Caregiving is one of the most emotionally demanding roles I’ve ever taken on. And as someone living with Multiple Sclerosis (MS), it’s more than just an emotional burden—it’s a physical one, too. Stress isn’t just something I feel; it’s something I see reflected in my symptoms.
Fatigue, brain fog, muscle weakness—these all flare up when my stress levels spike. And nothing spikes my stress quite like the late-night texts, urgent phone calls, and panic-filled messages I get from my mom.
Here’s the reality: caregiving and MS don’t always mix well. But over time, I’ve learned that the only way to survive both is to set boundaries, prioritize my health, and recognize when enough is enough.
When the Panic Texts Start
The first time I got one of these messages from my mom, I didn’t know what to expect. It was late at night, and my phone lit up with a text that said:
“I just woke up and realized home but so screwed up. How did I get here and how can I talk to you to find out what happened?”
It was 10:45 PM. I had been winding down after a long day, trying to manage my own MS fatigue, when her message jolted me out of any sense of calm.
These messages didn’t happen every day, but they became more frequent as her dementia progressed:
- “Help me.”
- “Call me.”
- “Where is everyone?”
- “Too much pain.”
- “Call me. Do you have my purse?”
Some were short and urgent, others rambling and incoherent. The last thing you want to do as a caregiver is ignore a loved one who’s in pain or confused, but these messages didn’t just tug at my heartstrings—they pulled me into a spiral of stress.
How Panic Calls Affect My MS
MS and stress are a dangerous combination. Whenever one of my mom’s messages came through, I’d feel the familiar tightness in my chest, the adrenaline coursing through me. My mind would start racing: Is this a real emergency? Do I need to go over there? What if I can’t help her?
The problem is, stress doesn’t leave when the moment passes. For me, it sticks around, manifesting in ways I can’t ignore:
- Fatigue: After an especially chaotic night, I’d wake up the next morning feeling like I hadn’t slept at all.
- Brain Fog: The constant worry made it hard to focus on work or even simple tasks.
- Physical Weakness: My muscles felt heavier, slower—making even basic caregiving tasks more difficult.
The worst part was how this stress compounded over time. I started to feel like I was drowning in caregiving responsibilities and losing myself in the process.
The Importance of Boundaries
It took me a long time to realize that saying “no” doesn’t mean I love my mom any less. It means I’m protecting my ability to care for her in the long run.
Boundaries became a lifeline—not just for me, but for her, too. I had to set expectations for both of us.
Here are a few boundaries I’ve put in place:
- Emergency Action Plans:
I made it clear to my mom that if she’s feeling sick or in serious pain, she needs to call her doctor or go to the ER—not me. As much as I want to be there for her, I can’t be her first responder. - Scheduled Check-Ins:
I started scheduling daily check-ins with her, whether by phone or in person. These give her reassurance that I’ll be there for her at specific times, which has reduced the number of panic messages I get. - Limiting Late-Night Messages:
I’ve asked her not to send non-emergency texts after 9 PM. If it’s not urgent, it can wait until morning. This simple rule has done wonders for my stress levels. - Relying on External Resources:
I’ve also found helpful guides, like the Alzheimer’s Association Caregiving Guide, which offer tips on setting compassionate but firm boundaries with loved ones. These resources reminded me that boundaries are not neglect—they’re necessary for everyone’s well-being.
How I Care for Myself Amid the Chaos
Living with MS means I have to prioritize my health—because if I’m not well, I can’t care for anyone else. Here are some of the things that help me stay balanced:
- Prayer and Faith:
When the panic texts come in, I stop and pray before responding. It helps me find a moment of calm in the chaos and reminds me to trust in a greater plan. - Journaling:
Writing down my frustrations and fears has been a game-changer. It’s a way to release the stress that builds up and reflect on how I’m feeling both physically and emotionally. - Saying No:
Learning to say “no” without guilt has been one of the hardest, but most necessary, lessons. I’ve learned that I can’t be everything for everyone—and that’s okay.
Final Thoughts: Balancing Love and Boundaries
Caregiving isn’t about being perfect. It’s about doing your best while acknowledging your limits. For me, that’s meant setting boundaries with my mom—not because I don’t care, but because I need to care for myself, too.
If you’re navigating caregiving and feeling overwhelmed, I encourage you to take a step back and assess your boundaries. You can’t pour from an empty cup, and it’s okay to protect your health while caring for someone else.
Because at the end of the day, caregiving isn’t just about love. It’s about balance.
Resource for Caregivers
If you’re struggling to set boundaries or balance caregiving responsibilities, the Alzheimer’s Association Caregiving Guide is a helpful resource. It offers practical tips for managing stress, setting boundaries, and caring for yourself while caring for someone else.