraid of the day I might not be able to use software I created.

Is it already happening? Is my confusion over this technical term because it’s a complicated idea, or is it because my brain no longer groks a basic computer science concept?

I’m a systems person. I create architectures that allow people to work through a process. What if I miss a piece of that process? What if I miss a connection point? What if I’m already narrowing and I can’t even see it?

I read somewhere that people diagnosed with dementia often lose something like 80 percent of their income within the first three years of the diagnosis. But what that article didn’t say is that it likely took a few years to get to the point where they even looked for something like dementia as the cause of poor job performance, which means that their earning power likely declined quite a bit before they even started to measure that 80 percent loss.

I’m going to be very transparent, very public about my dementia diagnosis and journey, even though I am deathly afraid that it will affect my current and future earnings. I have already lost a job (two, if I’m being honest with myself) because of this illness. It has already affected my earning power.

Where does this leave me and my family? Luckily, because of women like my mother, I don’t have to fight to wear pants to my office (and frankly, with COVID-19, who is even wearing pants?).

But we’re not in a place with very good guardrails for those of us struggling with the narrowing that inevitably happens as dementia progresses. For now, I can still work my smartphone, I can still be a breadwinner, I can still volunteer, I can still do video calls with my (now) 7-year-old.

But I’m seeing the narrowing happen, and I’m wondering how long before I’m part of that 80 percent metric.

Important: The views and opinions expressed in this article are those of the author and not Everyday Health.

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