Some of us are finding ourselves in a place where we are becoming the primary caregiver to an aging parent. Or you might be responsible for a family member with a disability. Or maybe you have a child with a complicated medical history. Or it could be that you are (or would like to be) just a very prepared and organized person in general. If you struggle to remember specific events or to locate the medical information for your loved one, it may be helpful to keep medical records and other important things in one place. Many caregivers find a care notebook to be the best way of keeping everything organized. Think of it as a 1-stop shop containing everything that family, doctors, therapists, and members of their school or care team would need to know. It’s simple and easy to carry to appointments or any other places you go with your loved one. It can even be kept on a tablet or phone.
Since Scott and I have a child with a disability the links in this post will be geared to children with special needs but you can adapt these any way you see fit. Click here for a care notebook from the Exceptional Children’s Assistance Center (ECAC) that we have found most helpful!
A care notebook is a place to keep:
Medical records
Medication dosage and schedules
Treatment plans
Important phone numbers
Notes from doctor’s visits
Hospital stays
School or elder care strategies and contacts
Transition plan
Developmental checklists
Other key information for caregivers, doctors, therapists, and others who work with your loved one
How Do You Get Started?
Make a list of the things you refer to most, such as reports from doctors, lab results, vaccine records, care plans, hospital stays, etc. Remember to include information most often needed by doctors, caregivers or respite providers, and others on your loved one's care team.
Decide how you want to organize it. We found that a printed copy in a 3-ring binder works best for us. It allows others access to the information. A printed notebook is also useful when caring for an aging parent because it can be left in the home for first responders if your loved one is unconscious. You may prefer a virtual care notebook on your laptop, tablet, or smartphone. Check out these health tracking apps.
- Caremap developed by Boston Children’s Hospital is a secure place to put the most critical information about your child’s health, emergency care, allergies, and medical history. It is shareable with family members, teachers, and caretakers. For Apple devices only.
- Medical ID is a standard Medical ID that could be used for teens and young adults to take an active role in their health care. It is available for Apple or Android phone and keeps records of medications, doctors, and emergency contacts. While this is not a complete record, it is a good basic summary with links to medical records. It is designed to be used by the cell phone owner.
- Child Health Tracker by Healthy Children (a branch of the American Academy of Pediatrics) is handy because it stores your child’s medical information, healthcare providers, and a medication tracker. It also has information from AAP about immunizations and more. For Apple devices only.
- epsy is a free seizure tracker for epilepsy. It helps you track and manage seizures, triggers and medication for more clarity in everyday life. It is HIPPA compliant and a great tool to share important information with your child’s neurologist. Do what works best for you and your family.
Photocopy important papers such as a medical power of attorney, a living will or advanced directive, or a do not resuscitate (DNR) order to put into the binder for reference, but keep the originals in a safe place.
If you have any questions about your specific care notebook, please reach out to your health care provider.