After Jennifer’s father died in 2014, her once-active mother, who is now 78, went into a tailspin. She was depressed. She started drinking much more than her usual afternoon cocktail and wine with dinner. She rarely left her house. The signs of early dementia that had gone unnoticed became more pronounced.
Jennifer, who lives in suburban Boston — more than 1,000 miles away from her mother’s home — and her far-flung siblings visited their mother regularly, but when she suffered repeated falls, that no longer sufficed. After considerable cajoling, she moved in with Jennifer and her family last year.
Jennifer, who asked that her full name not be used, coined a reassuring mantra to get through stressful days: “I want to be able to look in the mirror for the rest of my life and say, ‘I did the best I could.’”
Jennifer has found a local internist for her mother and manages medications she takes daily for anxiety, depression, high blood pressure, cholesterol and a thyroid condition. She has helped her mother reduce her drinking considerably but can rarely persuade her to leave the house. She is installing an accessible shower and grab bars and has removed area rugs.
Aging Baby Boomers will need caregivers
In caring for an aging parent, Jennifer is doing what adult children have always done. She is one of more than 40 million family caregivers nationwide, according to AARP, including 844,000 in Massachusetts who care for elderly relatives. Aging Baby Boomers, who had fewer children than their parents, are expected to dramatically increase the demand for caregiving.
Increased longevity, complex health needs and early hospital discharge make family caregiving more challenging than ever. AARP and United Hospital Fund, in their 2012 Home Alone report, found that 46 percent of family caregivers performed nursing tasks, such as caring for wounds, managing medications or operating mechanical ventilators. In Valuing the Invaluable, 2015 Update AARP reported finding that 55 percent of caregivers felt overwhelmed.
Growing support for family caregivers
Public and private organizations are beginning to explore and address the needs of family caregivers. A 2018 report from the Institute for Healthcare Improvement (IHI), No Place Like Home: Advancing the Safety of Care in the Home, offers new recommendations, strategies and tools for effective and safe care of patients in their homes.
AARP developed and advocated for the CARE Act, which requires hospitals to include family caregivers in discharge planning and train them in the medical tasks they will be expected to perform. It has been approved in 39 states and territories; in Massachusetts it went into effect in November 2017. The new Family Caregiving Institute at the Betty Irene Moore School of Nursing at the University of California/Davis will conduct research, disseminate information and augment training of nursing students on the challenges of care for patients at home.
“Nationally, we have made very little investment in the people doing the care, whether it’s the family caregiver or the home health aide,” says Robyn Stone, Dr.P.H., Co-Director of the LeadingAge LTSS Center @UMass Boston and member of the expert panel that informed IHI’s upcoming report. “We need good training and education. We should help family caregivers know and understand the challenges they’re facing and how to address them and get the support they need."