How to Build a Strong Support Team While Caring for Someone with LBD

Feb 5

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In my corporate life, I learned one essential truth: no successful project runs without a strong team. Little did I know how crucial this lesson would become when facing Lewy Body Dementia (LBD).

After months of trying to handle everything alone, that old corporate wisdom kicked in: I needed my team.

Just like in business, I knew I needed people who could fill three critical roles: knowledge experts, helping hands, and cheerleaders. My daughter, a nurse practitioner, became my medical translator, breaking down complex reports into actionable steps. Our son and grandson turned into my home maintenance crew, handling tasks that were 'above my pay grade” like cleaning gutters. And my lunch dates with two close friends became my sanctuary - where I could be me, not just a caregiver.

The truth is, building a support system isn't just helpful - it's essential. If you're feeling overwhelmed right now, take a deep breath. You don't have to figure this out all at once. What matters is taking that first step, whether it's reaching out to family or connecting with others who understand what you're going through. Let's talk about how to make that happen.

Why LBD Caregivers Need a Different Kind of Support

If you've ever tried explaining LBD to someone who's only familiar with Alzheimer's, you know that blank look. "But isn't dementia just memory loss?" they ask. Those of us in the LBD world know better.

Caring for someone with LBD is like riding a roller coaster - some days are steady, others throw you unexpected loops. One morning, your loved one might be alert and engaged; by afternoon, they're struggling with basic tasks. It's this unpredictability that makes our need for support unique.

Unlike other types of dementia where decline follows a more predictable path, LBD keeps us on our toes. We're not just dealing with memory issues - we're managing physical symptoms, cognitive fluctuations, and sometimes vivid hallucinations. Each day brings its own challenges, and that's exactly why having the right support system isn't just helpful - it's crucial for survival.

Think about it: who helps when your loved one has a bad day and can't get out of bed? Who do you call when you need to understand a new medication? Who listens when you just need to vent about the frustrations of dealing with healthcare providers who don't understand LBD?

Building Your Inner Circle: Start Small

Getting started is often the hardest part. Here's what worked for me: I started by making a list of people I thought might be open to helping - family, friends, neighbors. But instead of immediately asking for help, I took a more thoughtful approach.

When sharing the news about LBD, I learned to watch and wait. People often need time to process this information - it's not like telling someone about a broken arm or the flu. Sometimes they don't know what to say at first, and that's okay. I gave them space to absorb it, to come to terms with what this meant for someone they care about.

Over time, something special happened. As people became more comfortable with the situation, they'd often ask, "How can I help?". That's when having my mental list came in handy. Instead of giving a general "Oh, anything would be great" response, I could match their offer with a specific need.

For example, when my friend Sarah asked how she could help, I was ready with "Would you be up for having lunch with me once a month? I could really use some regular gal time to be me and not talk about caregiving." Being specific made it easier for her to say yes - or no - because she knew exactly what she was signing up for.

With family, the dynamic was a bit different, but the principle remained the same. I gave them time to process the diagnosis, then gradually involved them in specific ways that matched their abilities and availability. Our son is great with home maintenance, so that became his role. Our daughter's medical background made her perfect for helping decode medical jargon.

Here's what I've learned:

Be patient. Let people process the news at their own pace
When asking for help, be specific about what you need
Always make it clear that "no" is an acceptable answer
Match tasks to people's natural strengths and abilities
Remember that people often want to help but don't know how

Expanding Your Support Network

The saying "it takes a village" isn't just for raising children - it's just as true for LBD caregiving. While family and close friends form your core support, there are times when you need specialized help or perspectives from people who truly understand the LBD journey.

There's nothing quite like connecting with other LBD caregivers who just "get it" without lengthy explanations. Today, Grace another LBD caregiver, is only a quick text or phone call away and once a month we have lunch together. Often we’re laughing over something that only another caregiver would understand and find humorous. No one get’s it like she does and I’m thankful to have her friendship.

Expand your network with a "professional support team." This could include:

Your neurologist, who specializes in LBD and takes the time to explain things clearly. Finding the right doctor makes a huge difference. Someone who’s willing to listen and is available to answer questions. Our first neurologist wasn't the right fit for us, we kept looking until we found one who was.
A pharmacist who knows about LBD medication interactions can be an unexpected but crucial ally, especially when new medications are prescribed. They take the time to check for potential issues and explain things in plain English.
Local community resources - you’d. be surprised to learn about services that exist.They can be a goldmine of information about everything from respite care to transportation services.

You don't have to build your network all at once. Start with what you need most right now. For me, that first step was joining an online support group where I could ask questions at 2 AM when sleep was impossible. Later, as our needs changed, I added other resources.

Remember, professionals are used to being asked for help - it's literally their job. You're not bothering them by reaching out. In fact, most appreciate having an engaged caregiver who asks questions and seeks to understand. And if they make you feel like you are bothering them, move on, find someone who will be helpful!

This is your team and you can vote them out if they aren’t a good fit for you.

Making It All Work

When I first started getting help from others, I quickly realized I needed a way to keep track of who was doing what and when. It's one thing to have support - it's another to manage it efficiently without driving yourself crazy in the process.

Start with a simple: shared calendar for family members to see appointments and coordinate help, if you need it. Nothing fancy - just a basic Google Calendar that everyone could access from their phones. This way, when you schedule a doctor's appointment or therapy session, they can check to see if they're available to help.

For daily tasks and routines, create what I call my "second brain." It's just a notebook with essential information:

Daily routine and medications
Important phone numbers
Common issues and how to handle them
Where to find important documents

This turned out to be incredibly helpful when our daughter stepped in to help one day when I wasn't feeling well. Instead of trying to remember everything to tell her, I just handed her the notebook.

TIP: Signup for my newsletter below and get the Caregiver’s Lifeline. It’s the perfect place for key information and a great start to your own “second brain”.

I also use technology to my advantage. OK, I admit it, I’m a bit of a nerd. There are some great apps out there, but I stick to what's simple and actually useful:

A medication reminder app on my smartphone
A shared notes app where family members can update each other
A group chat for quick family updates and coordination

One of the most helpful systems I've put in place is what I call my "regular check-ins." These aren't just random calls for help - they're scheduled touchpoints:

Monthly lunch dates with the ladies
Weekly calls with our daughter about any medical concerns and to just catch up
Regular “honey do” list visits from our son

This routine keeps everyone involved and helps me avoid feeling like I'm constantly asking for favors. Plus, having these regular touchpoints means small issues don't become big crises.

Taking Care of Yourself Isn’t Selfish - It’s Necessary!

Let's address the elephant in the room. I used to feel guilty about needing time away, about asking for help, about feeling frustrated or overwhelmed. Sound familiar?

Here's what finally clicked for me: I can't be a good caregiver if I'm running on empty. The same is true for you. At first, this felt selfish. But then I realized something important: Ed gets better care when I'm rested and recharged and not bitchy and tired.

Here are some signs you need to watch for:

Feeling irritable over small things
Having trouble sleeping (beyond the usual caregiving interruptions)
Forgetting things you normally remember easily
That heavy feeling of just being overwhelmed

When you notice these signs, it’s time for you to take action instead of pushing through. It could be as simple as meeting a friend for coffee. The key is not waiting until you're in crisis mode.

Here's some ideas that might work for you:

Regular lunch dates with friends where you talk about anything but caregiving
Getting out for a walk
Taking time to read or garden - I love to paint
Actually accepting help when it's offered instead of saying "I'm fine"

The guilt doesn't completely go away - I'll be honest about that. But you need to learn to talk back to it. When that guilty voice pipes up, remind yourself that taking care of yourself isn't a luxury - it's part of being a good caregiver.

Conclusion

I never imagined those team-building skills I developed so long ago would become so crucial in my personal life. But here's the thing: building a support system while caring for someone with LBD isn't just helpful - it's essential for both you and your loved one.

I'll leave you with this: you don't have to do it all at once, and you definitely don't have to do it alone. Start small. Maybe it's making that list of potential helpers. Maybe it's joining an online support group. Or maybe it's just admitting to yourself that it's okay to need help.

And if you're reading this feeling overwhelmed, remember this: reaching out for help isn't a sign of weakness - it's a sign of wisdom. After all, even Superman had the Justice League!

Ready to take that first step? Pick just one thing from this article that resonated with you and act on it this week. Whether it's calling a friend for lunch or starting your own "backup manual," that single step can be the beginning of building your support network.

Remember, we're in this together. And sometimes, knowing you're not alone makes all the difference.

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IMPORTANT: This website is informational only and does not provide medical advice, diagnosis, or treatment. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.