I help LBD caregivers turn the chaos of caregiving into calm management so they can focus more on their loved ones and less on the to-dos.
But it took me years to figure this out and it wasn’t easy.
The words that changed everything.
"Your husband has Lewy Body Dementia."
Five years ago, that diagnosis turned our world upside down. What we thought was just a sleep disorder became something far more complex. We left the neurologist's office with a prescription and a six-month follow-up appointment, driving home in stunned silence.
Sound familiar?
My project manager brain kicked in - but not how you'd think.
My instinct was to research everything. What I found was either medical jargon that made my head hurt or information so overwhelming I couldn't process it.
Here's what I learned the hard way: Information isn't enough. You need a better way to organize everything.
I was drowning in notebooks, iPhone notes, and scattered laptop files with appointments, medications, symptoms, questions for doctors - I was constantly worried I'd forget something crucial.
Then I had my breakthrough: I had everything I needed, it just wasn't where I needed it when I needed it.
I realized I needed to apply what I knew about managing information to our caregiving situation. Not just lists, but actual step-by-step systems that would work even when I was exhausted.
The transformation.
Today, I walk into every doctor's appointment prepared instead of panicked. I have everything organized, I know what questions to ask, and never forget important details. I can even pull up recent treatment articles to discuss with the doctor.
More importantly, I can focus on the discussion and be present to support and advocate for my husband.
I had figured out how to organize the chaos into repeatable systems that actually work.
I gained the confidence I needed to be a better caregiver - not through more information, but through better structure.
Why this matters more than you think.
According to a recent LBDA.org article, caregivers for Lewy body dementia patients experience greater strain compared to those caring for other forms of dementia. This includes:
High blood pressure (40% of caregivers), in fact higher than general dementia caregivers.
Depression (33% of caregivers). Triple that of other Medicare beneficiaries.
Chronic back pain (33% of caregivers). Rates similar to ICU nurses and spinal cord injury caregivers.
The hard truth? You can't wing this level of complexity of being a caregiver. But you can learn to organize it.
What makes me different?
While other LBD resources help you understand the disease, I help you manage the chaos of living with it.
I'm not here to give you more information - you're already drowning in that. I'm here to show you how to organize what you have so it actually works.
I'm not a medical professional. I'm a project manager turned caregiver, just like you might be a teacher, accountant, or stay-at-home parent turned caregiver. The difference? I learned to apply organizing skills to caregiving chaos.
And now I teach others to do the same.
Why I created LBD Caregivers.
There's a gap. Not many people, including healthcare professionals, know about LBD. When most hear "dementia," they think Alzheimer's.
But LBD is a distinctly different journey - which means it's a distinctly different caregiving experience.
After developing systems that transformed our experience, I realized: if this could help one other person, I needed to share it.
What you'll find here.
Systems that work even when you're exhausted, built from real caregiving experience
Carefully vetted resources when you want to dig deeper
Real experiences shared to help you see what works and what to expect
A welcoming space where your questions are encouraged and support is available
Here's what I want for you.
Instead of worrying about what might happen, build systems that help you manage what you can control.
You can become the advocate your loved one needs by creating structure that works, not just collecting more information.
Better organization builds confidence for handling what lies ahead.
You don't need another expert telling you about LBD symptoms. You need someone who's been where you are and figured out how to make it manageable.
That's exactly what you'll find here.
Remember, go easy on yourself.
There will be good days and challenging ones. When those good moments appear, cherish them - they're the strength that carries you forward.
They call LBD the rollercoaster ride for a reason.
But you don't have to navigate it alone.
Whether you need practical advice, a moment of understanding, or simply the reminder that someone else gets it - this space is here for you.
