What I Wish I Knew: You Don’t Need to Know Everything Right Now

Nancy Treaster reflects on how navigating her husband's dementia diagnosis led her to co-found a nonprofit for other caregivers.

By Nancy Treaster

I’ll never forget the afternoon I sat in my home office, surrounded by stacks of leaflets, multiple browser tabs open, and my phone buzzing with notifications from every dementia caregiving group I’d joined. After my husband Kim Treaster was diagnosed with dementia in 2015, I did what any Type-A person who wants to know it all would do: I tried to learn everything about everything, all at once.

That day, I was simultaneously researching details about his diagnosis (primary progressive aphasia, a type of frontotemporal dementia), reading about end-of-life decisions, trying to figure out how to handle all the activities of daily living (ADL) challenges to come, and comparing memory care facilities. I was drowning in information in some areas and struggling to find information in others, yet somehow still felt completely unprepared for the challenges right in front of me.

The irony wasn’t lost on me. I’d spent decades managing strategic operations for a billion-dollar software company, breaking down complex problems into manageable steps. Yet here I was, paralyzed by information overload, unable to distinguish between what mattered now and what could wait.

That’s when I realized: the problem wasn’t a lack of information. The problem was that I had no idea what to prioritize and no easy way to find it.

The Beginning: When Everything Feels Urgent

When Kim first received his diagnosis, I believed every single piece of advice I found was urgent. I spent weeks researching questions that didn’t match where we actually were in our journey.

Meanwhile, I was missing the basics: how to communicate with Kim as his cognition changed, how to create predictable routines that would reduce his anxiety, and how to support him behind the scenes to help him maintain his dignity and independence as much as possible.

Looking back, what I needed wasn’t more information — it was someone to help me cut through the noise: a roadmap to what was important at this moment in our journey.

The Wisdom: Looking Around the Corner, Not Over the Horizon

Here’s what transformed my approach: I learned to look around the corner, but not too far ahead. This simple concept changed everything.

Instead of trying to prepare for every possible scenario five years down the road, I focused on understanding what typically happens in the next six to twelve months. This meant I could be proactive without being paralyzed. I could prepare for what was likely coming next while still being present for what was happening now.

For example, when Kim started having difficulty managing his medications, I didn’t immediately jump to researching residential care options. Instead, I focused on solutions for that stage: medication management systems, working with his doctor on simplifying his regimen, and establishing daily routines that made the process easier for both of us.

This approach gave me something I hadn’t felt in months: a sense of control.

What Actually Helps: A Framework, Not Just Information

After Kim passed away in 2024, I reflected on what would have truly helped me during those overwhelming early days. Together with my longtime friend and fellow caregiver Sue Ryan, I co-founded The Caregiver’s Journey, a nonprofit focused on providing practical guidance for dementia family caregivers.

Based on our combined decades of caregiving experience, we created the Navigating Dementia Caregiving Roadmap. It’s the resource I wish I’d had from day one — a 20-step framework that organizes the caregiving journey into three distinct stages: In the Beginning, the Messy Middle, and Later On.

What makes this different from the countless articles and advice columns available online? It tells you not just what to do, but when to do it. It helps you identify which caregiving stage you’re in and provides specific, actionable steps that match your current reality and links you directly to the resources you need.

My Advice to You

If you’re feeling overwhelmed by the sheer volume of dementia caregiving information available, here’s what I want you to know:

First, give yourself permission to not know everything right now. You don’t need to become an expert on every aspect of dementia care on day one.

Second, identify which stage of the caregiving journey you’re actually in. Are you dealing with initial diagnosis shock? Managing changing daily routines? Planning for more support? Your caregiving stage determines your priorities.

Third, focus on what’s important now. Not next year. Not five years from now. What does your loved one need this week? This month? What support do you need today?

Fourth, look around the corner to anticipate what’s coming in the next six to twelve months, but resist the urge to prepare for everything at once. This balance between being present and being proactive is key to sustainable caregiving.

Finally, use structured resources that map to your caregiving stage. The Navigating Dementia Caregiving Roadmap (available free to download as well as an interactive webpage at https://roadmap.thecaregiversjourney.org/) was designed specifically for this purpose, but any resource that helps you prioritize and organize information by stage will be valuable.

The Path Forward

My journey with Kim taught me that caregiving isn’t about having all the answers — it’s about knowing which questions to ask when. It’s about building confidence through preparation, not paralysis through over-preparation.

The information you need exists. But you need a filter, a framework, and permission to focus on what matters most right now. That’s how you transform overwhelming information into actionable wisdom.

And that’s how you find your way through this journey with a little more clarity, confidence, and peace of mind.