James Perkins used to visit his parents daily at the assisted-living facilities where they live.
He learned that he couldn’t do that any more.
“It was wearing me out,” said Perkins, a Spotsylvania County resident who has been the sole family caregiver for his mother and father—who suffer from vascular dementia and Alzheimer’s, respectively—for almost nine years. “Now, I try to go every other day, on weekends, when I have more time.”
When Perkins’s mother was first diagnosed, she lived with him. Both his parents settled into Poet’s Walk, a private memory-care facility in Fredericksburg, about a year ago. But that doesn’t mean Perkins’s caring duties are over.
He works full time as a route coordinator for Stafford County Public Schools, but still makes time to take them to medical appointments during the week and to church on Sunday. He acts as conservator of their estate and monitors their medications, among other tasks. He’s also spent nights in the emergency room with his parents after they’ve fallen.
Perkins, who was honored as Caregiver of the Year last year by the local group Partners in Aging, said he learned that he can’t care for his parents if he doesn’t care for himself—and that means not going to see them every day, and not staying for too long when he does go.
“I’ve learned to schedule my visits,” he said. “If I’m tired, I don’t go. Or I go when they’re getting ready to eat dinner, so there’s a natural transition.”
An only child, he’s thankful that he’s always been close to his parents.
“If I didn’t have a good relationship with them, this would be even harder.”
In Virginia, family caregivers such as Perkins—people who assist their older relatives living with chronic, disabling or serious health conditions—provided an estimated $11.2 billion in unpaid care in 2017, according to the AARP report “Valuing the Invaluable,” which came out last year.
More than 1 million family caregivers in the state provided 870 million hours of care to their aging or disabled parents, spouses or other close relatives.
Caregivers provide a broad range of assistance, from help with personal care and daily living activities—such as bathing, dressing, paying bills and preparing meals—to administering medication, treating wounds, managing medical equipment, advocating for their loved ones during medical appointments or hospitalizations, and locating and arranging outside services.
AARP estimated the value of one hour of care by averaging the state minimum wage, the median wage of a home health care aide and the median private cost of hiring a home health aide. In Virginia, it came to $12.81 an hour.
In the Fredericksburg area, rent at an assisted living facility can cost between $4,000 and $8,000 per month, and hiring a home health aide through a company can cost $25 an hour, according to Patricia Holland, executive director of Healthy Generations Agency on Aging, a local nonprofit.
“So that could be $600 a day, or $18,000 a month, for care in the home,” Holland said. “I don’t know where that money comes from. The cost of care is extremely prohibitive for many, many families.”
Faced with the cost, a growing number of families are choosing to care for their older relatives themselves.
Nationwide, the estimated value of their unpaid contributions was approximately $470 billion in 2017, a $100 billion increase since 2007, the report found. That’s more than all out-of-pocket spending on health care and three times as much as total Medicaid spending on long-term services and support for people with chronic conditions, disabilities or frailty.
Nearly half of adults ages 65 and older have difficulty carrying out daily tasks such as bathing or getting in and out of a chair without assistance, and 95 percent receive some help with those activities from their family or close friends, the report states.
An aging population means family caregiving will become more prevalent, but changing demographics will make that harder. According to the U.S. Census Bureau, by 2035, adults ages 65 and older will outnumber children ages 18 and younger for the first time in history.
In addition to an aging population, birth rates have fallen consistently from 24.1 live births per 1,000 people in 1950 to 11.8 in 2017, according to the Centers for Disease Control and Prevention.
Families are not only smaller, but also tend to be more widely dispersed, placing the burden of care on fewer people. A 2013 AARP report on the aging baby boom generation found that by 2030, the ratio of potential family caregivers for every adult aged 80 and over will fall from 7-to-1 to 4-to-1.
“At some point in time, we are definitely not going to have enough [family members] to care for other people,” Holland said.
The AARP report makes the same point. “The aging of the population can no longer be viewed as a private, family-only issue,” it states.
IN NEED OF SUPPORT
Today’s family caregivers are more likely to be employed than in the past. Sixty percent of family caregivers work at a paying job either full or part time. They may need to miss work for their caring responsibilities or quit work entirely, all while incurring out-of-pocket expenses related to their caregiving duties that in 2016 averaged $7,000, an AARP study from that year found.
The financial impact can add to the significant emotional and physical toll that comes from working and caring for a loved one.
Rebecca Hawkins of Fredericksburg said her mother suffered her first heart attack in part from the “immense” stress of caring for her mother-in-law while working.
“Her employer would get upset if she came in even three minutes late, knowing full well she was taking care of her ailing mother[-in-law],” said Hawkins. “During that same time, I was working full time and going to college at night a few times a week. The rest of my time was spent caring for that grandmother, as well. I also suffered from extreme stress during that two-year period.”
Hawkins said she is now a family caregiver for her mother, who is elderly.
“It reaches out and affects your life in all directions,” she said. “Your days and years are planned around it. Your finances are planned around it. There’s a routine to it that is rigid and ongoing, especially as the person’s health declines.
“And all of those people out there who are trying to be as loving and supportive to the aging parent as possible, they really don’t have a lot of resources to turn to—there isn’t a lot of help provided,” Hawkins added.
She said she feels the work of family caregivers isn’t understood or valued.
“In this country, we regularly put our elders in homes or facilities, largely because we believe we can’t offer the assistance they need,” Hawkins said. “The popular narrative seems to be that we’re doing what’s best for them. Because of that, the ones who choose to provide care at home are left behind to fend for themselves, not knowing where to go for help or even if there is any help to be had.”
Hawkins said she struggles with not knowing where to go with questions about her mother’s care.
“What I believe would help is an eldercare hotline we could go to with questions or concerns, as well as a place to call when we just need to vent or hear support,” she said.
She also thinks doctors of elderly patients should ask about the caregiver’s needs or provide information about self-care “because the [caregiver’s] well-being is the patient’s well-being.”
Stafford resident Shannon Maurice–Williams said she was let go from a full-time job in Quantico because of the time she took to care for her mother after she was diagnosed with cancer, which led to her mother’s death in 2014. She had been supplementing her mother’s fixed income from Social Security, so when she lost her job, it was a huge financial blow to both of them.
She’s thankful that her ex-husband stepped up to support them.
She said she now works full time from home and wishes that had been an option back then.
Like Hawkins, Maurice–Williams, who moved back home to care for her mother, said the role left her feeling isolated.
“My mother was a very private person. I tried to protect her privacy as much as I could, so we didn’t really have a lot of guests to visit,” Maurice–Williams said. “I didn’t have as much hands-on support as I think I probably needed. It took a toll. I lost weight and didn’t have much of a social life. I just kind of put my life on the back burner.”
Advocates want to see federal and state governments support family caregivers through legislation and financial investment.
Holland said employers can support family caregivers by giving them flexibility at work to perform their care duties at home. Virginia could expand protections under the Family and Medical Leave Act to apply to employers with fewer than 50 employees and cover all primary caregivers, or establish a statewide paid family leave program.
“It’s that compassion piece. Most employers see people coming through the door and leaving the door and keep track of their hours, but that’s not necessarily how we have to keep looking at things. [Employers] should look more at how the job is being done, not that you’re there every second of the day,” she said.
State Delegate Jennifer Carroll Foy, whose district includes part of Stafford County, this week introduced a bill—HB 825—that would require the Virginia Employment Commission to establish and administer a paid family and medical leave program funded through premiums assessed to employers and employees.
AARP also recommends that states strengthen family-friendly workplace policies such as telecommuting, flexible work options, job-sharing and workplace caregiver support programs.
Some state and federal initiatives are already in place to help support and empower family caregivers.
In 2015, Virginia joined the majority of states in passing the Caregiver Advise, Record, Enable Act, which requires hospitals, upon discharge of a patient, to instruct family caregivers on the medical and nursing tasks they are expected to perform for the patient at home.
Virginia could include a family caregiver assessment as part of its Medicaid or other publicly-funded home-based care plans for the elderly or disabled. The report estimates that more than 30 states already provide that.
These assessments include questions about the caregiver’s health, stress level, whether they are employed or need financial help and whether they need training to be able to carry out their care duties.
Medicaid waivers can also pay for in-home care, giving the caregiver a few hours a week for their own needs or to complete other tasks, Holland said.
In 2018, the federal government enacted the RAISE Family Caregivers Act, which directs the secretary of Health and Human Services to develop and maintain a strategy to support family caregivers. An advisory council that was established to support implementation of the act held its first meeting in August.
Eleven states—Idaho, Louisiana, Maryland, California, Alabama, New Jersey, Wisconsin, Delaware, Hawaii, Mississippi and New Mexico—have created caregiving task forces to recommend actions to address the needs of family caregivers.
Locally, Partners in Aging administers the Betty Bazemore Respite Grant, which is given one time for respite care for eight hours or two four-hour sessions.
“If the need is greater, we can adjust that,” said Holland, who also serves on the Partners in Aging board. “Not a lot of people take advantage of that. We’ve also done adult day care subsidized with that grant. It can really try to fit a situation that’s occurring.”
AARP also recommends that states explore ways to provide financial assistance to family caregivers or expand existing such programs. Some states permit payment of family caregivers through vouchers, grant reimbursements or tax credits.
Virginia offers up to $400 a year to caregivers who live in the same home as the person they care for through the Lifespan Respite Voucher, though funding for it is limited, according to the program’s website.
At the federal level, a bipartisan bill in committee called the Credit for Caring Act—sponsored by Rep. Rob Wittman, whose 1st Congressional District includes much of the Fredericksburg area—would provide employed caregivers a tax credit of up to $3,000 to meet 30 percent of caregiving-related expenses exceeding $2,000.
Perkins learned that he has to be a caregiver to himself as well as his parents. He attends Mary Washington Healthcare’s caregiver support group and Alzheimer’s support group and finds them “invaluable.”
“It gives you a place to talk about your situation in an environment where people know what you’re going through,” he said. “We get each other. Family and friends might be sympathetic or empathetic, but they’re not living it.”
Perkins said his wife and two sons, ages 21 and 19, support him in his caregiving, but that he finds the best self-care to be going out and doing things by himself.
“You know, you still have to come home and be dad, be husband,” he said. “Being by myself is better. I go for a walk in the park. I go to movies by myself. Anything that’s a distraction, where I can just exhale for a minute.”
Perkins said parents should start making plans for their later years earlier than they think—and talking to their children about these plans. “There’s no manual for caregiving,” he said.
“[As a child or young adult], you don’t think, one day, I’m going to have to care for mom and dad,” he said. “But all it takes is that one illness, or fall.”
This story was updated to correctly identify Partners in Aging as the agency that honored James Perkins as Caregiver of the Year and administers the Betty Bazemore Respite Grant.