This week Suzanne Geffen Mintz, president and co-founder of the National Family Caregivers Association, sat down with NPR’s Terry Gross to discuss issues that complicate family caregiving and helpful resources for family caregivers.

The conversation begins as they explore the confusion most family caregivers struggle with when their loved one is discharged from the hospital. “Discharge planning is a misnomer,” Mintz said. “There needs to be a more comprehensive way of helping families make the transition from hospital to home or home to hospital.” Handling these transitions can be stressful on the family caregiver and the patient, especially when caregivers have to take on roles as a caregiver that can be unfamiliar and frightening.

Because of her experiences giving care for her husband, who was diagnosed with multiple sclerosis in 1974, Suzanne has recently wrote the book, “A Family Caregiver Speaks Up: ‘It Doesn’t Have to Be This Hard.’”

When asked what help she needed when her husband was discharged, Mintz said she needed her husband’s doctors to communicate with each other. This would have eased the confusion and helped her collect the fragmented information about his health history. She recommends family caregivers be proactive and keep records for their loved one’s doctors. So the clinician has a full picture of the patient’s situation.

“But I don’t think that all the help that [a] caregiving family needs is something that can be provided, or should be provided by the health care system,” Mintz said. “I think we need to return to the image of barn building, where neighbors and family come together and help each other.” Asking for help can be difficult, and Mintz acknowledges that sometimes family caregivers don’t know what to ask for.“ Some of the things we need help with are standard items,” Mintz said. Caregivers need to be able to define the help they need, such as going to the grocery store, pick up the kids from soccer practice, shoveling the snow in the winter, and mowing the lawn in the summer. AGIS’ Family CareGroups can greatly help with coordinating volunteers. It offers a master calendar where caregivers can invite their family and friends to sign up for activities such as running errands, preparing and delivering meals, or providing rides.

Mintz also discusses Home Health Care Agencies, emotional needs for caregivers and understanding how different people deal with caregiving and difficult situations. This wonderful program is available for you to listen to at NPR’s website.

Filed under: Caregiving, Doctors & Hospitals, Health & Safety, Home Care Agencies, Long Term Care