Caring for Rare Disease Caregivers

A Guide for Family Caregivers of Loved Ones with Rare Diseases

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    What Can I Do About My Own Disturbed Sleep?

    Here are some tips that other people have found helpful for not getting enough sleep:

     

    • Establish a sleep routine by going to bed and getting up at the same time.

    • Schedule your sleep schedule around your loved one’s sleep schedule, if possible. If they take a nap during the day, take a short nap at the same time.

    • Use your bed for sleeping only.

    • Maintain a quiet, comfortable and consistent bedroom temperature.

    • Do not eat heavy or large meals or do strenuous activity closer than four hours before going to bed.

    • If you are hungry, try snacks at bedtime with warm milk.

    • Try a radio, fan, or mood music to filter out noises (e.g., nature sounds, ocean, etc.).

    • Get some form of exercise every day, such as walking.

    • If sleep medications are prescribed, follow directions carefully.

    • Try taking a warm bath an hour before going to bed.

    • Try to deal with problems or worries during the day, before going to bed.

    • Avoid drinking caffeinated drinks after 3 p.m., such as soft drinks, hot cocoa, tea or coffee.

    • Practice relaxation, meditation, or guided imagery.

    • Do not drink alcohol.

    • Avoid tobacco products altogether. Nicotine is a stimulant.

    • If you can find someone to give you a backrub or foot massage to relax, go for it.

    Here are some tips for sleeping too much (more than 12 hours per day):

    • Get some exercise every day, such as walking.

    • Reduce or eliminate caffeinated beverages.

    • Do not drink alcohol.

    • Go to bed at the same time each night.

    • Use distraction (hobbies or other activities that take your mind off caregiving) to avoid boredom.

    • Set your alarm to get up at the same time every morning, caregiving permitting.

    • Avoid sweets and foods high in sugar.

    • Avoid foods high in tryptophan.

    • Avoid dairy products.

    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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