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Dorristene Branham got divorced when her only child, Constance Dunlap, was a few months old and 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 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 with a weary sigh. “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?’ It is a struggle.”
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, the majority 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 chosing,”
Caring for a vulnerable senior at home can be financially and emotionally challenging, and the largely female workforce providing this labor receives little help from the government.
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. I know 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 exactly how the money would be dispersed and 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 is “human infrastructure,’' every bit as deserving of government support as roads and bridges are.
“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.’”
Biden’s iniative 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.
“Talking about these forms of labor in a way that acknowledges their value marks a really big shift in the conversation.”
The coronavirus pandemic has shed light on the shortcomings of the American system of caring for the elderly. Across the U.S., 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 much rather remain at home than live 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. Biden’s plan, she added, is a “solid step” toward changing that mindset.
Pat Lang of Newington cared for both of her parents and her husband prior to 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 taking an early retirement at age 62.
When Lang’s father reached his late 90s, he, too, needed asistance with daily tasks. Lang helped her brother, who was able to work from home while caring for their father.
Lang, who is now 77, also took care of her husband when he was diagnosed with a fast-moving, and ultimately lethal, type of prostate cancer.
With help from hospice and her stepson, who unemployed at the time, she was able to keep her husband home as well. “Nobody wants to go into a nursing home or a hospital,” Lang said.
Some caregivers have to chose between helping an elderly family member and their own fulltime job. One in five family caregivers report a high level of financial strain and 45% experience some type of financial impact, according to AARP.
“No one, including those who care for elder adults as well as adult children with disabilities, should have to make the choice between caring for a family member or paying their bills,” said Rep. Rosa DeLauro, a Democrat from Connecticut’s 3rd District and the chairwoman of the powerful Appropriations Committee.
“Long before the pandemic, family caregivers have been undercompensated and undervalued. Now, with demographic trends and the spread of COVID-19, we face a caregiving crisis that must be addressed,” DeLauro said, adding that she is committed to working with the Biden administration.
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 receives assistance to help pay for 20 hours of respite care for her mother each week, for which she is grateful. But that isn’t enough to allow for Dunlap to take a fulltime 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”