With progressive diseases such as Alzheimer's, family members - including Former First Lady Nancy Reagan and former U.S. Supreme Court Justice Sandra Day O'Connor — gradually do more and more to help a loved one.
But often a stroke, heart attack, hip fracture, or car accident can more suddenly thrust you into the caretaker role. Then what? Some tips:
Plan ahead. "Deciding what to do is an ongoing process and should involve many conversations with loved ones," says family-care consultant Melissa Kahn. "It's not something a family or an individual can figure out in one conversation." Don't wait for an emergency. "That is the wrong time to be making important decisions," says Kahn. "With an aging population, it's not a matter of if we're going to be dealing with it. It's a matter of when we're going to be dealing with it."
Meet the hospital social worker. Sometimes called the case manager or care manager, this professional works with the family to coordinate a discharge plan for rehabilitation, a visiting nurse to manage medications, and continuing care services, says Kahn. Don't feel as though you need to be the caregiver on your own.
Join support groups. Many hospitals offer them for the patient - and for the caregiver. "It isn't just about emotional support," says Kahn. "It's often about getting information and becoming educated and empowered. [Other members] often share information that if you're isolated in your home, you're not going to hear."
Choose a family leader in decisionmaking. "Decide who might take charge in terms of being the information gatherer," says Bob Bua, president of Genworth's caregiving division, which, along with the AARP, helps families identify care providers, figure out their needs and create a care plan. That person can get the opinion of a "care advocate." (Since relatives often disagree on what treatment is best, they can benefit from this neutral expert.) An advocate can step in to help arrange homecare, personal care, and companion services. "You really should talk to an expert, just like you would with a doctor or lawyer," says Bua. The advice might be to try meals on wheels or to get mom into a daycare setting a couple days a week.
Figure out finances. "When mom moves from receiving physical rehabilitation after a hip fracture, she is suddenly off Medicare or her Blue Cross or Blue Shield program," says Bua. "She needs help with activities of daily living. She needs help getting dressed every morning and making sure she gets to the bathroom safely...[But] Blue Cross and Blue Shield doesn't pay to have a person help mom button her sweater."
Take advantage of free resources. Visit the Family Caregiver Alliance's National Center on Caregiving, which, among other things, provides tips from caregivers themselves. (Buy a pill organizer. Label drawers with what goes inside them. Leave a sign on the front door about things to be checked before leaving the house.) And the U.S. Department of Health and Human Services' Administration on Aging runs a caregivers' support program. (Last year it spend $154 million on it.) The site provides an eldercare locator and links to other programs.
For more stories about caregiving, read: