Caring for Rare Disease Caregivers

A Guide for Family Caregivers of Loved Ones with Rare Diseases

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    The single most important thing you can do to function effectively as a caregiver is to create and maintain a comprehensive file of information about the person you are caring for. There are many ways to create and maintain a patient file. Some people prefer paper, some electronic, some a combination of both. You can keep this information in any form that works for you, although most people simply put it in a binder or folder. It doesn’t have to be pretty; it just has to work for you. The important thing is that it provides easy access and can be efficiently updated and shared when needed.

     

    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. Keep it up to date. An outdated file won’t do you much good when you are standing in the emergency room at midnight!

     

    What should go in the Patient File?
     

    • Patient's medical history

      • Diagnosis

      • Physician Contact Information

      • Allergies

      • Health history (e.g. surgeries, other medical conditions)

    • Medication List

    • Insurance Information

      • Private medical insurance

      • Prescription plan

      • Government Provided Coverage

      • Long-term care insurance

      • Dental and Vision Insurance

    • Legal Documents

      • Living Will

      • Durable power of attorney for Health Care (also known as a Health Care Proxy)

      • Power of Attorney for Finances

      • Contact information for patient's lawyer

    .

    Patient File Checklist

    Caregiving Right Now
    Learning to Think Like a Care Manager
    Patient File Checklist
    Going to The Doctor
    Medication List
    How to Communicate Symptoms​
    Crisis Symptom Reporting Guide
    Technology Can Help Caregivers

    When Keeping Your Loved One at Home Means Bringing In Help

    What Is Home Care?
    Getting Started with Home Care
    Questions for Home Care Providers
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