Tips to organize your care giving life - #1 The Medical Information Binder
I, like everyone, had a full busy life full of wonderful and challenging things --family, pets, job(s), chores, hobbies, personal care, goals and aspirations. Then one day, I had to quickly start to engage and manage the care of my father. I was OVERWHELMED! and the answer (for me) --is to GET ORGANIZED (make a list/write it down!). I'll share the critical things to organize and document, and share what worked for me. This is the first of several posts that will give you tips on getting ORGANIZED in order to save your sanity and not be overwhelmed!
THE CHALLENGE: I saw immediately when taking Dad to the doctor, that Dad's condition did not allow him to properly address the doctor's questions and that I didn't know the information as I hadn't cared for him previously to the level of detail that was needed. In addition, when running from work, to pick up dad, to go to a doctor, then a pharmacy, then drop dad, and run home to resume my life, I needed something organized and at my fingertips (both paper and digital) to reference and update at any time.
THE SOLUTION: THE MEDICAL INFORMATION 3 RING BINDER .
THE VALUE: (a) It is very helpful to me to have access to accurate information at my fingertips in my iPhone or in this printed binder. (b) it helps provide doctors a better picture of the situation and could eliminate wasteful re-tests as you switch from doctor to doctor to address an emergency issue, and also help provide a baseline to refer to old scans/tests a year later or so, because you can see where that scan is on file, (c) Share with your key family members as co-care takers or helpful back-up (d) and God-Forbid I am unexpectedly out of the picture completely, someone can seamlessly pick up the binder and help my dad without any (or many) gaps in care.
How to create this important binder:
THE BINDER: - Take a 3 ring binder (I got bright green so it is different and easily recognizable, it has the clear cover so you can slip a piece of paper in it to make a cover). I made a cover that had large letters "IMPORTANT MEDICAL FILE for xxx put name here" *always use your loved one's full legal name that matches their state ID/Medical insurance on every page/document** Fill it with several of those handy plastic pockets with tabs. Contents should include what is listed below. Have a few extra pockets for new things, as this is a 'living-fluid' process and you will have to be ready to adjust and update.
Tool: I used a combination of Microsoft Word/Excel, took a pretty word document template and table of contents. Created a Header that has your loved one's full legal name and birth date, the footer has the 'last updated date auto fill' and page number.
Privacy: I found it best to keep in mind when creating these documents to categorize them and focus one 'topic' on each page. (such as Credit card/financial, Home, Automobile, Medicine, POA etc.). This way you pull the paper that is helpful to share IN THAT SITUATION, without sharing extra information that is not needed for that situation. If asked for social security number, I ask "is that truly necessary or can you use something else to identify ".
Content includes two types of things in two formats (printed/digital): (a) 3 ring binder plastic pockets - where you slip in printed documents and (b) an "INFORMATION SHEET" which you need to type up/create.
Deep Dive into Contents:
DOCTORS' Info Sheet: List every single medical professional you have interacted with, include Pharmacies too, or provider of medical supplies. Table headers include: Specialty (i.e. Dentist, Neurologist, etc), then Name, Address, Phone, Website & Details. In details I might put 'visited on xxx, or 'long-time regular doc last seen in 2015, Scan on May 2019..). you will find this SO valuable to reference. This will help doctors also to limited re-ordering tests that have been recently done, or access a scan from prior years for comparison/base line purposes. Trust me, you will never remember all these details, write it down!
MEDICINE Info Sheet: Again--make a stand-alone one sheet table. Top: Year, your persons FULL name (that matches the ID/Medical insurance) and birth date, and title 'Medicine History". My columns have "Date Started, Frequency, Medicine Name (in this box I put all details : Donepezil HCL (aka Aricept) 10 mg tab, 1x daily @bedtime). Next Column is: Cause/illness, then Prescribing Doctor/Hospital. After I list the 4-5 regular medicines my dad has, there is a 2nd section at the lower part of the page that was short-term medicine to treat illnesses (same columns, but has start/end dates) Now that 2019 is over, I will make a new fresh sheet, and start with his daily medicines, leaving the illness chart blank so I can hand write in anything that crops up in 2020. I will keep 2019 chart in the book for reference.
CONTACTS #1 of 3 - ID CARDS Info Sheet: I took all of dad's important cards from his wallet, copied front/back, and made a PDF of them too. One print out is in this book. They should include any of these: Drivers License/State ID, Veteran ID card, Medical Insurance Card, AARP Card, Drug Card, Medicare Card, Credit Card, Dental Ins, Drug Insurance. Again, think about how you might need to use them, and separate/organize them, ID card and medical stuff was on one page. Vet and credit cards on a separate one.
CONTACTS #2 of 3 - FAMILY Info Sheet: Type of a list of yourself and all family members (even out of state) that should/could be contacts, along with multiple ways to contact them such as home address, cell phones, home phones, emails. **put next to their name in red type if they are POA for Financial or Medical.
CONTACTS #3 of 3 - Professional Info Sheet: Professionals I met and engaged with as part of my role in caring for dad, includes Doctors and medical professionals, Social Worker, The Veteran's Center, the senior centers, Assisted Living Places, the Pharmacy, etc. All Business cards. I took a couple card stock papers, tape business cards to them (sorta organized by category) -- then once full, slipped them into a "3-ring sheet protector' plastic sleeve. Keep them all. Some seem unrelated, but as time goes on, you will find yourself in a situation and remember you already know someone with a solution--it's in your book!
DAD'S Information Sheet:- Name and home address for insurance/legal purposes, Temporary address as of (date) xxx, Social Security #, Driver License Info, Vehicle Info (year, make/model, VIN, , plate, expiration dates for plate, emissions, registration). Auto Policy, Life Insurance policy, Medical Policy, Dental, drugs, Medicare/Medicaid, AARP supplemental, etc. LIST ALL of these ID #s, companies, phone #s/websites. (yes you have copies of the cards, but this is handy in this format also).
MEDICAL HISTORY Info Sheets 1 and 2
Current Medical History #1 of 2: Listed dates and issues that we had experienced, along with results, doctors/hospital names. This is very current / this year and more detail-oriented than #2.
Medical History #2 of 2: This is more Historical and Overall Status oriented: I listed major organs, general info on the status of said organs and any activity that I know about from anytime in dad's life-time. Add any info on lifestyle, such as Allergic to, smoker, drinker, etc. be honest. Examples: Heart - diagnosed with xxxx in the 1990's by Dr. xxxx, (contact info). EYES: Used to wear glasses, then stopped in the 80's. 1990's Cataract surgery in both eyes, NYC, Retinal Detachment, sometime in 90's. Eye Exam on xxx, saw Dr. xxx, (address, phone) --received good status on eye health, was recommended for a prescription of xxxx. Refused to get glasses. Dad's Father had xxxxx, died at age xxx of xxxxx etc.
Medicine Pocket/Tab Put the prescriptions info tags into this pocket.
Emergency Room Pocket/Tab - paperwork you have from any emergency room trips--you leave with several important pages and it is helpful to look back to get a phone # or specific info to help a doctor if something is recurring, or history is helpful to a current situation.
Legal Papers (Pocket/Tab) - Put in here the Power of Attorneys Organ Donation pre-directives. Also if a veteran, put the DD-214 honorable discharge. The Health Care Instructions and Advanced Directives. If you any of these items referenced here, it is important to make that a priority to get prepared and notarized. Important to clearly mark the original (with a post-it note)--and never give away the original. My bright yellow post-it says "Original--KEEP". On the copies, you can write 'copy' on top page upper right corner.
DIGITAL VERSION: important so you can access it anywhere
On my computer and phone --I created contacts for many of the doctors. Then I create contacts for Dad such as DAD's INSURANCE -- and in the notes in that contact is all his ID numbers, DAD'S PHARMACY, DAD'S DRUGS, DAD's Caretaker, DAD's Automobile, Dad's Numbers (social, vet id, etc...) Dad's NEIGHBORS, Dad's Ploy Guy, Dad's Electric, Dad's Water, and on and on.
Emergency Medical Packet --PDF it at Staples, and you can save it on your phone as a PDF, and in the icloud. Then you can read/look at it where ever and when ever you need it! If you can't get to staples, there are free apps that create one continuous PDF's out of a series of photos (Genius app is one of them). You could also email the PDF to two additional Key Family members --marked 'important: keep on file", and if there is a lawyer relationship, good for them to hold on to it too.
Power of Attorney Documents - Medical and FInancial - Make two separate PDF's and file them digitally on your phone, icloud, etc. You will run into situations where it is important to be able to share this document on their own. You will need access to these often, and it's helpful to be able to email them out on the spot (such as at a doctor's office), or show it to them on the spot (such as during an emergency at the hospital.)
Creating the Medical Binder - The hardest part is getting started, but once you invest the time to create this binder, it is easy to keep it up. I had to search my dad's house, files, wallet to get the information. once it was done, updating it was easy! I left lots of white space on all my INFORMATION PAGES , and hand-wrote in all the new stuff **Important: Date all your comments as you add them.
Refreshing the Medical Binder - Now that 2019 is over, and I'm writing about my nice organized book, but in reality it is not longer a nice organized book. It currently is a mess of handwriting and papers shoved in, so obviously it's time to pull up the word doc, update it from my notes, and get it all fresh and organized for 2020!
Some links to additional articles on this subject:
Most valuable link with more tips for creating a medical binder: https://www.sonashomehealth.com/tips-organizing-older-adults-medical-history/
DIGITAL SUPPORT/APPS for information/support/ organizing details for care giving