En español | Four years ago, Sandra Gilmore, 66, moved back into her childhood home in Sewickley, Pennsylvania, to take care of her 90-year-old parents. Her mother has dementia, congestive heart failure and diabetes. Her father is hard of hearing.
Once she left them for a week with around-the-clock care to go to Disney World with her grandson and his parents. Other than that, Gilmore says she only leaves her parents to make short trips to the grocery store or to pick up takeout.
"There's definitely a little anxiety when I leave them,” she says. She also admits to getting frustrated at times, too. “When I find myself getting testy and losing my patience, I need to put myself in time-out for a while.”
Gilmore, a retired nurse, says, “You would think I would be totally prepared for this. No, not even close. Nothing prepares you for this. It's a whole different ballgame. It's like steadily going down a dead-end street.”
When the pandemic hit, Gilmore and many other unpaid family caregivers across the nation faced a daily struggle to preserve their mental health. Now the crisis is taking its toll on them.
A recent report based on a nationwide survey from the Centers for Disease Control and Prevention (CDC) about the types of mental health challenges people are facing during the pandemic found that nearly 31 percent of unpaid family caregivers, like Gilmore, reported seriously considering suicide in the preceding 30 days, compared with the 11 percent of the other adults taking the survey who were not caregivers.
Unpaid family caregivers also reported having more symptoms of depression and anxiety, and starting or increasing substance use to cope with the stress of COVID-19 on top of caring for their loved ones, compared to the other respondents. The survey was administered from June 24 to 30 and included almost 5,500 adults.
Only 4 percent of adults in 2018 had serious thoughts of suicide, according to a 2018 national survey on drug use and health by the Substance Abuse and Mental Health Services Administration (SAMHSA).
For help, contact:
• National Suicide Prevention Lifeline: 1-800-273-TALK (8255)
• Veterans Affairs Caregiver Support Line: 1-855-260-3274
• AARP Support Line: 1-877-333-5885
This new data has mental health experts concerned about its ripple effects.
"We don't really know how many people go from suicide ideation onto suicide,” says Rajeev Ramchand, senior consultant for epidemiology and suicide prevention at the National Institute of Mental Health.
However, “even thoughts about harming one's self suggest significant despair and distress. It's noteworthy and concerning, and we should pay attention to it because it could be indicative of future suicide,” says Ramchand.
However, he cautions that “what we don't know is if during normal times caregivers have higher suicidal thoughts."
Heidi Donovan, codirector of the National Rehabilitation Research and Training Center on Family Support at the University of Pittsburgh, says, “Caregiving is hard in the best of times. Everyone is aware of that. I think the compounding effect of the pandemic is making the job more physically, emotionally and financially difficult.”
A lot of the services available for caregivers, such as respite and home health care, have been affected by the pandemic. With only online social support available, experts worry that the isolation of caregivers can make the situation worse.
Gilmore says, “Now I have very little social life. I always enjoyed a monthly dinner break with friends, and now I don't have that small outlet."
The survey also indicates that unpaid caregivers are doing worse over time. Experts say this is worrisome.
"I think that we as a society and as individuals need to rally around those people we know that are family caregivers. They can't care for their loved ones if they're not first caring for themselves,” says Donovan.
Susan C. Reinhard, a nurse and senior vice president and director of the AARP Public Policy Institute, says feeling alone and having no choice in caregiving can be additional major stressors on unpaid family caregivers.
Most unpaid family caregivers say they don't have a choice, and half of them are very stressed, according to the report "Caregiving in the United States 2020” by the National Alliance for Caregiving and AARP.
Seventy-two percent of people who say they feel alone as an unpaid family caregiver say they have high emotional stress, according to the study.
"A lot is going to depend on how long someone is giving care, but when you feel you have no control in life, or when you feel stuck, that is a big ordeal,” says Reinhard.
"All of us need to think about family caregivers. You need to reach out to them. People experiencing caregiving have no emotional energy to call you,” she says.