Caregivers will become casualties without support
Several years ago, I met Gregory, a Bay Area man diagnosed with hypertension, obesity, gout and depression — all in the same year. In his small Bay Area suburb, friends and neighbors regarded him as funny, sharp and spirited. But that changed when he became caregiver to his 83-year-old mother battling advanced Alzheimer’s disease.
Gregory shared his story over coffee, tears running down his face, as he mournfully described how caregiving robbed him of his friends, humor, independence — and now his health. He felt privileged to be his mother’s caregiver, but admitted feeling isolated, unsupported and totally exhausted. But the worst part, he said, “There’s very little relief.”
The nation needs to prioritize greater resources for the
1 in 5 Americans who are family caregivers. We need to improve access to respite care, regular health checkups and training in both basic and complex care. This needs to be a national priority.
Almost 45 million Americans are caregivers, including 1 million in the Bay Area. Every day, they help loved ones with basic needs, including feeding, wiping, bathing, dressing, lifting and medicating. They often leave everything behind, including their jobs and personal lives, to dedicate more than 40 hours per week. Eventually this exacts a brutal toll.
Family caregivers are more likely to suffer heart disease, diabetes, anxiety and depression. It’s common for caregivers to be diagnosed with multiple chronic conditions attributable to prolonged stress. And the combination of exhaustion, stress and debilitating illness impairs the quality of their caregiving, forcing many to resign their caregiver roles, only to never fully recover. They become “caregiver casualties.”
Today’s caregivers often provide increasingly complex care. According to AARP and National Alliance for Caregiving, half of family caregivers perform tasks typically performed by health care professionals, including dialysis, mechanical ventilation, wound care and injections. Fear of medical error creates profound anxiety in the untrained caregiver. This is compounded by the unease of managing pain relief, especially during a national opioid crisis.
Most are ill-prepared for this work. I was unprepared when, before I started my medical training, I cared for my mom, who was battling end-stage kidney failure.
We health professionals can reduce the burden by training caregivers before shifting complex responsibilities to them. We also need to ensure they have time for self-care. About 2 in 3 Bay Area caregivers report high levels of stress and no time for themselves.
Like us, caregivers need time to exercise, eat healthy, see their health providers and even watch one or two Netflix shows. Ensuring access to respite services is essential to protecting caregivers’ health.
In the Bay Area, caregivers often feel resources are inadequate. Many support programs are limited to counseling, requiring referral to contracted agencies for additional services, including skills training and respite. Few of those programs staff their own nurses.
California needs a one-stop shop, a place where caregivers can access all the services they need — or, even better, a full suite of services that goes to them. One solution is to create a publicly funded caregiver relief program, deploying registered nurses to provide caregivers relief.
At the homes, nurses could teach caregivers how to manage pain, administer IV medications, dress a wound or start tube feedings. Nurses could also assess the caregivers’ physical and emotional health. Most importantly, nurses could provide caregivers with a much needed break — a time for self-care.
Sure, funding presents a challenge. But it should be weighed against inaction, the impact of a diminishing supply of caregivers for an aging, chronically diseased demographic.
If we don’t make changes, we all risk becoming caregiver casualties like my friend Gregory.
Bobby Antalek is a Bay Area native. He has a master’s degree in public health from UCLA and he is a family nurse practitioner candidate at Emory University in Atlanta. He has worked for San Francisco Department of Public Health and UC San Francisco. He was a caregiver for more than 10 years to his mother, an end-stage kidney failure patient.