The LBD Rollercoaster: My Personal Caregiving Story
The words that changed everything.
"Your husband has Lewy Body Dementia."
Thirty years ago, I met the love of my life. I was in my forties, with a successful tech career, active social life, and passion for travel. Then along came this amazing man who made me want to build a shared future.
We made plans for our future, just like everyone does.
It was a dream come true 5 years ago when our world came crashing down.
That day in the neurologist's office is still vivid in my memory. We left with a prescription in hand and a follow-up appointment for six months later. The drive home was quiet - both of us trying to process what we'd just heard. What we thought was just a sleep disorder had become something far more complex.
Sound familiar?
My journey is still evolving.
My superpower has always been research, so I dug in. What I found was either medical mumbo-jumbo that made my head hurt or information so overwhelming I couldn't continue reading.
Then I read about a local resource on LBDA.org and connected with Pat, another caregiver in our community who became my lifeline. Through her monthly support groups, I learned I wasn't alone.
More importantly, I gained the knowledge and confidence I needed to be a better caregiver.
There’s no magic wand.
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.
Knowing the hard truth can help you prepare for your journey.
Why this website?
There’s a gap. Not many people, including healthcare professionals, know about LBD - even if they know about dementia. When most people hear “dementia” they automatically think Alzheimers.
Yes, LBD and Alzheimer's share some similarities, but they're distinctly different journeys. Making it a distinctly different journey for the caregivers.
I'm not a medical professional,
I'm a caregiver, just like you.
After all of the research I had done for myself, I decided that if it would help one other person, I needed to share it.
And so, LBD Caregivers was born.
I carefully research and verify through trusted medical and professional sources everything here. But please, before making any changes, always check with your medical team - they know your specific situation best.
What you’ll find here…
Clear, practical information with as little medical jargon as possible.
Carefully vetted resources when you want to dig deeper.
Real experiences shared, not to overwhelm, but to help illustrate what’s being shared.
A welcoming space where questions are encouraged and support is available.
Here’s what I want for you.
Take what you need from this space and leave what doesn't serve you - it'll be here when you're ready.
Instead of worrying about what might be, take action now to prepare for the future.
You can become the advocate your loved one needs by educating yourself about LBD.
Knowledge builds confidence for handling what lies ahead.
AND ALWAYS REMEMBER
No one is perfect, and that's perfectly okay.
You’ve got this!
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.
