I recently watched a Teepa Snow video in which she discussed the first symptoms of dementia. The comment she made that struck me was that you didn’t recognize it as dementia then, but looking back, you sure recognize it as dementia now. The old “hindsight’s 20/20” rule.
Mom exhibited all 10 early warning signs of dementia years before her official diagnosis. When my family discusses these behaviors now, we have an oh! that’s what that was all about moment. But when they were happening, we were really confused.
Mom just wasn’t being Mom. Or she’d have momentary Mom lapses, followed by long periods of Mom normalcy. Long enough that we’d forget all about those bizarre episodes, until they’d happen again. Of course, ultimately, they began happening more and more frequently, leading up to the big moment when we all said: MOM HAS DEMENTIA.
What did we see back then, that we now know were omens of trouble to come? Here are five of the most blatant signs:
1. Problems with planning and problem solving
Mom would be the first to tell you she was not an outstanding cook. Fact of the matter is, she really didn’t like to cook that much. She could, and she had some standouts like her brisket, beef tips, and cheese grits, but she also was not above resorting to Hamburger Helper or the infamous tuna casserole.
Let’s put it this way: having three kids under the age of five by the time Mom was 25 made her TIRED. So cooking was more of a hassle and a necessity than anything else. I can relate. Not to the kid part, but to the other part. But I digress.
Holidays were her crowning glory; they were always food perfect. Not fancy, but consistently delicious. There was the cornbread dressing that was to die for, the sweet potatoes made with pecans and brown sugar (hello!) and the turkey that always came out perfectly moist.
Yes, there was also the obligatory green bean casserole, complete with cream of mushroom soup and those canned crunchy onion things that could survive a nuclear apocalypse. But what Southern holiday table didn’t include that dish?
Then funny things started to happen: the dressing was dry; the jello salad wasn’t sweet (yes, I just said jello salad); or the sweet potatoes were just, well, terrible. We figured it was a random mistake, or the result of holiday kitchen chaos. Wrong, wrong, wrong.
She couldn’t follow the recipe. Her cognitive skills were in rapid decline, and it was becoming very difficult for her to concentrate and process information. Maybe measurements were becoming meaningless, or directions just plain incomprehensible. Maybe “cup” meant “tablespoon,” or “sift” meant “saute,” who knows?
It was only after diagnosis, while she was still highly functional and still at home, that we put this all together. We were in the kitchen with her, and witnessed firsthand her difficulty with recipes she’d used for decades. Then it hit us: That’s why we couldn’t eat the dressing last year! When we started comparing notes with other family members, we discovered a number of these mealtime mysteries.
2. Difficulty completing familiar tasks
My mom got a degree in Home Economics from Baylor University. She didn’t want to be a teacher, she wanted to be the perfect housewife, hostess, and mother. She’s a very smart woman, and would’ve excelled at anything. She chose to excel at this. It was the 50s, people, and it was the South to boot. This is what women did then, and I’m proud of her for doing it so well.
How to maintain the household budget was certainly part of the curriculum. Now we weren’t math wizards in my family, but Mom could handle a checkbook. She was very organized and meticulous, especially when it came to money. She was one of those people who couldn’t sleep unless she balanced her account to the penny each month.
So imagine my surprise a year or so before diagnosis when she asked me to double check an entry in her checkbook. I opened the register, and was shocked. It looked like it’d been filled out by a second grader. Partial entries, illegible entries, lots of blank spaces, and no balance at all.
When I asked her about it, she told me she’d been too busy lately to bother, and would fix it at the end of the month. She said she knew “roughly” how much was in there.
But now I know: she couldn’t balance the checkbook. She wasn’t remembering to write things down, and many times, I’m sure, she forgot she’d even written a check. I have no idea if she was bouncing checks or paying bills late. I can only assume she was.
Eventually, she became unable to even fill out a check. As I watched her struggle to translate the numbers to letters, and pause before she signed her name on the date line, I remembered the check register incident. I had no idea then what we were facing, but it makes perfect sense now.
3. Trouble understanding visual images
Mom loved to read. This was something we had in common, and we frequently talked about what we were reading, or what we planned on reading next. We traded books. We discussed characters and plots. Both of us went from one book to the next.
I still do. Mom? She quit reading. She remained interested in books, and would give me a list of what she wanted for birthdays or Christmas. But when I’d visit, those books would be stacked on an end table unread, or worse, still in the box.
Again, she used that catch-all excuse: “I’ve just been too busy.” Once she told me the plot was too complex and there were so many characters, she couldn’t keep up with them all.
I now know why: her brain couldn’t process all those endless words. It was too difficult to concentrate and retain what she read; no wonder it wasn’t fun anymore. It had to be extremely frightening as well. Neither one of us understood what was happening, so it was easier to just invent reasons to quit reading all together.
Now she likes magazines with lots of pictures, or coffee table type books, but no more literature.
4. Writing problems
My mom had gorgeous handwriting. She was never one to write long letters, but she would frequently send funny cards with a short note.
She also loved to cut out cartoons from newspaper comics and send them to us. She’d annotate them with personal quips, or would change the characters’ names to one of us or other family members. We loved getting those.
Thank God I kept many of her cards and cartoons, because she stopped sending them. I remember talking to my sister once about this change. We didn’t like it, but honestly didn’t give it much thought.
But think about the complex thought processes that go into understanding cartoons, especially abstract ones. I’m sure Mom’s perception and language skills had diminished to a point where she just didn’t get cartoons anymore, much less be able to compare and contrast a cartoon’s punch line or subtle meaning with others’ behaviors or habits.
As far as her handwriting, I can almost tell you where she was in the dementia stage based on this alone. Her beautiful script got progressively more wobbly and illegible as she advanced towards official diagnosis. We counted if off to normal aging, and forgot about it.
Now we know: she was having trouble forming the letters. It was like she was unlearning penmanship.
5. Unexplained personality changes
This is the granddaddy of them all, the cue that should’ve been our burning bush. But we all had superhuman denial powers, as most people do when faced with the possibility that their loved one is sick. You try your damnedest to explain it away rationally, and are usually successful. We were for years.
I mean, how do you keep explaining away incredible paranoia and bizarre personality changes? Well, Mom is getting older was one. Maybe she’s depressed, was another. Our favorite? The news is making her crazy.
Then there was the time she screamed at my sister’s kids and pinched one of them. You’d think we wouldn’t be able to discount such aberrant behavior. After all, this was Mom, the ultimate grandmother. But, we found a way. She’s stressed and not sleeping well was the tepid excuse we used.
And how about those almost daily calls to me and my sister to check on the status of giant lizards? You heard me. Seems there were many stories on the news about nine foot lizards roaming the backyards of South Florida.
My sister and I both lived in Florida; ergo, we had giant lizards in our yards. Only those Nile Monitor lizards were spotted around the Everglades, a good five hours drive from us. Never mind, those beasts could travel.
I’m not exaggerating when I tell you we got a call daily about this, especially my sister, who had young kids at the time. Mom would panic, sure that the kids shouldn’t be allowed to play outside. At first we thought it was funny, then it just got weird.
Mom had become paranoid, fearful, and very unreasonable. There was no consoling her; these lizards threatened our very existence.
And bedbugs? Remember when that was all over the news? You couldn’t say the word “bedbug” in Mom’s presence, because then she’d obsess about having them in her house. Or you having them in your house. Or in your hotel room. (OK, getting creeped out now.)
All of these stories point to a very serious fact: Mom was in the early stages of dementia. Like Teepa Snow said, we only know it now looking back. If you have similar stories about your loved ones, share them in the comments.
If you’ve recently been witnessing similar behaviors in your loved one, keep a close watch for sustained patterns. If you see these changes becoming the norm, please consider talking to your loved one about seeing a doctor. It’s a terribly difficult discussion, but all research points to early detection and medication as key in slowing dementia down.
We finally couldn’t ignore Mom’s patterns, so we took her to a doctor for cognitive testing. It was shocking how bad her results were; she was still very adept at masking most of her symptoms. We can’t prove that quickly getting her on dementia medication slowed her progress, but we’d like to think it has. If so, that painful conversation we had with her was worth every agonizing second.