Caring for Rare Disease Caregivers

A Guide for Family Caregivers of Loved Ones with Rare Diseases

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    • Try to identify what "triggers" your anxiety.

    • List coping strategies that have helped in the past.

    • Talk with others, such as a support group or online forum, about your anxiety.

    • Continue to gather information about your loved one’s particular rare disease and its treatment. Knowledge of what is going on can help relieve anxiety.

    • Engage in activities that you find pleasurable and distracting, such as listening to your favorite music.

    • Use relaxation techniques, such as controlled breathing or guided imagery. For example, imagine a pleasant scene in your mind.

    • Surround yourself with friends if it is relaxing.

    • Use prayer or other types of spiritual support, such as meditation.

    • Talk with your health care provider about prescribing medicine to help reduce your anxiety.

    • Get a massage. Massage therapy can relieve your tension and help you relax.

    • Express your feelings and concerns to others.

    • Limit your caffeine intake. Try to decrease your intake of coffee, soft drinks, tea, and chocolate as these all contain caffeine.

    • Avoid alcohol, which can increase anxiety.

    • Exercise can help reduce tension. Try walking or yoga.

    • Get help caring for your loved one so you can have some time to yourself. Remember, caregiving is more than a one-person job.

    • Ask your health care provider for a counseling referral if these tips are not helpful.

     

     

    What Can I Do About Anxiety?

    Complex Emotions
    Caregivers and Depression
    What Can I Do About Anger?
    What Can I Do About Anxiety?

    "Life After Loss"

    Relieved and Guilty
    Who Am I Now?
    Refueling Time
    Grieving for Years
    Moving On

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