Most mornings on my way to work I drive down a quaint, tree-lined street with an apartment complex where three generations of one family live. The patriarch, my patient, has multiple chronic medical problems, including high blood pressure, and has become forgetful over the years. When I met him several years ago, he was living alone in a small house, but he was no longer able to cook for himself and frequently forgot whether he had taken his medication. After some discussion, his family agreed it was no longer safe for him to live independently, so they helped him move into one of those apartments with his son. His daughter-in-law, who brought him to his medical visit a few months later, was happy to report that my patient now eats a healthier diet, watches his salt, and has help taking his medications. When she and her husband are not available, a daughter who recently moved into the same complex takes over meals and medication supervision along with her teenage daughter, who likes to visit her grandfather after school.
Over the years, I've heard many stories about how families divvy up tasks to ensure the safety and well-being of patients who wish to continue to live with them. Some members help with bathing and dressing, while others supervise the medication schedule or take care of housekeeping activities such as preparing meals and shopping for groceries. Others pitch in by doing the laundry or accompanying their loved ones to doctors. Some families function incredibly well, while others resent those not pulling their weight.
Every year, family caregivers—who comprise about 40 million Americans—provide about 37 billion hours of unpaid help. Many deliver this care while working full-time jobs and raising their own families. About 32 percent of family caregivers provide at least 21 hours of care a week. People like my patient's children are part of the "sandwich generation"—people who care for their aging parents and their own children at the same time.
When my father was recently ill, my brothers and I teamed up to share duties. One of my brothers took over joint financial oversight, another met with our parents' attorney to create power of attorney privileges and review legal documents, and I organized all the medical information, including doctors' names, contacts, medical records, and medication lists.
In this issue of Brain & Life, our Caregiving story, "Share the Care," showcases families who distribute the caregiving load so that each member has a role to play. You'll learn how families collaborate and what to do if someone does not step up and help. By the way, distance is no excuse to hang back. In my family's case, it was actually the sibling who lived farthest away—and in another country—who volunteered to stay for two weeks and work remotely when my father was first discharged from the rehab center.
According to AARP research, the number of potential caregivers is shrinking. In 2010, there were seven potential caregivers aged 45 to 64 for every person over 80. By 2030, this ratio is projected to decrease to four caregivers for every one person over 80, which will make it even more important for families to work together.
Whether you are a caregiver, a person with a neurologic condition, or someone who is interested in the nervous system, I want to thank all of you for your feedback on our newly renamed magazine. The overwhelming majority of readers liked the redesign, but some were concerned that the new name meant we would no longer cover diseases affecting muscles, nerves, and the spinal cord. Rest assured that is not the case. We remain committed to providing information about the entire spectrum of neurologic problems. Look out for our upcoming issues and visit BrainandLife.org. And, as always, please continue to send us your opinions.
Orly Avitzur, MD, MBA, FAAN
Editor-in-Chief
