Caring for Rare Disease Caregivers

A Guide for Family Caregivers of Loved Ones with Rare Diseases

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    • Ask for help and accept it.

    • Set up respite care on a regular basis.

    • Make a list of all the support people that are able to help you out, such as other children, parents, neighbors, and friends.

    • Make a list of the tasks that could be done by other people, such as providing care or running errands.

    • Find out about the home health care services in your area.

    • Talk to a trusted friend or family member.

    • Encourage your loved one to do as much for themselves as possible. This will not only help you, but help your loved one to feel more in control.

    • Give yourself permission to grieve the losses in your life that you experience.

    • Learn to say "no" to things you do not want to do or that are not really necessary.

    • Take care of yourself.

    • Eat a well-balanced diet.

    • Drink enough water and other fluids.

    • Exercise regularly.

    • Go to regular checkups at the doctor and dentist.

     

     

    Coping with Role Overload

    Take Care of Yourself 
    Help is Not a Dirty Word
    Getting the Help You Need
    Lifting Your Loved One Safely

    What Can I Do...

    ...About My Own Disturbed Sleep?
    ...To Help My Fatigue?

    How Do Caregivers Cope With...

    ...Their Time Demands?
    ...Role Overload?

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