Caregiver Tips

Information Gathering

• Educate yourself on the disease, treatment options, clinical trials and probable progression of the disease.
• If you don't understand something, ask and keep asking until you do understand.
• If you are feeling overwhelmed, wait for another time.
• Talk to your physician to get an expectation of how long before your care recipient will have to quit working.
• Locate government agencies and learn the procedure to apply for services that can offer financial support (disability), personal care assistants and other supportive services.
• Apply months before they are needed.
• Understand your medical insurance and the procedure you will have to follow to get assistive devices that are covered by insurance.
• It is always best to start this process months before they are needed,  because it may be denied and the appeals process is lengthy.

Getting Organized

• Get all of your "papers" in one safe place - certified copies of birth certificates, marriage certificate, divorce decree, voter registration, vehicle registration and title, social security card, military identification and discharge orders.
• You will need legal documents such as a will, power of attorney for healthcare, power of attorney for property, life insurance policies, bank statements, and a listing of all financial accounts.
• Begin an address book with all family and professionals (doctors, plumber, automotive repair, electritian, etc.)
• Begin your own medical record of the care recipient, including a list of all procedures with dates and all medications (include over the counter.)
• You should get copies of the medical record whenever you see a specialist or go for a test. If the request is made by the primary care physician, there is usually no charge, so offer to pick it up and copy it before delivering it to the primary care physician.

Develop A Plan

• Discuss with your care recipient what issues are more important to him or her, such as staying in his or her own home.
• It is impossible for you or the physician to know what is going to happen, therefore impossible to know what you are going to need and when. You and your care recipient have never done this before, and rightly so, do not know what to expect. Develop a plan that is both flexible and realistic.
• Have a back-up plan, because you do not know who you will be able to count on.

Ask for Help

• Some friends and family will not be able to handle this, and will not help out. This is a painful truth. But there are others who you would not expect to come through for you and they will surprise you. There will be some who may be hesitant because they have no idea what they can do.
• Make a list of those you think will be willing to help.
• Make a list of very specific tasks and ask each of them to select what they are willing to do. (Keep in mind your male friends who can do house maintenance.)
• Keep this list next to the phone, so when someone asks you what they can do, you will have a quick response.
• Teaching others how they can help will relieve some of your burden, and those friends will be so relieved that they were able to help out. You both win.

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