Caring for Rare Disease Caregivers

A Guide for Family Caregivers of Loved Ones with Rare Diseases

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    Going to the Doctor

    You may want to accompany your loved one to doctor’s appointments. This way, you and your loved one can work together as members of the health care team and ensure that you both understand the recommended medical course of action. This is an especially important role if your loved one is cognitively impaired.

     

    If you are caring for a child, you may want to consider having both parents attend medical appointments if possible, or bringing other adults who are involved in the child’s daily care. When all the caregivers are aligned and involved in the doctor’s visits, the opportunities for misunderstandings, resentments and confusion about the care plan can be diminished.

     

    Before the Visit

    • Write down all questions or any concerns you might have so you don’t forget them. This will help you state them clearly.

    • Regardless of how insignificant you feel the doctor may think it is– ASK!

    • Identify current symptoms. Use the symptom-reporting guide.

    • Update the patient file and medication list.

      • Be sure to include all medications, over the counter drugs and supplements.

    • Call to confirm appointment.

     

    During the Visit

    • Clearly report all of your loved one’s symptoms; don’t try to diagnose the problem.

      • Both the loved one and the caregiver should report symptoms because they might perceive different symptoms.

    • Bring the updated medication list.

    • Ask your questions and write down the answers.

    • Take notes – write down the doctor's instructions.

    • Discuss recommendations. Make sure you understand the doctor’s recommendations.

    • Verify next steps, such as lab tests, follow up appointments, etc.

     

    After the Visit

    • Review your notes.

    • Check prescriptions.

    • Discuss the visit with your family.

    • Update your calendar.

    • Call for test results.

    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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