Adapted from contributors Rick Lauber, Fern Pessin, Janice Trott, Kimberly Whiter, Lindsay Perrin, and Christina Best.
Download the free caregiver workbook by clicking here.
What is a care binder, and why should you make one?
A care binder is a critical organizational tool to keep track of everything related to caregiving duties and your loved one’s care needs.
Family caregivers can find it very comforting to have everything needed in one place. A caregiving binder can also help a family caregiver reduce stress and save time by not having to search for something and be more prepared for appointments with healthcare, legal, banking, and other professionals by having necessary information immediately at hand.
A care binder evolves with time as your loved one’s care needs grow or change. Additionally, a care binder can be a useful benchmark to track changes in medication, behavior, and important tasks as things shift throughout the care journey.
“Care planning is a living and breathing process, not a static one to be set every six months and forgotten until the next meeting,” says contributor Lindsay Perrin. “Care planning is what allows me to focus on what matters most for Dad day-to-day, week-to-week, and month-to-month – helping Dad live the best life he can while Lewy Body tightens its grip,” says Perrin.
“It won't take long before you are drowning in papers,” says contributor Kimberly Whiter.
“After each doctor visit you will leave with a printed summary of the event. In the mail you'll get paperwork to re-register or how to prepare for things. Each new therapy brought on will require intake forms, where you keep a copy. Each medication comes with instructions and education. Paper, paper, paper...without a system, important information will be lost or you won't be able to find it quickly if needed. Every story, even a health story, belongs in a book,” says Whiter.
The caregiver job description
We know caregivers gain plenty of skills during their caregiving experiences, so much so that it deserves a spot on your resume and LinkedIn profile. But really, what is the caregiver's “job description?”
Here are a couple definitions and meanings from our trusty contributors.
“A family caregiver is a keeper of stories, a master navigator, an expert organizer, a talented juggler, and the wearer of many hats,” says Whiter.
Author Rick Lauber adds, “family caregivers can assume many new and unexpected responsibilities including booking appointments, driving, paying bills, downsizing and moving, and helping with physical care (bathing, dressing, toileting, feeding, and medication dispensing). A family caregiver’s range of roles can be wide. They can simply pick up necessary prescriptions from the pharmacy or oversee a dependent adult’s complete care plan.”
“It's important to note that work provided by family caregivers is often unpaid work (contrary to paid caregiving work provided by healthcare professionals). As well, family caregivers do not always have the necessary professional background or experience to help them.”
According to Lauber, “the best family caregivers are patient, good communicators, active listeners, organizers, researchers, delegators, and time managers. They must also be trustworthy, gentle yet firm, attentive, and problem solvers.”
Perrin jests, “If I were to sit down and write out the job description of a family caregiver, inclusive of all the responsibilities and daily tasks the job requires, the output would be similar in length to the Dead Sea scrolls or one of those receipts we all get when checking out at CVS.”
In Perrin’s case, the headings on the job description would likely read something like this:
- Help Dad find fulfillment and purpose.
- Keep Dad safe.
- Ensure people see Dad and not just a disease.
- Make sure Dad is comfortable.
Supplies & getting started
Start with the basics and most important information first. It may feel like a daunting task, but will hopefully become a helpful organizational tool to save you time and stress down the line.
- A zippered binder (rather than a standard binder) made with quality material and pockets will provide more safety and security so important contents will not fall out. Why not choose a brightly-colored binder, attach favorite photos to the front cover, or dream up a creative name for it? This can make it more conspicuous and even more fun!
- Detailed information about your loved one’s care needs
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Different colored page dividerscan easily separate different areas (e.g. “Health”, “Personal History”, “Financial”, “Legal”, “Housing”, etc.). Family caregivers will need to flush out each category and include as many details as possible.
- Taking the “Health” category for example, this can include the care recipient’s diagnosed health condition(s), family doctor’s name and contact information, medications prescribed (with dosages), dosage history (was the medication prescribed only once or is it being taken on an ongoing basis?), side effects noted from prescribed medications, allergies, previous operations (along with dental surgeries) and operation dates.
- Don’t overlook the apparently obvious details. A person’s birthday and birth year, for example, may be easily forgotten during stressful times. Original documents may be saved to reduce damage and may be replaceable with photocopies/scans.
- Some form of identification or copies for the care recipient (e.g. a driver’s license) which may be asked for.
- A calendar can be helpful to schedule and note booked appointments.
- Page protectors can hold important documents which need to be seen/shown to others (e.g. a power of attorney, advance directive, organ donorship card, and/or a person’s birth certificate). Heavy-duty page protectors can be a better choice to purchase. They may cost more but will last longer than flimsy ones.
- A writing pad or some blank loose leaf paper can be useful for jotting down reminders, observations made during visits, questions to ask, caregiving “to-do” lists, or shared information from others.
- 3-hole puncher.
- Highlighters or colorful pens, pencils – use pencil for items that may need to be updated.
- Printed templates from our downloadable guide.
- Miscellaneous items like extra pens, a calculator, an extra cell phone charging cord, and a granola bar (to stave off hunger when waiting for appointments becomes necessary).
What information should go inside?
Think about all the aspects of your loved one’s care that you’ve ever had to search for, keep track of, or explain to someone. If it’s something you need to remember, make a tab for it!
- Activities of daily living and observations.
- Bowel movement, condom catheter, urination logs.
- Caregiving task list or a to-do list.
- Cleaning/household sanitization.
- Cough assist, bi-pap.
- Current conditions.
- Family and personal.
- Feeding tube procedure/nutrition.
- Financial.
- Glossary of terms.
- Health and diet.
- Health history.
- Helpful articles and resources.
- Hospice information.
- Hoyer lift instructions/procedures.
- Important and emergency contacts.
- Insurance information.
- Legal.
- Lists of care providers.
- Medications and dosages.
- Morning routine.
- Nap-time routine.
- Nighttime routine
- Payment tracking for caregiver help.
- Physical therapy information.
- Procedures.
- Range of motion exercises and instructions.
- Required supplies.
- Schedules.
- Showering, toileting, and bedtime routines.
- Training instructions.
- Transportation procedures/directions.
- Upcoming appointments/procedures.
How to use our downloadable care binder guides
We recommend downloading and printing our ready-to-use templates. Feel free to use any or all of the guides that best fit your caregiving needs. Watch this YouTube tutorial by Caregiving.com's Sarah Trott with step-by-step instructions and explanations.
Here’s a list of the included templates and brief descriptions on how to use them:
Caregiving task list
- Use this comprehensive list to document caregiving tasks across all facets of your caregiving: personal care, nutrition, financial, medical, and more.
Daily notes
- Keep track of day-to-day tasks and reminders.
Task list 1
- Prioritize and check-off completed tasks for specific times of day or activities.
Daily task list 2
- Sort and manage daily tasks by priority level and check-off when completed.
Caregiver time card
- Keep track of caregiver scheduling, start and end times, and care notes.
Medication list
- Make note of all medications, dosage, frequency, and re-order status.
Training instructions
- Write step-by-step instructions as a “how-to” reference guide.
- This template can be useful for all moderately complex tasks in case someone other than the primary caregiver needs to step in with caregiving duties.
Contact list
- Keep track of important contact information, names, organizations, emails, and phone numbers.
- Transfer contact information from your cell phone or email in case someone needs access to this information without the help of the primary caregiver.
- Examples: hospice, pharmacy, emergency contacts, family members, caregivers, physical therapist, chaplin, and community resources.
Safety checklist
- Inspect the safety of your loved one’s home with this comprehensive home assessment checklist. Make note of any needed repairs or hazards.
- Adapted from this article with more information and instructions.
Calendar
- Use this monthly calendar template to fill in important dates, reminders, appointments, scheduling, and more.
Assessing your strengths
- Use this checklist to complete an honest assessment of your caregiver strengths, and discover what tasks could be delegated to other trusted resources.
Appointment log
- Use this template for doctor appointments and make note of the date, provider, symptoms, changes, medications, questions, concerns, and take-home notes.
Assessing your needs checklist
- Use this checklist to understand what resources would make this stage of life easier and more supported for you as a caregiver.
What does life look like right now?
- Create a benchmark assessment of your loved one’s current abilities.
- Make note if tasks can be completed independently, independently with help, or only with help. Make note of conditions as normal, mild, or major issues.
- Revisit this checklist every few weeks, months, or as needed if major changes occur.
UPDATED SEPTEMBER 2022