It’s one thing to realize something is wrong—it’s another to act on it. By the time I decided to talk to my mom’s doctor, the silent signs of dementia were no longer subtle. She wasn’t just forgetting where she’d left her keys or struggling to follow the rules of a card game. She was becoming someone I didn’t fully recognize.
But getting a dementia diagnosis isn’t as simple as walking into a doctor’s office. It’s a winding road of uncertainty, waiting, and emotionally charged moments. For me, this journey was layered with the added challenge of managing my Multiple Sclerosis (MS) while balancing caregiving. Faith became my anchor during this time, and without it, I’m not sure I would have made it through.
Here’s how I walked this road to clarity—one step, one prayer, and one hard decision at a time.
The Early, Silent Signs of Dementia
Looking back, the signs of dementia were there long before I acted. My mom kept misplacing her keys, forgot to take her medications, and asked the same questions repeatedly. At first, I brushed it off—after all, anyone can have a forgetful day, right? And with the stress of moving her across the country to live closer to me, it was easy to assume these little moments were temporary.
But the week we moved, she ended up in the ER. I’ll never forget when the doctor asked me if she had been “confused” lately. I waved it off, chalking it up to the stress of the move. Stress affects everyone, I told myself. I’d seen how my own MS symptoms—brain fog, fatigue—flared under pressure. Maybe this was her version of that.
Fast forward six months, and she still wasn’t herself. I called friends from back home and asked, “Did she ever seem like this to you? Did she have a stroke?” Something had shifted, but I couldn’t quite put my finger on it.
The Journey to a Dementia Diagnosis
The next year felt like a blur of medical visits and ER trips. Every few weeks, we’d be back in the emergency room, with my mom complaining of vague pain or strange symptoms. It was exhausting, not just physically but emotionally.
I began to wonder if the ER trips were her way of seeking attention. Then I realized something much deeper: she couldn’t communicate her symptoms well anymore. The words she used didn’t match what was happening to her body, and it was clear that something was very wrong.
Meanwhile, my own health felt like it was slipping. The stress of these appointments often triggered MS flares—fatigue, weakness, and brain fog. I remember sitting in the ER, silently praying, “God, please give me clarity. I can’t do this alone.”
The pieces started coming together when her physical therapist pulled me aside after a session. “Something’s wrong,” they said. “You need to take her to a neurologist.”
The ER physician’s assistant expressed similar concerns during one of our visits, asking me questions about her confusion and whether she was living alone. That was my wake-up call. As much as I wanted to avoid the truth, I knew I couldn’t delay any longer.
Recognizing the Signs During a Neuropsych Exam
This time, I went with her to the neurologist. He asked me as many questions as he asked her. The picture was becoming clearer: forgetfulness, repetitive questions, misplaced items, confusion about her medications. He referred her to a neuropsychologist for further testing.
The neuropsych exam was unlike anything I had imagined. I expected something simple—”remember these three words,” “who is the president”—but this test was far more thorough. It involved memory recall, word association, and questions designed to test her cognition from every angle.
The test was done remotely, which I initially resisted. But in hindsight, it was a blessing. Being behind a screen meant she couldn’t rely on charm or social cues to hide her confusion. I sat in the next room, listening as the test unfolded like a slow-motion disaster.
I prayed throughout that exam. I prayed for answers, for clarity, and for something to name what was happening to her. I also prayed for the strength to accept whatever the results might be.
The Diagnosis: A Mix of Relief and Heartbreak
A week later, we sat in front of the neuropsychologist to hear the results.
“Mild dementia, likely due to Alzheimer’s. Stage 2-3,” they said.
Hearing those words felt like a double-edged sword. On one hand, I felt relief—finally, we had answers. No more guessing, no more wondering. But on the other hand, I felt heartbreak. There was no escaping the reality of what lay ahead.
It reminded me of the moment I was diagnosed with Multiple Sclerosis. After months, even years, of unexplained symptoms and countless tests, hearing those words felt like a veil had been lifted. Yes, the diagnosis was overwhelming, but it also gave me clarity. Now I knew what I was dealing with, and with that knowledge came a sense of empowerment.
My mom’s diagnosis felt similar. The answers didn’t erase the difficulty of the journey ahead, but they gave us something to name, to understand, and to manage. It was the first step forward, out of the fog.
Reflection: What This Journey Taught Me
Getting my mom’s dementia diagnosis wasn’t easy. It tested me in ways I didn’t expect—emotionally, physically, and spiritually. As someone living with MS, I’ve had to learn how to navigate uncertainty, manage my own health, and seek strength from within. This experience with my mom felt like an extension of that same lesson.
When I was diagnosed with MS, I felt overwhelmed by the unknowns, but clarity eventually brought resilience. With my mom’s diagnosis, I found myself leaning on those same lessons:
- Accepting what we couldn’t change.
- Preparing for what we could.
- Finding peace in the small moments.
If you’re navigating a similar journey, here are a couple of resources that helped me::
- Symptom Journal: Keeping a journal of my mom’s behaviors and symptoms helped me organize my thoughts and have clearer conversations with her doctors.
- Questions to Ask After a Diagnosis (Alzheimer’s Association): This resource gave me the tools to advocate for my mom and understand what to expect next.
Now, with her diagnosis in hand, I feel like we’re finally moving forward—with clarity, purpose, and a plan.
What’s Next?
In my next blog, I’ll share a specific caregiving moment when everything changed—how one text brought both chaos and clarity to my role as a caregiver.
