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Silas Walker, Deseret News
Celestia Cragun helps her son Robbie, 40, with his iPad at their home in Cottonwood Heights, Utah, on Saturday, June 8, 2019. Cragun's husband passed away in February of this year and she has been taking care of Robbie by herself ever since. "I've been doing most of the physical things involved in caring for Robbie for many years."

MIDVALE, Utah — When Kathy Watts needs to go to a doctor's appointment, her husband Joe takes a few hours off from his job at a company that distributes automotive paint. She no longer drives, so he takes her to her appointments and and provides an extra pair of ears to hear what the doctor has to say.

Were she to require more serious help with her health, Kathy Watts told the Deseret News, she would just as soon go into a long-term care facility. She was the full-time caregiver for several years to Joe's mom, who had dementia, so she knows well how hard it is to care for a loved one. She's not sure she wants her husband and children to take on that task. Caregiving wore her out and her own health declined as a result.

Joe and Kathy Watts have been married for 44 years. He still works full time; she's retired and had some health problems in recent years, putting them among the families in which health issues increase the likelihood one of them will need to provide care for the other.

Watts family photo
Jolyn Watts with her parents, Kathy and Joe Watts. Jolyn moved back to Utah from Alaska a few years ago to be near her parents as they age.

That was on daughter Jolyn Watts' mind when she moved back to Utah from Alaska several years ago. She hadn't been around when her grandmother needed care and her mother did all the heavy lifting. She wants to be there should one or both of her parents require care.

Most families will face a similar situation at some point. One in 6 American employees provide care for an elderly or disabled loved one, according to the Family Caregiver Alliance National Center on Caregiving. The center defines a "caregiver" as an unpaid person who helps someone else with activities of daily living or medical tasks. That so many employees juggle jobs and caregiving is one reason paid family leave has become a hot topic nationally.

Seven states, including most recently Connecticut, have passed some version of paid leave for workers. Private companies like Targethave adopted policies for paid family leave for its employees. And Congress is considering several bills; some experts predict a version of paid family leave will pass perhaps as early as this fall.

Much of the attention to the topic has focused, however, on leave for the birth or adoption of a child. Caregiving across the lifespan isn't getting the same attention.

Many employed caregivers have had to cut their work hours, take an unpaid leave from work, skip promotions and deal with bosses and coworkers who are irritated as they try to figure out how to balance their tasks at work with what's needed at home, according to the alliance.

Nor is care provided only by those who are employed. Retirees, homemakers and others are among the estimated 41 million Americans who provide unpaid elder care, said The Rev. Amy Ziettlow, pastor of Holy Cross Lutheran Church in Decatur, Illinois, former hospice chaplain and co-author of the book "Homeward Bound: Modern Families, Elder Care, and Loss."

Ziettlow also wrote a family leave report for the Center for Public Justice titled "Called to Care" that was released Tuesday as part of the center's Families Valued Initiative, which "researches and promotes public policies and workplace practices that honor God's call to both work and family life." She said the report focuses on care for the elderly because it's a large — and growing — challenge that gets lost when paid family leave discussions focus only on birth.

In the next 20 years, one-fifth of all U.S. residents will be 65 or older, she wrote. "At the same time, the relationships and networks upon which caregivers and elders rely are under stress ... and more baby boomers will reach age 65 without a spouse or adult children to rely upon for care" because so many never married, got divorced and "had few or no children."

Caregiver journeys

The Rev. Ziettlow likes how Dr. Joanne Lynn, a hospice pioneer and long-term care physician, describes caregiving for those who are elderly. She said families may find themselves in one of three situations: a long roller coaster ride with periods of acute care needed amid stretches of relative calm; a short period of constant acute need that's like being in the deep end of a pool; or running a marathon of long-term support.

"All three can happen to someone at the same time," said the Rev. Ziettlow. "Different family members can be on different care journeys."

Celestia Cragun of Cottonwood Heights, Utah, has been on all three journeys across the years — often at least two of them at a time. She took care of her father during his last years. She quite recently took care of her husband of 51 years, Calvin, for an intensive 18-month period when he was dying of congestive heart failure. And during both of those caregiver stints, she was also taking care of her son Robbie, who has severe developmental disabilities. After her husband died, the level of care she provides Robbie, 40, intensified, because his dad used to do personal tasks like dress and bathe him.

Silas Walker, Deseret News
Celestia Cragun helps her son Robbie, 40, with his iPad at their home in Cottonwood Heights, Utah, on Saturday, June 8, 2019. Cragun's husband passed away in February of this year and she has been taking care of Robbie by herself ever since. "I've been doing most of the physical things involved in caring for Robbie for many years."

She said caregiving is always physically demanding, but it was made more so because her husband was 6-foot-4 and weighed 300 pounds, which wasn't a lot for his height, but was a lot to support. Robbie's not small, either. And while caregiving is rewarding, it's also physically and emotionally hard.

Cragun stayed home when her three kids were young, but went back to school for an MBA when she was 50, then went to work full time in the county auditor's office. About that time, her dad became ill. She, too, knows the challenges of juggling work and the need to provide care. She could split the tasks, though, with her husband back then.

Silas Walker, Deseret News
Celestia Cragun and her granddaughter Caitlin Shrive try to get her son Robbie, 40, to pet her husband's cat at their home in Cottonwood Heights, Utah, on Saturday, June 8, 2019. Cragun's husband passed away in February of this year and she has been taking care of Robbie by herself ever since. "I've been doing most of the physical things involved in caring for Robbie for many years," she said.

These days, she's home with Robbie full time, though her other adult children are over regularly and her neighbors sometimes check to see what she needs.

Help as a matter of policy

The Rev. Ziettlow's report tells "people of faith (caregiving) is part of our Christian faith tradition to honor elders." Elderly people may face challenges including impaired mobility, cognition, hearing and sight. She said when she looks at the pews during church services, she sees caregivers scattered throughout the congregation — as well as many worshippers who aren't yet caregivers but will take on that role in the future.

Providing care should be a policy priority, not just a matter of conscience, she said.

The Rev. Ziettlow hopes the report will invite people to start or join a conversation with lawmakers, employers, church and community members, and relatives and friends.

Caregiving already reaches deep into American family life. When the Deseret News asked about paid leave in its 2016 American Family Survey, broad public support was evident, with more than half of respondents favoring government requirements for employers to offer paid family leave and another 14 percent favoring unpaid leave. Americans clearly believe caregiving stresses families, who could use some help.

Congress is pondering what form that help could take, the major parties taking different approaches to paid family leave and ways to pay for it. Democrats have legislation in both the House and the Senate that would cover care across a range of situations from having a new baby to caring for a sick or disabled adult to end-of-life care. The funding would come from a payroll tax. Republicans have, so far, two different bills under consideration that provide paid leave for new parents, each funded by early withdrawals from Social Security, then deferment of benefits for a few months later in life.

All three types of caregiver journeys would be aided by work flexibility and paid leave, according to the report, but to be helpful, paid days off would also have to be accessible on short notice as need arises.

The report calls on different parts of society to step up. Faith congregations could spot and alleviate needs, but also provide information about community resources. They could enlist volunteers to help families directly, as well. Employers can provide flexibility and an adequate number of paid days off to help reduce financial care-related pressures.

As for public policy, it should "ensure adequate paid leave for caregivers in seasons of full-time care," the report said. The existing Family Medical Leave Act protects the jobs of eligible employees for up to 12 weeks with unpaid leave, but caregivers may end up quitting or downsizing their jobs because they cannot similarly downsize their caregiver responsibilities. Policies that help employees keep their jobs make sense because worker turnover is costly to employers.

Jolyn Watts said she currently serves primarily as backup, but would like to do more later if her mother's not well and needs help. "I usually feel like I'm not doing enough, but it's hard to miss much work," she said.

It's easier for her dad to take time off; it would be hard for her to take much without being penalized. That's one reason she'd love to see some form of paid family leave. If she knows in advance, it's easier to arrange time off, but needs that require people to leave work to be caregivers often occur in crisis and unexpectedly.

"In advance, I can figure it out and make it work," she said. "Where I run into problems is needing time off at a moment's notice."

Watts family photo
Joe and Kathy Watts have been married 44 years. She took care of his mother, who had dementia, for several years. They are starting to consider what kind of caregiver challenges they might face in the future themselves.
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At the very end of her mother-in-law's life, Kathy Watts got some outside respite from hospice, which helps manage care for people who are near the end of life. By then, she was worn out. One day, she was sitting in a chair, suffering a massive headache, and an 8-year-old relative stopped by to visit Watts' mother-in-law. The little girl took one look at Kathy Watts and exclaimed, "Oh no. Are you going to die too?"

"I told her it was just a headache, but when I looked in the mirror, I was gray," Kathy Watts said. "I looked awful."

Caregivers, she said, need all the understanding and help — from people to policies — that they can get.