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Caregivers Say: Pay Attention to Us

Calls for better support resound at a national caregiving conference

Part of the Transforming Life as We Age Special Report

To understand the caregiving crisis in this country, consider the seaside town of Boothbay Harbor, Maine. There, the average age is 53, giving it a demographic distinction: it’s one of the oldest towns in the oldest county (Lincoln) in the oldest state (Maine) in the Union.

And because the needs of the elderly in rural Maine far outstrip the supply of caregivers, Miri Lyons is exhausted.

The 35-year-old Boothbay Harbor home-care worker logs a combined 54 hours a week as a personal support specialist, caring for adults with physical disabilities, and as a direct support professional, caring for an 89-year-old woman. Another four days a week, Lyons is a family caregiver, tending to the needs of a stepdaughter with severe epilepsy.

At a national caregiving conference I attended this month in Washington, D.C., Lyons broke down while describing the lack of caregivers available to spell her for a few hours or replace her just for a few days: “You can throw money at respite care and paid time off, but if there aren’t caregivers to replace me, then I don’t feel comfortable taking the time off,” said Lyons.

In many cases, people will be spending more time and resources caring for their aging parents than they did raising their own children.

— Jo Ann Jenkins, AARP CEO

A member of the Maine People’s Alliance, Lyons was one of scores of caregiving activists from around the country who descended on the nation’s capital for “Organizing for Care,” a strategy session from Caring Across Generations (a national coalition of labor, elderly and family organizations) aimed at raising the profile of caregiving in America.

Five-year-old Caring Across Generations began just as the boomers began turning 65. Today, it’s trying to prompt policymakers to address the growing needs of the nation caregivers and the increasing number of those in the elder boom who require care.

‘Sick From Stress’

“Caregiving without any acknowledgment of economic value takes a toll,” Karon Hatchett, of Missouri Jobs with Justice, told the opening session of the conference. Hatchett became a family caregiver six years ago after her mother suffered a stroke (and now has early Alzheimer’s) and was forced to get a new job with more flexible hours, but with a significant cut in pay.

“I know people who’ve gotten very sick from the stress of caregiving and I worry about my own health — I gained 30 pounds — who will take care of Mom if I get sick? And at 61, I’m not getting any younger, who will take care of me?” Hatchett asked.

“I’m in the same Catch-22 that so many families are in — earning too much to qualify for Medicaid but too little to afford out-of-pocket care. I know Missouri is trying to expand Medicaid so you don’t have to be in total poverty, but should it be this hard? I didn’t know we were that mean-spirited a country.”

Changing Demographics

At the conference, Hatchett introduced AARP CEO Jo Ann Jenkins, who said she can relate to Hatchett’s story as one of several family caregivers for her brother and father. Sure, the way the country is aging is changing, Jenkins said, citing a statistic you don’t often hear: “By 2050, people 60 and older will outnumber children 15 and under for the first time in American history. And the fastest growing age group is people over 85 (with the second fastest those over 100).”

But Jenkins, the author of Disrupt Aging: A Bold New Path to Living Your Best Life at Every Age, warned that the new longevity, while transformational, comes with a cost.

“As society ages, more people live alone, women will be a larger portion of the elderly population and older people will be more dispersed geographically, meaning less informal support will be available in the community to care for the elderly as children and other relatives live further away from older family members,” she said.

Jenkins paused and added, “This has serious implications for caregiving. What I’m about to say may surprise you: We’re quickly coming to realize at AARP that in many cases, people will be spending more time and resources caring for their aging parents than they did raising their own children. And the simple fact is that the public and private sector policies on family caregivers have not kept pace with the changing family dynamic in our nation.”

Fighting for New Laws

To address the needs, the Senate has passed the bipartisan RAISE Act (Recognize Assist Include Support and Engage Family Caregivers Act), requiring development of a national strategy to recognize and support the country’s 40 million family caregivers.

But Jordan Downs, deputy policy director for Rep. Gregg Harper (R-Miss.), one of the legislation’s House sponsors, says: “We don’t have any intelligence leading us to believe consideration is imminent in the House.” In other words, don’t expect it to get out of Congress this year.

The Credit for Caring Act has also been introduced in both the House and Senate to create a federal, nonrefundable tax credit of up to $3,000 for family caregivers who work — to help them pay for services such as home care, adult day care and respite care. Rhonda Richards, senior legislative representative at AARP, acknowledged this legislation “may be more of something for the next Congress.”

Getting Candidates Involved

That may be why Kevin Simowitz, political director for Caring Across Generations, is looking to the 2018 midterm elections to make caregiving “a defining issue.”

To do that, Simowitz is working with grassroots groups around the country “to move the conversations about care from around the kitchen table to town hall meetings to force candidates and elected officials to engage in the care conversation.”

More immediately, the group has launched an online petition to encourage those who will moderate the Presidential debates to include a question on caregiving (after having no success in getting a caregiving question during any of the primary debates).

Caregivers are society’s unsung heroes. Remember Miri Lyons, the Boothbay Harbor caregiver, who earns $10.56 an hour at one job and $12 at another. Even with both jobs and child support, she still qualifies for Medicaid.

She has no illusion about what she does. “I’m not a business person. I’m a professional butt-wiper,” says Lyons, bluntly.

Still, she says she gets satisfaction out of caring for her 89-year-old client. “She has about a two-inch reach, so I’m her arms and legs when I’m there. She suffers a lot of indignity because she is very incontinent. It’s the most embarrassing and undignified part of aging for her. I’m there to tell her she’s doing great,” Lyons says.

We’re All In This

AARP’s Jenkins told the assembled group: “Former First Lady Rosalynn Carter said it best when she said ‘there are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers for themselves.'”

After a day of speakers and breakout sessions, the caregiving activists prepared to depart for the airport to energize their members back home. For her sendoff, Ai-jen Poo, a co-founder of Caring Across Generations and a 2015 Next Avenue Influencer in Aging, took a page from Cesar Chavez and the United Farmworkers and led the group in a rhythmic Unity Clap “which demonstrated the growth of a movement, its power and evolution.”

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