Practical tools for caregivers
Tools for an organized caregiver
Here are some ideas for simple tools that may help you in your role as caregiver – you may choose paper versions of these items or find that electronic/app versions work best for you:
- A folder or organizer to maintain the patient's Personal Health Record (PHR)
- A notebook/journal in a convenient size to keep with you for notes and tracking things such as symptoms, medication schedules and any other things you’d like to share with the care team members
- An updated medication list
- A calendar or other way to record appointments, family schedules, caretaking schedules, etc
Types of notes to keep
The notebook or journal is used to keep track of information such as symptoms, concerns and questions for your care team.
You can take notes in this notebook/journal during medical visits so you have a record to look back on. The patient summaries offered by the doctor’s office may not catch the nuances of answers you receive that are specific to the patient’s care – and having this information captured in your notebook is often helpful to look back on.
As an illness progresses, you will have more things to keep track of and remember. The notebook helps ensure this information is recorded accurately and will not be forgotten.
Why you should keep an updated medication list
It’s easy to assume in this day and age that your care team automatically has the latest information related to a patient medication list. But a serious illness often requires frequent medication changes, and those changes may be made by multiple doctors and in multiple health care settings such as hospitals and outpatient settings.
Did you know?
A serious illness often requires frequent medication changes, and those changes may be made by multiple providers and in multiple health care settings such as hospitals and outpatient settings.
Sometimes, communication delays and rapid prescription changes mean not every provider has the most up-to-date information. Your provider may prefer you bring in your medication bottles so they can note not only what you're taking but also do a pill count. You may choose to bring the actual prescription bottles to appointments, keep a written or typed list somewhere you can access and update it regularly, or take advantage of an online app for a smartphone or tablet to keep the medication list updated. Remember to make note of not just the prescription names but also the dosages.
Maintain a personal health record (PHR) for the patient
Patient information is often referred to as a personal health record or PHR. Your loved one may already be keeping this information in some format. As their illness continues to progress, chances are good they will need help maintaining this information. In addition, the information should be made available to you as the primary caretaker in the event of an emergency.
Did you know?
One of the most important things you can do as a caregiver is help the patient keep track of their illness by tracking their appointments, their health wishes, health records and medications.
You can create and maintain your PHR using a variety of methods. Some people prefer paper, some electronic, and some a combination of both. You can keep this information in any form that works best for you. It doesn’t have to be pretty, it just has to work for you.
The most important thing about the patient PHR is that it is kept up-to-date at all times. Select a place to store the file that is logical to you – where you can grab it quickly in an emergency or on your way out the door to an appointment – and select a way to quickly and easily keep it up to date.
Checklist of information to include in a patient PHR
Access to the patient’s medical record
One of the first conversations you may want to have with the patient you are caring for is asking them for permission to access their medical records. You’ll also want to generally understand the HIPAA (Health Insurance Portability and Accountability Act) rules and requirements for accessing medical information.
Read more
There's a lot to unpack and learn when working through the sharing of personal medical information. You may want to start at the U.S. Department of Health and Human Services HIPAA FAQ website.
Talk to the patient about what they’re comfortable sharing, with the understanding that the more information you can access, the more you can help track their needs. Once you’ve had the conversation, talk with the palliative care team about the documents and permissions required to share the patient’s health information.