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Recognizing overtaxed caregivers

Those with adult relatives in need are finally getting more support.

Rea York (R) listens as her mother Dorothy speaks with a reporter in Philadelphia, Pennsylvania, November 24, 2015. York is caring for her 86-year-old mother who is bed bound and has Alzheimers.
Rea York (R) listens as her mother Dorothy speaks with a reporter in Philadelphia, Pennsylvania, November 24, 2015. York is caring for her 86-year-old mother who is bed bound and has Alzheimers.Read moreJEFF FUSCO / For the Philadelphia Inquirer

Sheila-Rea York warmly welcomed a visitor to the immaculate cottage in Mount Airy, then provided blue hospital-style shoe covers and antibacterial soap for hand washing.

She led the way to the bedroom and proudly introduced the focus of her life - her mother, Dorothy York, 86. The octogenarian was propped up in a hospital bed, wearing a floral lilac nightgown. She can't walk and is disabled by many infirmities, including dementia.

"I'm real old," she said when asked her age. "They used to change people's age way back to get jobs and all, and I'm older than they say."

Aside, Rea York murmured, "My mother says she's 129 years old."

Rea York fits the National Alliance for Caregiving's profile of a "higher-hour" caregiver: a fiftysomething woman who spends an average of 62 hours a week bathing, dressing, nursing, running errands, communicating with doctors, and managing the finances of an adult family member. Except that York, who lives with her mother in a rented cottage at the Germantown Senior Community, devotes twice that many hours a week.

Caretaking can be a grinding, depressing, uncompensated job. In 2013, about 40 million family caregivers in the United States provided 37 billion hours of unpaid care, worth an estimated $470 billion, according to the AARP Public Policy Institute's 2015 report, Valuing the Invaluable.

But as York can attest, caregiving can also be a gratifying labor of love, one that this society is finally recognizing as vital.

"I think we've made amazing strides," said Jill Kagan, director of the ARCH National Respite Network and Resource Center in Annandale, Va. "I've seen a dramatic difference in going to Capitol Hill. This year in Congress, for the first time, we've had members stepping up and talking about the issue of caregiving."

Support for caregiving families has improved thanks to Medicare and Medicaid changes, respite care organizations, workplace flexibility, and federal and state policy revisions, the AARP report found.

This progress is making it easier for Americans to receive care in their homes rather than in more costly nursing homes.

Dorothy York, for example, is poor and sick enough to be eligible for a nursing home that would cost Medicaid - that is, taxpayers - an average of $80,000 a year. Instead, she receives about $38,500 a year through Pennsylvania Medicaid to hire caregivers for 56 hours a week.

A trained aide comes in at varying times for about 40 of those paid hours. Rea York covers the other 16 paid hours, plus all the uncompensated time, including nights and weekends.

"I've always felt I have a choice, yet it was what I was going to do," said York, tall and willowy at 59. "I was the eldest daughter. I've always taken a leadership role. I'm hugely grateful because . . . my mom gets to stay in her own home and I get to put love in action caring for her."

York and her two sisters grew up with their mother, a part-time seamstress, in public housing in West Philadelphia.

As an adult, York moved to Miami, where she built a career as a licensed massage therapist; her clients included actors and Miami Dolphins football players.

"I loved Florida," she said. "I would come up to Philadelphia every six weeks as my mother got older and had difficulties. My sisters and I set up a schedule so one of us called every day."

In 2005, it became clear their mother could no longer live on her own. She had high blood pressure, pre-diabetes, digestive problems, and leg sores related to poor blood flow. She kept her apartment windows closed in hot weather, ignored the stacks of bottled water her daughters arranged to have delivered, and became so dehydrated she had to be hospitalized. She was diagnosed with Alzheimer's disease.

York's sisters - both with children and jobs - were in favor of a nursing home, not wanting to disrupt York's Florida life. York, who never married, refused, although she now acknowledges she was naive about how abruptly and completely her life would change.

Like most family caregivers, she had no training to meet her mother's complex medical and financial needs. For the first year, York used her limited savings to rent a large apartment for the two of them, intending to build a massage practice there.

"The first client who came in, my mother got very belligerent," York recalled.

She learned about Pennsylvania's consumer-directed personal assistance services. Basically, Pennsylvania and other states allow residents who are eligible for Medicaid who would otherwise be in nursing homes to hire helpers - including family members - to provide care at home.

Finding an affordable place to call home was another breakthrough for York. In 2006, after "calling everywhere," she learned that the nonprofit NewCourtland Network had just opened innovative senior housing: 18 two-bedroom cottages designed specifically to enable home care for dementia patients.

"At the time, I was told it was the only facility of its kind," York said. "The rent is capped at one third of my mother's Social Security income."

Over the last decade, Dorothy York's fragile health has become ever tougher to manage. Constipation and bowel blockages are continual problems, even though Rea York purees her mother's food and gives laxatives. At night, the aged woman has restless leg syndrome and insomnia, often fretting about being abandoned - even as her sleep-deprived daughter reassures her.

York needs the aide's help to get her mother out of bed, into a reclining wheelchair. "Then I can really clean her room and bed," York said.

She is conscious of the emotional, mental, and physical toll of endless responsibility. She belongs to various caregiver support groups, including one she helped establish for Spanish speakers. Online, she has found small, work-from-home jobs, such as booking guests for a radio talk show for $50 a month.

"One thing I'm good about is, I seek help. I got that from my mother," she said. "Six years ago, I started seeing a counselor. I get one hour of counseling in exchange for two hours of volunteer work."

Still, she does not get enough breaks.

"Many days - the hard days - I think this is the kind of life you could see yourself doing for three weeks. You put everything else on hold," York said. "But this goes on year after year."

The need for more relief - respite, in caregiver lingo - is a fundamental issue in the caregiving field.

"We have many families that don't even know respite care exists," Kagan of the Respite Network said. "Or if they have the money to pay for it, they can't find trained caregivers, or they feel guilty, or they're reluctant to use it for other reasons."

Elissa Lewin believes higher-hour caregivers need not only more relief, but opportunities to be self-centered. She directs Nancy's House, a nonprofit in Wyncote that provides self-care seminars - York has attended a few - and free or low-cost retreats of up to three days.

"We tell our guests that the only mandatory thing is that they eat and sleep," Lewin said. "In between, we teach stress management, yoga, meditation, and have discussions."

Another recognized but unresolved problem that York epitomizes: Many caregivers have to give up their jobs, losing wages, pensions, and Social Security benefits that experts estimate are individually worth an average of $300,000.

Some advocates and politicians want to change the law to provide Social Security benefits for unpaid caregivers, as well as incentives for employers to offer flexible work hours.

York, a self-described "tremendous budgeter," is confident she'll find ways to make ends meet after her mother is gone. When that happens, York will be sad, but not regretful.

"I'll be on a plane, headed for a beach," she said. "My sisters have agreed to clean out the cottage.