How It Feels to Have Dementia at 48

I’m a capable, independent, 48-year-old senior software development manager at a major technology company, a musician, and a mother of a sassy 6-year-old, and I’m scared to be marching toward a future where I may not remember the past.

I have a disorder called sarcoidosis, which I was diagnosed with in (party like it’s) 1999 (or was it 1996? I can’t remember; which is amusing considering … read on to see why).

I don’t know how the sarcoidosis developed. The running theory is that it started the year I was 7 and was repeatedly exposed to asbestos at school and some farm chemicals on our family farm in North Dakota and ended up in the hospital several times for pneumonia, scarlet fever, mono, and a months-long unexplainable high fever.

No Easy Answers When Worrying Symptoms Arise

I’ve lived pretty darn well with sarcoidosis for decades, but in the last few years I’ve had some worrying symptoms I attributed to that immune disorder (now deemed an inflammatory disorder, thanks to new research).

Most doctors have pawned off my symptoms as being a result of: that wacky disorder you have, your weight, your age, your stress level, anxiety, depression, your hormones, your … (the list goes on); even, “It’s all in your head.”

I live in Boston, with a wealth of medical experts at my fingertips. I kept seeking out different medical professionals, kept doing research, kept asking questions — even as I, myself, was mostly convinced that it just must be all in my head.

And guess what … it is in my head! As in, I have a bona fide, medically provable, measurable degeneration of function in certain parts of my brain; a blanket term for this is "dementia."

Dementia comes in almost as many forms as there are people, and my neurologist, her team, and I haven’t nailed it down to a specific one (and hey, maybe I have a unique one all to myself), but we’re working on it and working on maintaining (and hopefully bettering) my level of both cognitive and executive function and slowing the onset and severity of symptoms.

How Dementia Changes Your Mind and Your Life

Everyday things are getting so much harder. There are times when I can picture an entire conversation in my head, how I’d like it to go and what I want to say, but the words just will not come out of my mouth in the right way. If they come out at all, the words are a jumbled mess. This gets really tricky when I'm leading a meeting of a hundred or so folks over Zoom.

I’ve also stopped being able to write music. A big part of my life is my band, which I have been a part of for 15 years. We write and perform collaboratively, but now, other than the occasional percussion, I’ve stopped being able to manage my own parts.

I’ve even mostly stopped reading for pleasure, not because stories and reading don’t bring me joy, but because it’s so hard to keep the thread of the story while I struggle through the words.

A Part of Me Doesn’t Want Anyone to Know

So … why am I posting about this? To be honest, I’m not sure. I’ve had this essay written for months and kept debating whether to share it.

Dementia is such a solitary journey, with tendrils that affect your immediate family, livelihood, social engagements — basically every part of your life — in insidious ways. Speaking for myself, most folks I interact with, even those very close to me, might not realize how very f—ing difficult a time I’m having.

And honestly, I don’t even want them to! I want to appear “normal” and function like I used to, like I’m used to. I want to be able to count on myself to … be myself.

I’m embarrassed to be less than, I’m embarrassed to need help. I’m worried about personality changes. I’m angry when stupid things happen or I don’t do something as well as I used to because my brain is not cooperating.

I’m also scared.

Thinking about the future, scared to be dependent, scared my family will struggle financially, scared of how little time I might have, how little time my 6-year-old will have with me being … me.

Scared of the journey and angry at having to take it (and subject my family to it). Always thinking there’s so much left to do and honestly not knowing how long I’ll have to do those things (decades, hopefully, but maybe just a few years; no one knows).

But This Is Too Painful to Go Through Alone

I guess I’m writing about this because it’s such a quiet and painful disease to go it alone with. And if you’re facing it, you shouldn’t feel alone.

It’s more prevalent (especially in younger folks) than one would think, and though most folks don’t get diagnosed with it until they are decades older than I am, it’s not because they haven’t suffered the symptoms for years; it’s likely because doctors have run out of explanations and the person is finally at an acceptable age, by cultural and insurance standards — someday I’ll write about the struggles I’ve had with insurance, if I remember to! — to look at dementia as the root cause.

So there it is.

I have dementia.

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