Living with Multiple Sclerosis (MS) has taught me to notice the small things—changes in my energy levels, shifts in my symptoms, and how my body reacts to stress. What I didn’t realize was that this awareness would also come into play as I began to notice the subtle, almost imperceptible signs of dementia in my mom.
Caregiving while managing a chronic illness is like walking a tightrope. You’re constantly balancing your needs with the needs of someone you love, trying not to let stress tip the scales. At first, I didn’t even realize I was stepping into the role of a caregiver. I thought I was just helping my mom through a busy time. But slowly, little signs began to add up, and I realized something was changing—not just in her, but in both of us.
It Started With the Little Things
The first signs of dementia didn’t feel like red flags. They were more like faint whispers in the background, easy to ignore or explain away.
For instance, my mom started misplacing her keys. She’d call me frustrated, convinced they’d vanished, only to find them later in the most obvious places. At first, it seemed like nothing—a normal lapse of memory during a busy phase of her life. But looking back now, I realize how frequently it was happening.
At the same time, I was dealing with MS fatigue, which made even those small calls and conversations feel like interruptions in my carefully managed energy. On bad MS days, answering her calls felt like running a marathon, but I didn’t want her to feel neglected.
Then there was her medication confusion. My mom had always been meticulous about her prescriptions. She could rattle off the names, doses, and schedules without missing a beat. But suddenly, she started asking me questions about her medications—questions she’d never needed help with before. “Did I already take this today?” or “What’s this one for again?”
Again, I dismissed it as stress. After all, she was going through a big move, and I know how stress can muddle even the clearest minds. I brushed it off, much like I brush off my own brain fog when MS flares up.
A Friend’s Visit Changed Everything
The turning point came when a family friend came to visit. He’s known my mom for years, and their Friday night card games of 5 Crowns were practically a tradition. It was a ritual filled with laughter and stories, something that had always brought her joy.
But this time was different.
As we sat down to play, my mom couldn’t retain the instructions. Not even the basics of the game she’d once mastered effortlessly. She kept asking, “Wait, how do I do this again?” or “What does this card mean?”
Watching her struggle was hard enough, but seeing the shock on our friend’s face made it even harder. He pulled me aside afterward and said, “That’s not the woman I used to play this game with every Friday night.”
That moment hit me like a ton of bricks. I had been so focused on managing my own MS symptoms that I hadn’t fully processed how much she was changing. It made me realize that while MS has taught me to adapt and push forward, it also blindsided me—I had been so busy juggling my own challenges that I hadn’t seen the full picture of hers.
The Signs Became Harder to Ignore
Over time, the small signs started piling up. My mom began fixating on certain ideas, harping on topics and refusing to let them go. At first, it was little things—like insisting she had already paid a bill when she hadn’t. But then came the repetition:
“Where are we going?”
“When are you coming back?”
She’d ask the same questions over and over, as if hearing the answers erased them from her memory.
On days when my MS was flaring, these moments felt especially heavy. My patience would wear thin—not because of her, but because I didn’t have the physical or emotional reserves to cope with both her confusion and my own limitations.
I also started noticing her frustration, which was unlike her. She’d snap over the smallest things, and I couldn’t tell if it was out of anger or fear. Watching her struggle with her own mind was heartbreaking, but it also brought a new level of stress into my life that I wasn’t prepared for.
Tools That Helped Me Along the Way
As someone living with MS and stepping into the role of a caregiver, I quickly realized I needed tools to make life easier—for both of us. Here are a couple of things that made a big difference:
- Daily Planner or Journal
Keeping a journal became invaluable for tracking my mom’s behavior. By jotting down notes about her memory lapses, repetitive questions, and confusion, I was able to spot patterns and communicate more clearly with her doctors. It also became a way for me to process my own emotions and manage my MS symptoms more effectively. - Reminder Board
For my mom, keeping a simple reminder board in the kitchen was a game-changer. I used it to write down her medication schedule, appointments, and even little notes like “Lunch in the fridge.” It gave her a sense of independence while reducing her anxiety about forgetting important details.
What MS Has Taught Me About Caregiving
Living with MS has been like carrying a backpack full of bricks—heavy, yes, but something I’ve learned to manage. Caregiving, though, added a second backpack. At times, it felt overwhelming, like I’d collapse under the weight of it all.
But MS has also taught me resilience. It’s taught me to notice small changes and adapt to them, to listen to my body, and to take things one day at a time. That same resilience came into play as I began to piece together the signs of my mom’s dementia.
It wasn’t easy to admit that something was wrong, but looking back, I’m glad I trusted my instincts. Noticing the signs early meant we could start navigating this journey together—even if it was a journey neither of us was ready for.
Final Thoughts
Dementia doesn’t come with flashing lights or big warning signs. It sneaks in quietly, changing the fabric of someone’s life until you can no longer ignore it. Living with MS has taught me to pay attention to the quiet changes, both in myself and in others. It’s taught me to be patient—not just with my mom, but with myself.
If you’re noticing signs like these in someone you love, trust your instincts. Talk to their doctor. Take the first step, even if it’s scary. Because caregiving, like living with MS, is about learning to balance love, patience, and strength—no matter how heavy the load gets.
What’s Next in the Series?
This blog was just the beginning of my mom’s dementia journey. In my next post, I’ll share the steps we took to get an official diagnosis—and how that process tested us both physically and emotionally.
