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1.
Become educated about the disease. The more you know about the disease, the more empowered and the more comfortable you will feel with role changes. Ask as many questions as you need to when you are in appointments. No question is a stupid question, and all questions are important.
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2.
Take care of yourself. As flight attendants say, “You must put on your own oxygen mask before putting on the mask of another.” This philosophy stands for caregiving. If you are unhealthy emotionally, physically or spiritually, you will be of no help to any one else.
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3.
Practice healthy living. You are much more capable of being a help to others when you eat a healthy, balanced diet, exercise regularly, are involved with your own interests and get enough sleep.
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4.
Stay social. Connecting with others in similar situations is powerful, because you no longer feel isolated and you can learn from others. In addition, make sure you maintain other important relationships such as with children, family members and close friends.
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5.
Accept help. As difficult as it is to ask for help from others, realize that you need a break and that others may want to help. You do not have to do it all, nor is it healthy to do it all. The best way to avoid burnout is to accept help. People often want to help; just ask.
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6.
Acknowledge your emotions. If you are feeling hopeless, worthless, helpless, sad, anxious or fearful, acknowledge these emotions. These are all normal reactions to your situation.
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7.
Allow for healthy expression of your feelings with each other. Just because you are now a caregiver does not take away the fact that you had a relationship with this person in the past. You are still a spouse, partner, child, etc., and with that comes the responsibility to speak respectfully and openly. Should difficulties arise, seek couples or family counseling. Your multidisciplinary physician team will have a list of qualified mental health professionals.
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8.
Allow for caregiving holidays. This simply means taking some time away. You will be a better caregiver to your loved one if you do so.
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9.
Encourage healthy independence of your loved one. Help your loved one be as independent as possible for as long as he or she can. This may involve assistive devices or new technologies, so seek these out.
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10.
Seek help through your local organizations. Each territory or state has its own society or organization dedicated to a specific disease. You can find these in the United States by typing in the National (insert disease) Association of America in an Internet search engine.
