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The hours are brutal and the work can be back-breaking.

There’s the heartache of witnessing an elderly parent or spouse decline in health.

And then there is the personal sacrifice and financial toll.

A new national survey has found a family caretaker spends an average of $5,531 out of pocket each year to care for an ill or aging loved one, a strain against the median family income of $43,000, according to a survey conducted by Evercare, a national health-care company, in conjunction with the National Alliance for Caregiving in Bethesda, Md.

In other words, more than 10 percent of their income is spent caring for their loved one.

What the average American household spends in caretaking is $400 more than what the family spends on their own health care and entertainment combined, according to the telephone survey results of 1,000 caretaker families nationwide. The survey was done in June and July.

Long-distance caregivers spend more, an average of $8,728, according to the survey.

“There’s an endless list of costs that add up,” said Dr. John Mach, chief executive officer of Minneapolis-based Evercare. “The health-care system is teetering on the backs of caregivers.”

More than 34 percent of caretakers tap into savings to make ends meet and 23 percent reported cutting back on their own health-care needs, the survey found.

The most significant sacrifice is their own personal time; they spend on average 35 hours a week caring for their loved one. Many of the caregivers, 37 percent, had to quit jobs or reduce their work hours. Likewise, they are not saving as much money for their childrens’ future.

Directors of Southwest Florida agencies that help caregivers were surprised by the $5,531 figure. They believe it is underestimated and question which expenses were left out of the equation.

“That is incredibly low,” said Jennifer Avros, a community relations specialist with Comfort Seekers, a 550-franchise company that provides nonmedical services to the home-bound elderly and their caretakers. Comfort Seekers has been in Collier County for five years.

“What a family spends is often hidden in grocery bills and (your) vacation days become sick days,” she said. “The financial toll is incredible. The caretakers get so overwhelmed that they start to neglect their checkbooks, their bills.”

Chuck Pollard, president of the Alzheimer’s Support Network in Collier County, agreed the survey figure of what caregivers spend out-of-pocket seems too low. All of his clients are financially strained by their caregiving expenses.

“It’s draining every last penny,” Pollard said. “They have all these additional costs that are not covered (by insurance). We have caretakers who can’t attend to their own health-care needs.”

The local Alzheimer’s support group, which assists 2,500 caregivers, has family counselors to coordinate help that’s available in the community. Churches are a huge source with volunteers who provide relief to caregivers, he said.

Elders with no family in the area as caregivers and without the means to move into an assisted-living facility and who can’t afford home care are “left to float.”

What’s come into play in many mobile-home communities is an informal network of caregiving that is a real lifeline to older residents with no other support, he said.

“It’s a tough problem down here,” he said, adding that Collier County government provides nothing to his group or other social services agencies to help caregivers.

His annual budget is $350,000 and it comes entirely from private contributors and foundations. He and his wife have been voluntarily running the Alzheimer’s support network for 25 years.

State money that was available in the past, which gets funneled to clients through the Area Agency on Aging for Southwest Florida, is now in limbo given the state’s budget cutbacks.

Officials with the Area Agency on Aging couldn’t be reached for comment.

“We don’t know where we stand,” Pollard said. “All we know is everybody seems to be out of money.”

LuAnne Wahlstrom, executive director of The Care Club, an adult day-care center licensed for 41 clients in Golden Gate, said she was surprised by the survey finding that caregivers spend an average of $5.531 a year.

“I would think that number would certainly be higher,” she said.

Perhaps the biggest dilemma is that caretakers can’t afford to have someone come into their home to care for their elderly parent who lives with them and yet they need to work outside of their homes.

“We see so many of these people leave their jobs because they have no help,” she said.

Many people don’t realize that Medicare, for people 65 and older, is a limited resource after a hospitalization and provides only 90 days of assistance, based on certain conditions, she said.

Medicare will cover an assessment of what’s needed in the home and for some caregiver training, Wahlstrom said.

“But again, it’s not permanent,” she said.

The Care Club offers a sliding scale fee, from $15 a day to $50, for the day care center that’s open five days a week, from 8:30 a.m. to 4:30 p.m.

“If the circumstance is great enough, we have some people who come for nothing,” she said.

Florida ranks fourth for its number of caregivers — 1.76 million by 2004 estimates, trailing New York, Texas and California, according to the National Family Caregivers Association in Kensington, Md.

The economic value of the “free” caregiving in Florida was $18.7 billion in 2004. Nationally, the tally of “free” caregiving was $306 billion that same year.

The cost to businesses by lost productivity of their caregiver employees is $17.1 billion; with a total annual cost for all caregivers is $33.6 million, according to the MetLife Caregiving Costs study, which began examining the impact to businesses in 1997.

Apart from the financial toll of being a caretaker, the emotional and physical toll is tremendous and can’t be quantified in dollars.

“You are not as productive at work because you are exhausted,” said Avros, with Comfort Seekers. “It is so stressful. The life expectancy of caregivers goes down.”

The stress causes caregivers to age prematurely and their life expectancy can go down by as much as 10 years, according to a 2004 study at the University of California.

Mach, with Evercare, and the national caregivers alliance are advocating for a more unified system of support programs for caregivers, such as through respite programs. The survey findings will be presented to staff members of Congressional health-care committees.

“We will be doing a congressional debriefing,” he said. “Part of what we are trying to highlight is what can you do today.”

For instance, case managers with social service agencies and home-care firms can tailor services and special-needs plans to fit a family caregiver’s needs, he said.

“Our care managers look for community resources to patch together a quilt of services that can reduce the caregivers’ load,” he said. “There are some solutions out there today.”