Dorristene Branham got divorced when her only child, Constance Dunlap, was a few months old. For years it was just the two of them.
Branham eventually remarried but after her husband died in 2006, mother and daughter found themselves together again in Branham’s West Hartford, Connecticut, home. Now, Dunlap says, "my best friend is slipping away from me."
Branham, 73, has been diagnosed with dementia; she is incontinent, relies on a walker and is considered a fall risk. "I have a chair alarm and a bed alarm, and I get very hyper every time she moves," Dunlap said.
Caring for her mother full time is "a day-to-day challenge," Dunlap said. "Some days I feel like I’ve got the hang of this, and some days I feel like ‘what have I done? Why am I getting punished?’"
Dunlap is part of a vast legion of family caregivers helping an aging relative or an adult child with disabilities manage daily life at home. Fifty-three million Americans provide unpaid care to another adult, most of whom are older than 50.
"We know that unpaid family caregivers are and really always have been the backbone around our nation’s long-term support," said Anna Doroghazi, director of advocacy and outreach for AARP Connecticut. "Those unpaid services are what keeps people alive and living in the setting of their choosing,"
Caring for a vulnerable senior at home can be financially and emotionally challenging, and the largely female workforce receives little government help.
A new proposal, part of President Joe Biden’s $2.25 trillion infrastructure plan now before Congress, aims to change this.
"This is the so-called sandwich generation," Biden said on the campaign trail last year. "It includes everyone from an 18-year-old daughter caring for a mom who suddenly gets sick to a 40-year-old dad raising his child and caring for his own aging parents. The joy and love are always there. But it’s hard."
Last month, Biden outlined a plan to spend $400 billion to support family caregivers. The proposal would be paid for by higher taxes on corporations.
The funds could be used to cover home visits from nurses, respite care and home repairs and modifications, among other services and programs that help keep older Americans out of nursing homes.
Biden has not released details of how the money would be dispersed; the idea faces strong opposition from Republicans in Congress. But even without specifics, Biden is bringing new attention to the role of family caregivers. The Democratic president has characterized caregiving as "human infrastructure’' deserving of government support.
"Family caregivers and in-home caregivers are taken for granted until the system fails and then there aren’t very good choices," said Sheila Molony, professor of nursing at Quinnipiac University and a fellow of the Gerontological Society of America. "It’s just like a bridge. We may not think much about it until it starts to fall down and then we’re like ‘oh my goodness, why haven’t we invested money in this. We’ve waited until it’s crumbled.’"
A cultural shift
Biden’s initiative is indicative of a change in the way caregiving is perceived, said the AARP’s Doroghazi. "Historically, we do not do a great job acknowledging or valuing caregiving … for people of any age," she said. "I think there’s been a cultural shift in the last 10 or 20 years about how we talk about parenting, about how we talk about the labor that goes into being a mother or being a father and how valuable that is, but we’ve never collectively done a great job of acknowledging or valuing labor that is not paid with money."
The coronavirus pandemic has shed light on shortcomings in the American system of elder caring. Across the United States, more than 183,000 residents and staff of nursing homes and other long-term care facilities died of COVID-19. But even before the pandemic, surveys show that many older adults would rather live at home than in an institutional setting.
In most cases, families are expected to work out the details on their own, without government support, said Sade Dozan, senior director of development for Caring Across Generations, a national group that advocates for paid family leave, child care and long-term care.
"That mentality was always a huge barrier," Dozan said.
Pat Lang of Newington cared for both of her parents and her husband before their deaths. "When my mother was dying, I told her, ‘You’re very lucky. God waited until I was retired so I could help take care of you,’" said Lang, who worked in pharmaceutical sales before retiring early at 62.
When Lang’s father reached his late 90s, he, too, needed help with daily tasks. Lang helped her brother, who worked from home while caring for their father.
Lang, who is now 77, also cared for her husband when he was diagnosed with a fast-moving, and ultimately lethal, type of prostate cancer.
With help from hospice and her stepson, unemployed at the time, she also kept her husband home. "Nobody wants to go into a nursing home or a hospital," Lang said.
Some caregivers must chose between helping an elderly family member and their own full-time job. One in five family caregivers report a high level of financial strain; 45% experience financial impact, according to AARP.
Connecticut has a number of programs that provide support to at-home caregivers, said Christy Koval, of the Alzheimers Association of Connecticut. But more is needed to help the 80,000 people in the state with the illness, or another form of dementia, 70% of whom are cared for at home. "Any expansion of the home and community-based system would be a benefit," she said.
Constance Dunlap is grateful for the assistance she gets to help pay for 20 hours of respite care a week for her mother. But that isn’t enough to allow Dunlap to take a full-time job.
When friends and acquaintances ask Dunlap, a former substitute teacher, why she can’t work from home, she has a ready answer: "I am working from home: I’m taking care of my mom, that’s basically my job."