The day started like any other—a moment of calm that I’ve learned not to take for granted. My mom had texted me early, saying she was up and moving around but planned to stay in to do some housework. Her tone seemed positive and normal, which put me at ease. So, I went about my own day, running errands at Lowe’s, admiring Christmas decorations, and working on my cowgirl collage while finishing a documentary on Netflix.
Then, the text came in.
“Can you come down here? It’s important.”
My heart dropped.
When I called her to get more details, she could barely explain what was going on. Her words tumbled out, disjointed and unclear. She just kept saying she needed me to come, and that she would explain everything when I got there. At that moment, I had no idea what I was walking into, but a familiar wave of anxiety crept over me.
Was this going to be one of those moments where confusion and paranoia had taken over? Was this going to be a hospital visit? I grabbed my phone charger, just in case, and headed out the door.
Paranoia and Patterns of Confusion
This wasn’t the first time I’d felt this sense of urgency. My mom’s texts and calls had been growing more erratic in recent months. Sometimes, she’d accuse me of leaving things around her house that didn’t belong to me—like a bag of peanut M&Ms or an old medicinal cream. Other times, she’d tell me she had conversations with my son (her grandson) that never actually happened.
The worst moments were when she’d call me convinced that someone had been coming into her house while she was out. “They moved things around,” she’d say. “They’ve been in here.” At first, I didn’t know how to respond. Was there any chance this could be true? But over time, I realized this was part of her dementia—this paranoia, this deep-seated fear that she was losing control of her environment.
To ease her mind, I’d set up a camera facing her front door so I could check if anyone had been coming in and out. Of course, no one had. The camera was for her peace of mind, but it also became a tool for me—I could check to see if she was moving around during the day or if something seemed off. In many ways, it was heartbreaking. Watching someone you love struggle with paranoia and confusion feels like a slow unraveling of their independence.
The Weight of the Text
As I drove to her house, my thoughts spiraled: What if this time it’s serious? Caregiving often feels like balancing on the edge of a cliff, and all it takes is one moment—one text—to send everything into freefall.
Living with Multiple Sclerosis (MS) only makes this balance more delicate. Stress has a way of triggering my symptoms, bringing on fatigue, muscle tension, and that foggy feeling that makes everything seem harder than it is. I could feel the familiar tightness in my chest as I pulled into her driveway, bracing myself for what was to come.
When I walked in, I found her hunched over the bed. She looked frazzled, overwhelmed, and in pain. Her words didn’t make much sense at first. She was trying to piece together events from earlier in the week, asking me about things that had happened during a recent dinner we’d shared. She kept saying, “I don’t understand what’s happening to me,” and it broke my heart.
Navigating the Moment
Her physical pain seemed to be connected to how much she had been moving around that morning. I asked her to sit down and rest, but she resisted. She’s always been stubborn, fiercely independent, and unwilling to rely on others—even when she needs help.
I gave her some pain medication and a muscle relaxer, and eventually, she sat down. I turned on the TV to distract her and started folding her laundry. But even as I tried to calm the situation, her mind wouldn’t stop racing. She kept asking me questions, replaying conversations from days before, and trying to make sense of her pain.
At one point, she got up because she was hungry and started making herself food. Despite her discomfort, she couldn’t sit still or let her thoughts settle. Watching her wrestle with her own mind was like watching someone try to fight a tide that keeps pulling them under.
The Emotional Toll of Caregiving with MS
Moments like these are hard to process. On the one hand, you’re focused on addressing the immediate issue—helping her rest, calming her anxiety, or making her comfortable. But on the other hand, there’s this deep emotional weight that lingers.
For me, caregiving isn’t just physically demanding—it’s emotionally draining. Living with MS means I have limited energy reserves, and once they’re gone, they’re gone. On days like this, it’s easy to feel like I’m being stretched too thin, like I can’t give enough to either of us.
At the same time, these moments remind me of the importance of grace. Grace for her, for what she’s going through, and grace for myself—for trying to balance it all the best I can.
Faith in the Chaos
As overwhelming as the day was, my faith kept me grounded. When I found myself getting frustrated or overwhelmed, I said a quick prayer: “Lord, give me patience. Help me meet her where she is.”
Those small moments of prayer, reflection, and trust made all the difference. They reminded me that I’m not doing this alone, that I can lean on my faith even when I feel like I’m falling apart.
Tools That Helped Me Cope
Here are two tools that made this experience a little easier to manage:
- Home Security Camera: Setting up a camera facing her front door helped ease her paranoia and gave me peace of mind, knowing I could check on her remotely.
- Daily Journal for Caregivers: Writing down her behaviors, symptoms, and moments of paranoia helped me track patterns and communicate more effectively with her doctors. It also became a way to process my own emotions as a caregiver.
Final Thoughts: Finding Balance Amid Chaos
Caregiving is unpredictable. It’s filled with moments of urgency, like the text that pulled me out of my day, and moments of heartbreak, like watching my mom fight against her own mind. Balancing caregiving with MS isn’t easy, but it’s taught me to lean on my faith, trust my instincts, and find tools that make life just a little easier—for both of us.
If you’re navigating caregiving, paranoia, or dementia, know that you’re not alone. Moments like these are heavy, but they’re also reminders of the strength and love we carry for those we care for.