a middle-aged woman from Memphis, Tenn., is no longer able to work. "I was trying to teach part time, but finally I had to give that up," she says. "There were just too many crisis calls."
The problem: Ramsey spends most of her time coordinating the care for her elderly parents who wish to grow old gracefully in the comfort of their own home. "My parents have begged repeatedly not to be put out of their house," Ramsey says. Like a growing number of elderly Americans, they'll do just about anything to avoid entering a nursing facility.
But honoring that desire has put enormous pressure on Ramsey and her husband both emotionally and financially. After a stroke left Ramsey's mother in a wheelchair and her father developed Alzheimer's, neither is able to get along independently. To cope, the family has decided to go the home health-care route. An aide with minimal training assists Ramsey's parents for 12 or 13 hours a day, seven days a week. But that runs $52,000 a year about as much as a fully staffed nursing home offering 24/7 care.
Ramsey went through two agencies and countless aides before she found someone whom she could count on. "It was no-show after no-show," she says. Now that she's found someone, she still feels like she's always on call in case of emergencies. She's cancelled two vacations and now carries a satellite beeper when she does manage to get away. She even brings her cell phone to the movies. And in the past, her husband gave up career opportunities to remain in Memphis. "You are never off duty," she says.
If you ask Ramsey if she would do it all again, she quickly answers yes. The alternatives, she insists, are simply "too grim." But in a world of rising medical costs and low unemployment, home health care clearly has drawbacks the agency brochures mostly fail to mention. The key is to go into it with your eyes wide open. So we spoke with a number of social workers, industry insiders and caregivers to get the inside scoop. What follows are 10 things your local home health-care agency won't tell you.
Choosing to stay at home is the easy decision. Paying for it is another question altogether. Home health care costs an absolute fortune, especially if you need an aide 24-hours a day. According to the MetLife Market Survey on Nursing Home and Home Care Costs, the average nursing home costs $66,153 a year (for a private room). Fees are considerably higher in metropolitan areas or for premium care, but either way, your loved one is getting full-time attention from a staff that includes nurses, social workers and other professionals.
Full-time home health care can cost more than twice> as much and most agencies don't even recommend it. That means you're on the hook for the hours when your parents have no aide. Phyllis Mensh Brostoff, a social worker and president of Stowell Associates and SelectStaff Services in Milwaukee, says her agency charges clients $20 an hour during the week and $23 an hour during the weekend. Brostoff admits her fees are a bit high. She justifies it by offering "an enriched service" that includes a care manager who keeps track of your loved one with unannounced visits. SelectStaff will also ensure there is someone always on call.
The fee, however, is just the beginning. Don't forget that if your parents live in their own home, you've still got to pay to take care of it. And tipping is considered part of the compensation. "This is just expected within the industry," Ramsey says. For example, she tips her aide every time her incontinent parent has an accident. In addition to money, she also provides gifts and lets her parents' caregiver go home a little early whenever she can.
You could probably hire someone privately for much less and a lot of people do. But by giving up the agency you also lose the safety net. It's up to you to make sure your choice has a clean criminal record and the requisite skills to take care of your parents. And if you want to play by the up-and-up, you'll probably have to pay withholding taxes.
Unfortunately, the typical house isn't built for the elderly. The hallways and bathrooms are often too small to accommodate their special needs. And stairs can present an insurmountable obstacle. Depending on your loved one's disability, you may need to make some pretty significant home modifications.
How much can that cost? Get ready. If someone is relatively mobile, you may get by with spending $500 to $1,000 for a few properly installed grab bars in the bathroom and at the top of the main stairwell. But the wheelchair-bound may require structural changes that could total $50,000, says Barry Kolton of Morristown, N.J.-based Mobility Consulting. "When people hear the prices, they look at me like I'm from Mars," he says.
Someone who only uses a walker will still have to make some home modifications if they don't live in a ground-floor apartment. In this type of scenario, Kolton recommends that outdoor steps be rebuilt to make them lower and wider. (This alone will cost a few thousand dollars.) Inside, Kolton recommends a stair lift, which costs $4,000. The worst part is that private insurance won't cover these sort of costs for the elderly. In most cases, an insurance company will only help out if someone younger is disabled due to an accident.
If you thought the government might help out, think again. Chances are, both home health-care fees and the costs of retrofitting your parents home will have to come directly out of your own pocket. Medicare, for people 65 and over, won't cover long-term care. It will pay for treatment if your parent needs temporary acute care if your dad fell and broke his hip, for instance. But it won't pay much.
Like the managed-care companies, the government has now started paying agencies a flat fee for treatment. Consequently, it's in an agency's best interest to keep costs down and provide your loved one with as few visits as possible. "The average person gets approximately six hours a week," says Connie Rosenberg, president of the National Association of Professional Geriatric Care Managers. Since a nursing home is cheaper, the government payout will stretch a lot further there. (Medicaid will also pay for a few home visits a week. But to qualify one needs to be impoverished with assets of just $2,000 to qualify.)
And if you think home health care is expensive now, just wait a few years. At the current rate of medical inflation, the American Council of Life Insurers expects the total national expenditures for home and community-based long-term care to more than quadruple by 2030. So how should you plan to pay for this level of care? Start saving. "Long-term care insurance doesn't solve the problem," says Stephen Barnes, a financial planner based in Phoenix. "We recommend clients save aggressively."
After five years of home health care, Mona Waivada, an elementary-school aide from New Jersey, decided to place her mother in a Florida Alzheimer's center. She made up her mind when it became clear her mother needed a lot more care throughout the evening. "She had no concept of time and would get up in the middle of the night and get dressed for the day," Waivada says. "It just became so overwhelming."
Many experts would agree with Waivada's decision. "If [a loved one] needs 24-hour supervision, sometimes home care is not the best," says Anita Bradbury of the Texas Association of Home Health. An agency may even tell you that your parent's needs are too great for their service, she adds. If it's necessary that every shift is covered, for instance, that can turn into a major problem. After all, like any employee, a home health-care aide can catch a cold and call in sick. And many agencies don't want to be responsible for that.
Another thing to think about is how long your parents' money will last. If you plan to move them into a nursing home eventually, it's crucial that you do so before their income is depleted. The reason: If you want to get a bed at one of the nicer "residences," you'll need to be able to convince management that you'll be able to pay its full fees for a year or two. That's because once your mom or dad is in, the facility has to keep them until they die. Medicaid will pick up the bill after your parents' assets run dry, but it won't match a good nursing home's fees. Consequently, those facilities are very choosy about whom they admit.
When Bob Share, a middle-aged man from Livingston, N.J., decided to finally place his mother in an Alzheimer's unit, it initially wanted three years of payment. Luckily, Share was able to negotiate. "We told them we could only guarantee one year," he says. "At that point she only had $125,000, and with social security and some other income we were able to make it stretch." Don't count on being so fortunate.
Given all the horror stories about nursing homes, most people figure that while home health care is expensive, you're definitely getting better quality service. Well, it doesn't always work out that way. Thomas Walz, a gerontologist and social-work professor at the University of Iowa, says there's a bias in the care-giving industry against working with the elderly. That means the real talent is stretched thin, forcing many agencies scrape up who they can and give them minimal training. While there are exceptions, what you're usually getting is a paraprofessional at best.
"You are operating with temps from the Manpower pools," says Walz. "[The agencies] are putting someone in a white shirt, but they don't know that much." Part of the problem is that in most cases, at least half of the fee you're paying goes back to the agency, says Stowell Associates' Brostoff. That means the person tending to your parents is likely making less than $20,000 a year. Nothing like relying on someone who's both overworked and underpaid.
Not surprisingly given the low pay and long hours home-care agencies have a terrible time hanging onto their employees. The turnover rate in the industry is tremendous, meaning that once your parent develops a good relationship with his or her daily caregiver, there's a good chance that person may fly the coop.
The U.S. Department of Labor says the home health-care industry is too diffuse to collect reliable turnover statistics. But the agency does look at the industry's replacement rate a measure of how many new people need to enter the field to fill vacancies left by others. "[The number] is much higher than other industries," says Theresa Cosca of the Bureau of Labor Statistics.
You don't have to tell that to Marcia Gutterman of Margate, Fla. Her 94-year-old mother had 10 health-care aides in just five months recently after insisting on staying in her New Jersey home. Indeed, there were so many, her family couldn't keep track of them all. Finally, they found someone privately whom they hoped would stick around. This aide treated Gutterman's mother with respect, something many of the other caregivers neglected to do. She also saw to it that the elderly woman got to see her friends in the community, either by driving her to functions or by throwing tea parties in her home. The family was ecstatic until the aide resigned unexpectedly after only three months. That left them in the lurch once again and triggered a very unpleasant chain of events.
"The whole family got together and decided my mother needed something more permanent," Gutterman says. Because she refused to budge, "we decided to tell her she was going on a vacation to Florida." Instead, Gutterman moved her mother to an assisted living facility near her home in Margate. "When my mother found out she really carried on," Gutterman says. "She was very angry."
Theft is another big problem for the home health-care industry. And because fewer that one in 10 cases get reported, it's very hard to track, says Amy Klobuchar, the Hennepin County Attorney in Minneapolis. She says her office has been seeing an increasing number of theft cases. But since the elderly are often skittish about making accusations, the problem is probably bigger than the numbers indicate. Older people with failing senses sometimes worry that they might have simply misplaced something. And if they like their caregiver, they might be afraid to alienate him or her. Sometimes, the victims are simply unaware that anything has been stolen. Indeed, that's what many of these aides are hoping for, Klobuchar says.
In one case Klobuchar prosecuted, a 37-year-old man was accused of reactivating his employer's credit card and running up more than more than $6,000 in charges. At the time, he was living with and caring for an elderly man with Alzheimer's. Connie Rosenberg of the National Association of Professional Geriatric Care Managers (whose own mother-in-law was the victim of a caregiver theft) recommends people take precautions and put away their most valuable items. And unless your caregiver is a close family friend, don't ask him or her to pay the household bills.
Tim Brown, a spokesperson for the National Association of Home Care, insists that charges of theft and fraud are overblown. "Home health care, though it presents an obvious opportunity, has one of the lowest levels of fraud and abuse of any of the Medicare and Medicaid funded providers," he says. Brown admits, however, that many aides go unregulated since they're hired privately. His recommendation is to stick with a certified agency.
But Carol Ramsey was using a bonded agency. And that didn't prevent a home health-care aide from stealing a $1,500 gold necklace from her mother. "I knew right away, since I was constantly coming and going," she says. The aide assumed that Ramsey's father wouldn't notice since he has Alzheimer's. "But my mother's mind was 98%." When Ramsey told the agency, they said they would just wait and see if it happened again. Meanwhile, Ramsey said she didn't press the issue because she was more concerned about her parents quality of care.
Most experts agree that your loved one is less likely to suffer neglect from a home aide than in a nursing facility. Still, it's tough to find doting aides who'll give your loved one the same level of care you would provide. Bob Share fired an aide who wouldn't converse with his mother. "It didn't matter that she was taking care of the cleaning and the cooking," he says. "I just wanted her to talk and read with my mother."
For Ramsey, the incidents were more extreme. Her mother, who couldn't get in and out of bed without assistance, was once stranded for over an hour and a half while waiting for her aide to arrive in the morning. Another caregiver put Ramsey's parents to bed early so she could baby sit her own grandchild.
One New York woman, who asked that we not use her name, says her 97-year-old aunt was unknowingly left alone in the evenings. "One night there was a black out and my aunt fell," the woman says. "But the aide was away visiting her boyfriend." Although the caregiver promised not to leave the aunt alone again, the practice continued until she finally resigned. "My aunt kept her on since she hated change."
As the previous examples demonstrate, one of the toughest aspects of hiring a home health aide is trying to monitor the care. This is especially difficult if the patient isn't cognizant. In these cases it's important that someone else be involved, says Anita Bradbury of the Texas Association for Home Care. She says you should treat home health care as you would childcare. "No one would just drop their kid off at the front door [of a child care agency] and never walk in," she says.
While interviewing agencies, ask how they monitor their employees. "Some really have no supervision and act like a temp agency for an office," says SelectStaff's Brostoff in Milwaukee. To solve the problem, Brostoff schedules geriatric-care managers to drop in unannounced on their aides. You can do the same thing if you live nearby. The aides also need to know that they're not the only one taking care of this elderly person. "[Aides] are mostly good, kind people," Brostoff says. "But it can get discouraging if they think they are the only ones who care."
Depending on your home health-care aide to show up everyday on time is a gamble. So you'd better be prepared for the times when he or she is late, can't catch a ride or has the flu. If you have an agency, the agency should be able to send a replacement. But you can't be sure that there won't be some sort of interruption in care. The responsibility, of course, is ultimately up to you.
Mary Hellmoth of Winnetka, Ill., makes sure the agency she uses assigns more than one person to her mother's case. She hires one aide for Monday and Tuesday, another for Wednesday and Thursday and another for Fridays. That doesn't guarantee much continuity of care, but it does make it easier for the agency to replace a worker who quits or gets sick.
When you hire an aide privately, you face the burden of making sure every shift is covered. "You aren't just hiring one person," Mona Waivada, the New Jersey school aide, says. "We had three aides to help cover the weekends and we had to coordinate everyone's schedule. Many times they are working other jobs and you have to coordinate with that, too."
The bottom line is that home health care is no panacea, even if you can afford it. It may yet be better than a nursing home. But be prepared: Caring for an elderly loved one is a full-time job.