Caring for Rare Disease Caregivers

A Guide for Family Caregivers of Loved Ones with Rare Diseases

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    Crisis Symptom Reporting Guide

    When your loved one is in a medical crisis, your ability to observe symptoms carefully and report accurately might be, quite literally, lifesaving. But it is a challenge to function clearly in a time of crisis. Here is a list that will help you remember what to look for during a crisis. You may want to read it ahead of time, and then tuck a copy in your patient file for later reference.

     

    • What time did the problem start?

    • What was he/she doing when the problem began?

    • Do you know or suspect what might have caused the problem?

    • What was the first symptom that you noticed?

    • What other symptoms/complaints do you remember?

    • Did the symptoms come on abruptly or gradually?

    • Was he/she given any medication or medical treatment just before the problem started? If so, what was it?

    • Did the patient say anything about how he/she felt when the problem started and/or as it progressed? What was it?

    • Does he/she have a history of this kind of problem? If so, what was the previous diagnosis?

    • What did you do to try to help him/her between the time the problem arose and the time you arrived in the ER or the doctor’s office? Did something work well? Seem to make things worse?

     

    When to Call for Help

    When is a crisis a crisis? When should you call someone else for help? Get help when your loved one is in some kind of medical distress and you are not sure what to do. Call your local rapid-response number (e.g., 911 in the US or 112 in the EU) or an ambulance if the person you are caring for:

    • Is unconscious

    • Has unexplained chest pain or pressure

    • Is having trouble breathing or is not breathing at all

    • Has no pulse

    • Is bleeding severely

    • Is vomiting blood or bleeding from the rectum

    • Has fallen and may have broken bones

    • Has had a seizure

    • Has a severe headache and/or slurred speech

    • Has pressure or severe pain in the abdomen that does not go away

    • Is unusually confused or disoriented

     

    Also Call for Help If

    • Moving the person could cause further injury

    • The person is too heavy for you to lift or help

    • Traffic or distance would cause a life-threatening delay in getting to the hospital

     

    This is a list of general issues to consider.

    For more specific information contact your physician.

     

     

     

    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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