Law aims to care for the givers

Funding to provide respite services for people tending to loved ones at home

by Chris Swingle Staff writer  Democrat and Chronicle Jan.10, 200

(January 10, 2007) — The Smith family of Pittsford likes having 89-year-old Grandpa live with them, even though he isn't quite sure who they are. He calls his son "my best friend" and his daughter-in-law Momma or Mommy. He welcomes hugs from "big boy" and the "fair-haired girl" — his grandchildren, who are 10 and 9.

While they do have sweet moments together, keeping an eye on someone with Alzheimer's disease is draining and overwhelming. Roger Smith Sr. wakes repeatedly at night and needs to be guided back to bed. He recently flushed a hand towel, flooding the bathroom. He may speak out inappropriately at church or movies, so they avoid taking him to such places.

"It's like having a new baby almost, or a sick baby," says Susan Smith, 44, his daughter-in-law.

In addition to patience and love, what helps the Smiths cope is the chance to take breaks from caregiving. Roger Sr. goes to adult day care at Valley Manor in Rochester five days a week. About once a month, he spends the night at the adjacent respite program.

Those respite nights allow the Smith foursome to reconnect and sleep through the night. "When he comes back, we're sort of recharged," says Roger Smith Jr., who's 48.

An estimated 44 million Americans care at home for an adult family member with a chronic illness or disability, and another 4 million care at home for a relative of any age with developmental disabilities.

Yet, only about 5 percent of caregivers use respite services, according to a 2004 survey by the National Alliance for Caregiving and AARP. Many can't afford it. Others, even when they're exhausted and their own health is suffering from the stress, aren't willing to temporarily turn over the care of their multiply handicapped child, frail spouse or parent.

Nationwide, other obstacles include a shortage of trained providers and quality programs, restrictive eligibility and fragmented, duplicative systems.

The federal Lifespan Respite Care Act, signed into law in late December, authorizes $289 million in competitive grants to state and local agencies over the next five years to make it easier for families to get respite care.

"This is a labor of love that often undermines the health of the very people who are providing it," Sen. Hillary Clinton, D-N.Y., said on the Senate floor about the respite bill she co-sponsored. "We found that many caregivers suffer physical symptoms, sleeplessness, depression. They feel like they're all alone."

A hodgepodge of programs for children and adults offer respite in the Rochester area. They are all intended to help people remain at home rather than need institutional care. The respite care can occur in or out of the home, at various hours. It can cover a few hours weekly or even last two weeks straight.

The care can be costly — Roger Sr.'s savings pays $150 to $185 per night — but it can be free in some situations.

Veterans may qualify for up to 30 days of respite care per year. Children or adults with developmental disabilities or traumatic brain injury may qualify for Medicaid-funded respite care through the state. Local agencies might provide respite, or help pay for it, if they haven't run out of funds. Some long-term care insurance covers respite care.

It can be so beneficial to take a break, caregivers and professionals say.

In the years that Peggy M. Lee of Rochester cared for her late husband, John, who had Parkinson's disease, she typically relied on relatives to stay with him when she needed to leave the house. Sometimes she hired a trusted home health aide. Her husband did stay at the Canandaigua Veterans Affairs facility — which provides skilled nursing care as well as dementia care — while she had surgery. He qualified for up to 30 days a year of free respite care there. But the Lees didn't believe the caregiving was attentive enough, so he didn't return.

Looking back, Lee says high-quality, affordable respite care would have been a blessing. "You don't realize how tired you are," she says. "You need time for yourself."

Respite can save families from falling apart, says Debra Bellare, a single parent in Greece. Her son, Sammy, who's 6, has autistic spectrum and bipolar disorders. She has bipolar disorder herself.

Last fall, despite 2½ hours of respite care per week, she reached the point of exhaustion. No longer able to control Sammy, she admitted him to hospital psychiatric care.

Now, the family gets 8½ hours of Medicaid-funded respite per week. Workers from DePaul's Avenues to Independence program and from the Mental Health Association's Better Days Ahead program take care of Sammy three times a week, either at home or on fun outings to the beach or an arcade. Bellare says the respite time lets her get exercise to "release some steam" and gives her one-on-one time with her 12-year-old daughter.

Keith McGriff, program director of Avenues to Independence, which specializes in the autistic spectrum, says respite is customized to a family's needs, but 221 hours per year is a common allotment. Often families use the help intermittently — more hours in the summer, when children aren't in school, or during particularly challenging times.

Respite may not be available right away, especially when it's government-funded. At Better Days Ahead, the waiting list is now about three months for children with a serious emotional disturbance, says director Debbie Bartlett.

Respite can dramatically lower stress in a family, Bartlett says. It's also a break for the child, who typically feels their parent is always on their case.

"Most of these kids can't be left with a typical baby sitter," she says. The child might hear voices, experience severe mood swings or be suicidal at times.

Susan Smith says she's not sure what she'd do without the day care and overnight respite for her father-in-law. It helps that he goes willingly. "He'll say, 'It's time to go to work.'"