The LBD Caregiver’s Medical Notebook

Jan 20

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I still cringe thinking about an appointment with yet another specialist. I sat there stumbling over medication names, dosages, test dates and results, all the time feeling like a failing student in the principal's office.

I asked why they didn’t already have the information from Ed’s medical records online. “Your husbands records are on a different system then the one we use.”

What?

The reality is not all medical portals “communicate” with each other. While the medical community tries to catch up, it means

we have to bridge the info gap.

5 Reasons You Need a Medical Notebook

I now have everything in one place and you should too.

It keeps all of the important health information, like medical history, medications, allergies, test results, and contact details, organized in one place.
It’s a fact, being organized reduces stress and saves you time.
With everything in one place you’ll be able to have better, focused conversations with your healthcare team. You’ll also feel more confident with everything at your finger-tips.
You can track medications, symptoms and treatment plans and be ready to discuss when you meet with your doctor.
In an emergency you’ll be able to quickly provide essential medical details to first responders or healthcare professionals.

7 Essential Sections and Why They Matter

1. Quick Reference Sheet

This is your "grab and go" page, a one-page medical summary. Mine sits right in front of the binder in a plastic sleeve. In an emergency it helps the on-call doctor quickly understand Ed’s diagnosis, current medications and any medication sensitivities.

Pro Tip: Carrying a binder all of the time doesn’t always make sense. You can make multiple copies and keep one in the car and give others to family members for emergencies. Another option is to scan or take a photo to keep on your smartphone.

2. Medical History

LBD is a journey with lots of twists and turns. The medical history helps you remember where you’ve been and when. You can start with a simple timeline of symptoms, diagnoses, and any major health events. Add to that any additional details that will help you when talking to doctors.

3. Current Care Plan

Medications change. Dosages adjust. Therapies come and go. Keeping this information current is key especially if you have help taking care of your loved one. You can just pull it out for them while you’re away.

4. Provider Information

You'd be surprised how often you need to coordinate between doctors. At minimum that usually means providing them with phone numbers and locations of other providers or your insurance. Having these details saves precious time.

Pro Tip: When possible, take a few extra business cards from each of your providers. Keep them in a business card holder in your three ring binder. Then just hand them out when someone needs the information.

5. Doctors Appointments

Every visit with your healthcare team is important. Prepare for your visit by writing down all of your questions ahead of time. It’s so easy to forget them when you’re already stressed. Then during the appointment you can get the answers you need. Also, this is the time to document their answers and outcome of the visit, like changes in meds and the reason for the change. This becomes part of your medical history.

Pro Tip: Our neurologist appointments can be lengthy and frankly a bit stressful. I asked our doctor if I can record our meetings using an app on my iPhone. She had no issues at all. When I got home I used a transcription app that coverts voice to text so I could add it to the journal.

6. Symptoms Log

Patterns emerge over time like a new sleeping pattern or change in how they walk. I start tracking any subtle shift or change, even if it seems minor at the time. This helps identify triggers or underlying issues with our doctor to adjust the care plan accordingly. It's like having a roadmap of what works, what doesn't and the progression of LBD.

7. Legal Documents

The last thing you want during a crisis is to be scrambling for paperwork. Keep copies of everything - power of attorney, advanced directives and insurance cards - in one place. Trust me, you'll thank yourself later. This is another good use for photos on a smartphone as a backup - I n case of an emergency.

Getting Started

I know it can be overwhelming but you don't need to build your notebook overnight. Ours has morphed over time from a simple notebook to my current system on my Mac and iPhone.

Create a system that works for you. Binder with handwritten notes, a digital journal using an app or maybe a combination of both. It just needs to be something you’re comfortable using and keeping current.

To help you get started, I’ve created the Caregiver’s Lifeline, a simple PDF that you can download and start completing right away.

Tips From My Experience

Keep it simple at first - you can always add more detail later
Don’t try to do it all at one time, but do get it done
Take notes during appointments - memory fails all of us
Make it portable - something you can take with you when you need it
Have backups of important documents in a safe place

As you complete each section, give yourself a high-five, you deserve it!

Your Next Steps

Download your own copy of Caregiver’s Lifeline
Start with the Quick Reference Sheet first
Gather your basic medical documents along with results from any tests
Set aside time each week to organize and complete each section
Make updating your binder part of your regular routine

This system has saved me countless hours of stress and potentially dangerous situations. Start building yours today - your future self will thank you.

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.