09/28/2020 by california caregivers
Caregivers of elderly loved ones face heavy emotional, physical, financial toll
Nearly four years after her longtime partner’s death, Michelle Murphy still wakes in a panic, imagining that she forgot to help him breathe.
At 61, Jeffrey Senne was diagnosed with amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease. Murphy had become his main financial support and caregiver in their woodsy Northern California home. She ended up devoting 11 years to looking after him. As the disease progressed, Senne, who Murphy says once looked like Harrison Ford, grew bald and frail, lost control of his bowels and could no longer speak or swallow. To prevent him from suffocating, she would have to wake up at least every two hours to suction the saliva pooling in his mouth.
“I was terrified that he’d die on my watch,” she says.
Hypervigilance often comes with the job for the more than 17.7 million Americans who care for older and disabled family members. So does stress, anxiety and long-term harm to the caregivers’ physical and financial health. In recent years, the work of caregiving has been lasting longer and becoming more complicated — and as America’s population ages and becomes more disabled, many more of us will be taking it on. Although state and local governments have begun to try to lighten the burden, they could and should be doing much more, experts say.
“Many people know there’s a reasonably high possibility they’ll occupy this job at some point, but they have no idea how profoundly it will affect their lives,” says Richard Schulz, a psychiatrist at the University of Pittsburgh and a national expert on family caregiving. In a recent article in the Annual Review of Psychology, Schulz and four colleagues reviewed the research on family caregiving for the disabled and ill elderly, outlining the enormous toll on caregivers and potential ways to help them.