My mom’s favorite movie had to be “Sound of Music.” It always seemed to be on Sunday nights, so we’d race home from church to watch it. Those songs are like my childhood soundtrack. So, when I thought about telling the story of Mom’s dementia from the beginning, who popped in my head but Julie Andrews. Go ahead, you know you know every song from that movie. So…let’s start at the very beginning (a very good place to start).
Anyone dealing with dementia finds themselves asking: when did this start? There are always small signs, but we usually ignore those, or count them off as isolated incidents: forgotten names; momentary memory lapses; one odd statement. Or maybe there’s bizarre behavior, but it’s not until later that we identify it as dementia’s beginning.
But there’s almost always one defining incident, one that can’t be ignored. That incident is the one that kicks us out of denial, the one that makes us say: this is dementia.
At least that’s how it was for us. I honestly can’t remember many small incidents. I know there were plenty of times she searched for words or forgot names, but we dismissed all that as normal aging. What wasn’t normal was when Mom’s behavior seemed to change drastically.
My sister had just moved to Florida, and Mom came to help her family move into their house. Well, someone showed up, but it sure didn’t seem like Mom. She was mean to her beloved grandkids, furious at everyone, and completely undone by the moving stress.
What we saw was a very different Mom. We counted it off to hormones and a very stressful time. She was having trouble sleeping, and that’s enough to make anyone crazy. It wasn’t constant, so we forgot about it.
But slowly we began to see that this behavior — overly anxious, worried, sometimes erratic and a bit paranoid — was more the norm than not. But we never put that behavior into the dementia category until years later when we learned it oftentimes was a precusor to dementia’s onset.
That was years before THE event – the one moment where it all came together.
The company I was working for at the time was involved in a major lawsuit. I was traveling out of state to attend a crucial hearing on the case, and Mom was extremely concerned about it. She made me promise to call her the minute I got out of the hearing. I kept my promise, and had a half hour detailed conversation with her about what happened.
The next morning, my sister called me. Mom was really upset that she hadn’t heard from me after the hearing, and was beside herself with worry. I told my sister that I had called Mom. We both were silent on the phone for a minute.
That was the event that couldn’t be discounted, ignored, or explained away. I’m pretty sure we said something about dementia, but I don’t remember.
I don’t remember the exact details of my next call to Mom, although I know I called her right away. I know I told her that I’d called the night before, and that I was concerned. Maybe she was sick? I don’t remember what she said. I’m sure she had some excuse to rationalize the memory lapse.
What I do know is at that moment, I knew Mom had dementia. In that context, all the other incidents over the years started to make sense.
Do you have an incident like that? A defining moment when it all became clear?
I’ve asked my family about this, and they all tell one story or another about the time they KNEW Mom had dementia. Like me, it was typically one incident that put all others into context. All of our stories fall within these ten early warning signs of dementia:
- memory loss
- difficulty with everyday tasks
- disorientation
- language problems
- changes in abstract thinking
- poor judgment
- poor spatial skills
- misplacing things
- mood, personality or behavior changes
- loss of initiative
For my stepbrother, it was Mom’s constant calls about the computer. Now she wasn’t a tech whiz by any stretch, but she did pride herself in learning to email, pay bills online, and use a search engine. Then, the computer just seemed to stop working. She was constantly frustrated with it. We got her a new computer, certain that the old one just wasn’t up to standards. But that didn’t help.
She’d call him repeatedly to report one problem or another with the computer. He’d go by to check, and would redirect Mom on how to do something he’d already taught her to do. One time the screen was black, and Mom thought the computer had crashed. But it had only gone into the energy save mode . He put a sign on the computer that said “if screen is black, move the mouse.” But that didn’t stop the calls: she couldn’t find her contacts list; she didn’t know how to get to email; she couldn’t find Google; the bank’s website had disappeared. No amount of written instructions helped. She couldn’t handle the everyday tasks that used to be elementary.
My stepsister talks about her wedding. Actually, we ALL talk about that day. First of all, the instructions we’ll get dressed at the church were taken literally. My mom and stepdad showed up in their pajamas, robes and slippers.
Second, Mom had been helping a Chinese university student with her English, and thought it would be a nice cultural experience for her to attend an American wedding. The family agreed. But when it came time for the bride and groom to be whisked away to their honeymoon in the limousine, Mom opened the passenger door and told the driver to take her foreign language student home. She sat the girl in the front, and closed the door. The family was too stunned to comment, and in their super good-natured fashion, my stepsister and husband agreed to take the unsuspecting girl home. I think it’s clear that Mom’s judgment, formally honed by Emily Post and a lifetime of over-the-top southern manners, was beyond impaired at that point.
I could put countless stories into each of the above 10 categories, as I’m sure you could. If you’re seeing some of these early symptoms in your loved one, get them to a doctor for an examination. The year Mom forgot the phone call, forgot how to use the computer, and committed the largest wedding faux pas in modern history, we convinced her to go to a doctor. The result, ultimately, was a diagnosis of vascular dementia. I believe that getting a jump start on her treatment gave us a few more good years with her.
What about your family and friends? What behavior changes, events or stories do you now look back on, in the context of a dementia diagnosis, and say oh yeah, THAT’S when I knew?
Share your stories with us in the comments. Or share them on the OBC Reader’s Stories page. Maybe our stories will help someone else. Maybe they’ll inspire someone to get themselves or a loved one to the doctor. Maybe they’ll make someone feel less alone. And if so, our dementia journey becomes something bigger, something even more meaningful than caring for those we love.
Big hugs!