Living With Lewy Body Dementia - Nora Poppins style

09/04/2025

Three months after my daddy died, I thought I’d be further along. But the truth is, I’m still swimming in grief…and paperwork. And let me tell you, paperwork doesn’t care if you’ve had enough tea or tears for one day.

Add dementia caregiving to the mix (my mom has advanced Alzheimer’s and my loved one has Lewy Body Dementia), and it’s a tangled ball of yarn nobody warned me about. That’s exactly why I created The “After” Workbook. I needed a guide that said: “Here’s the next gentle step.” So I wrote one.

If you’re walking through the “after” or preparing for the “before,” you don’t have to do it alone. 💜

Read the full story on the blog ➡️

Three months after my father’s death, I’m still tying up loose ends while caregiving. Here’s what I’ve learned—and why I created The After Workbook.

08/31/2025

💜☕ Why do dementia caregivers get so little help?
Some days it feels like we’re doing Olympic-level caregiving while the world just shrugs and says, “Good luck with that.” Truth is, dementia caregivers are some of the most overworked and under-supported folks around — and it’s about time the world noticed.
In my latest Living with Lewy blog, I talk about why help is so scarce, why caregivers often feel invisible, and what needs to change — from better training for doctors to real respite for families.
✨ Spoiler: YOU are not invisible here. You’re seen. You’re valued. And together, we can be squeaky wheels (with glitter, of course).
👉 Read more here

08/30/2025

Some folks watched the Diane Sawyer interview with Emma Heming Willis, and I’ve been seeing lots of chatter about it. Here’s the thing: unless you’re inside someone’s four walls, living the moment-by-moment reality of dementia caregiving, you really don’t know what it’s like.

My loved one has Lewy Body Dementia (and Capgras Syndrome on top of it) — but there are over 100 types of dementia. The truth is, the target is always moving. Decisions aren’t made lightly — they’re made out of love, necessity, and sometimes sheer survival. And yes, people may offer their opinions from the sidelines (bless their well-intentioned hearts 🫖), but unless they’re here answering the 200th repeated question, redirecting the midnight wanderings, or any of a million other things that can happen in a day, they don’t get to judge.

Truth is, most of us caregivers never signed up for medical school. We’re improvising, learning, stumbling, and figuring it out as we go — while juggling families, jobs, and the hope of a hot cup of tea before it goes cold. ☕️

So to my fellow caregivers: you are doing your best. You’re doing the brave, messy, holy work of loving someone through a disease that doesn’t play fair. And that, my friends, is enough. 💜

08/27/2025

Some days caregiving feels like following behind with a mop and scrub brush—cleaning up the messes dementia leaves in its wake.
This week? Heavy, scary, bone-deep weary.

I don’t have a shiny bow to tie it up with, but maybe that’s the point: honesty is hope. If you’re standing in your own mess today, know this—so am I. And you’re not alone. 💜

Full story here —>

Caregiving with Lewy Body dementia and Capgras can feel overwhelming. Here’s one caregiver’s raw, honest look at chaos, weariness, and hope.

08/13/2025

When the medicine meant to help… doesn’t.
My loved one with Lewy Body dementia just had hip surgery. I warned the doctors (several times!) about anesthesia and meds that can make LBD worse. They nodded, smiled… and still gave him an opioid.
The next 24 hours? Calls from the nurses, an ER visit, and some truly ridiculous “care plan” options from the doctor.

If you care for someone with LBD, you need to know: certain meds can make symptoms spiral—and quickly.
💡 Carry this free LBDA medical emergency card so you can skip the explaining and get straight to protecting your loved one.

👉 Read my story + get the card here:

Lewy Body dementia and medications can be a dangerous mix. Here’s what caregivers need to know to protect their loved ones before, during, and after surgery.

08/12/2025

Hey, anybody out there dealing with a loved one with Lewy Body Dementia AND Capgras syndrome?

I’m curious, do you notice any trends in your loved one’s behavior when the Capgras Syndrome escalates?

Here is why I’m asking…in our household, when my LOWLBD + CS is having difficulty with my identity, he phones family and friends, and will go to neighbors and friends houses asking if they know where I am, or if they have seen me (Spoiler alert — I’m at home). Anyway, when he can’t find/identify me as me, he gets agitated and starts going down the rabbit trail of cognitive decline, anger, frustration, delusions, etc..

So, I’m curious — do you notice any trends in the behaviors of your loved with with LBD + CS, when CS rears it’s ugly head?

08/09/2025

One day we’re strolling by the ocean, feeling almost normal. Two days later, my loved one with Lewy Body Dementia is calling people to ask if they’ve seen me — while I’m sitting right next to him. Life with Capgras Syndrome is a moving target… but sometimes, love finds its way back through the fog. 💜 Read the full story here ➡️

Capgras Syndrome in Lewy Body Dementia can turn you into a “stranger” overnight. Here’s my real-life story of confusion, questions, and love returning.

08/07/2025

🐢 Back to Normal (Sort Of) — One Sketch at a Time 🎨
It’s been a while since I’ve had the time — or the peace of mind — to just draw. But today? Today felt a little like the old “us.”

Now that my LOWLBD has a brand-new hip (and is back to running like a champ), we made our way to one of our favorite places: Montaña de Oro. He ran. I drew. And for a few lovely hours, life felt... normal again.

This little sea turtle was my companion for the afternoon. 🐢💙 Slowly taking shape one layer at a time, just like we are.

Caregiving, surgeries, dementia — it all takes a toll. But sometimes, even a short return to a familiar rhythm can feel like breathing again.

If you’ve been carrying heavy things lately, I hope you get a “Montaña de Oro moment” sometime soon. One step, one sketch, one deep breath at a time. 💛

[Feel free to share if you’re coming back to something you love too.]

08/06/2025

💙 Introducing The After Workbook: A Gentle Guide Through Life After Loss 💙
When a loved one dies, grief takes many forms. But it’s not just the emotional weight that can feel overwhelming—it’s also the thousand practical decisions you’re suddenly tasked with, all while still trying to catch your breath.

As a caregiver who has faced loss and complicated decisions, I understand how difficult it can be to navigate the aftermath. That’s why I wrote The After Workbook: What to Do After a Loved One Dies—One Gentle Step at a Time.

This workbook is here to walk beside you during those first, hard days and through the long road of settling someone’s affairs. Inside, you’ll find simple checklists, forms, and comforting support, including:

✅ A step-by-step checklist for the first 48 hours
✅ Help with death certificates, funeral arrangements, and legal terms
✅ Guidance on notifying agencies and closing accounts
✅ Space to reflect and pause during your grieving process

But there’s more. I know that when the surviving spouse has dementia or a disability, things can get even more complicated. The After Workbook includes special sections to help you navigate these extra challenges with care and understanding.

This isn’t just about checking off to-do lists—it’s about meeting you where you are: grieving, human, and doing your best.

You don’t have to figure everything out today. Take it one step at a time. The After Workbook is here to guide you.

Available now on Amazon. 💙

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06/23/2025

🧠💭 What’s the Difference Between Alzheimer’s and Dementia?
(And why does it matter so much to know?)

Dear hearts, let’s clear something up that confuses so many caregivers (because goodness knows I was one of them at first!):

👉 Dementia isn’t a disease—it’s a symptom.
👉 Alzheimer’s is a disease (and it’s just one of over 100 that can cause dementia).

Think of it like this:

A fever is a symptom... the cause might be the flu, COVID, or a good old-fashioned cold.
Dementia is the symptom... Alzheimer’s, Parkinson’s, or Lewy Body might be the cause.
Getting a proper diagnosis matters, because not all dementias are created equal. Some are treatable. Some are progressive. Some come with movement issues, some don’t. Some bring hallucinations, and others show up quietly.

And here’s the kicker—some things that look like dementia (like a UTI, sleep deprivation, depression, or vitamin deficiency) might actually be reversible. But you have to know what you're dealing with to treat it.

📋 I wrote a blogpost that lays it all out:
– Common types of dementia
– Reversible causes to rule out
– Why diagnosis matters

🎁 Read it here 👉 https://livingwithlewy.net/whats-the-difference-between-alzheimers-and-dementia-and-why-it-matters-to-know/

With love, tea, and truth,
Nora Poppins
(LivingWithLewy.net – Hope, Help & Humor for Dementia Caregivers)

06/14/2025

Why is my loved one acting so self-centered?”
You’re not alone if that question has quietly crossed your mind during your dementia caregiving journey. Maybe they’re demanding. Maybe they seem cold or impatient. Maybe it feels like they’ve forgotten how to care about you.

Here’s the hard truth:
Dementia doesn’t cause narcissism—but it can cause behaviors that look an awful lot like it. The brain changes in dementia often turn down empathy, social awareness, and patience… and crank up the confusion, fear, and survival-mode demands.

💔 It’s not selfishness. It’s neurological.

In my latest blog post, I’m serving up a hot pot of truth and understanding to explain:
✨ Why these behaviors happen
✨ How to cope when they hurt
✨ And what to remember when you feel invisible in the storm

🫖 Pop on over for tea and truth:
👉 https://livingwithlewy.net/is-it-narcissism-or-dementia-understanding-self-centered-behavior-in-your-loved-one/

And tell me below, dear hearts—have you wrestled with this? You’re not alone. 💗

Wondering if your loved one with dementia is acting narcissistic? Learn why dementia can cause demanding or self-centered behaviors—and how to cope with compassion.