Finding a Good Home
Soon after Jeanne Erdmann's father passed away in 1995, it became clear that her mother, then 85, would one day need a new home. Although her mom, Florence Greco, was still in relatively good health, "she didn't like living by herself anymore," says Erdmann, 53, a science writer who lives in Wentzville, Mo. So six years ago, Erdmann and her husband invited Greco, who lived in a nearby county, to move in. "She didn't like being here at first," says Erdmann. "We have a lot of farms around us and no neighbors that you can see from the house, so she felt isolated." Erdmann and her husband also had to adjust, curtailing their evening activities to keep Greco company at night. Although Erdmann gets a break now and then when one of her two sisters takes Greco for a while, "the day in and day out wears you down," Erdmann says, especially as her mother has gradually required more care over the years.
Still, Erdmann and her mother agree the arrangement suits them. "I'm very lucky," says Greco. "I took care of my mother until she passed away, and I took care of my husband until he passed away, and I have very nice daughters and they're taking care of me."
Erdmann is one of 19 million Americans caring for someone over age 75, typically a parent or a grandparent, who may or may not live with them. Often called "informal caregivers," these adult children or relatives provide 75 to 80 percent of all long-term care in the United States. Many, like Erdmann, struggle to find a living situation that gives parents both the assistance they need and the independence they desire. Historically, older adults have lived on their own, with their children, or in nursing homes. Today's seniors, however, face a rapidly expanding array of housing choices. New programs, services, and technology are helping people to stay in their homes longer. Federal and state lawmakers are shifting funds from nursing homes to home- and community-based health services. Even nursing homes and retirement communities are offering in-home services ranging from housekeeping to telemedicine. The wide assortment is encouraging new models of independent living, such as elder cohousing. Meanwhile, the number of assisted-living facilities has grown substantially in the past decade, as have continuing-care retirement communities, which bring independent living, assisted living, and nursing homes together on one campus. The changes are putting pressure on nursing homes to create smaller, warmer environments.
Still, the search for the right fit for a parent can be frustrating and time-consuming. Not all options are available in every community, and cost structures can be baffling. Here's a look at trends in housing alternatives:
Aging in Place. Suzanne Stark, 80, has a pacemaker, a broken foot, and a 17-pound cat named Zenobia. When the cat had to be rushed to the vet recently, Stark called Beacon Hill Village, a nonprofit association that helps residents of the Boston neighborhood stay in their homes as they age. For a $35 fee, the association dispatched a helper who boxed the cat and drove Stark to the vet. "I have a daughter in Brookline who has two jobs and children who are 5 and 9," says Stark. "A big push for me was to not have her take total responsibility for me."
Forget the old joke about being nice to your kids because they pick out your nursing home. The vast majority of Americans, like Stark, grow old in their own communities. "People want to be where their family and friends are," says Elinor Ginzler, director of livable communities for AARP. Founded in 2001, Beacon Hill Village helps them do that. Open to neighborhood residents over age 50, membership costs $550 a year for individuals or $780 for households. Low- or moderate-income members like Stark, however, pay just $100 a year. Services include things like a weekly ride to the grocery store, nearby exercise classes, and access to a geriatric-care manager. And there's a concierge service of sorts: Need a plumber? A home-health nurse? Beacon Hill Village will set it up through screened providers at a 10 to 50 percent discount. "I would worry about living alone if I didn't have it," says Stark of her Village membership. Similar organizations are being developed in Denver; Washington, D.C.; Madison, Wis.; and elsewhere.
Other communities are creating a different version of the neighborhood-based retirement program. The state of New York is bringing social workers, health programs, and other aging services directly into some 50 "naturally occurring retirement communities," apartment complexes, housing projects, or neighborhoods where the population is growing older. These small programs have produced big results. For example, in Deepdale Garden Co-op, a Queens apartment complex where 60 percent of residents are over 60, city funds and philanthropic grants helped an onsite team-including a nurse and two social workers-reduce residents' risk of falling by addressing medical factors like low vision and hypertension, as well as installing grab bars and fixing cracked sidewalks. Communities in 20 states are launching similar programs.
In other areas, adult children are increasingly turning to an emerging class of professionals to help aging parents stay in their homes. Geriatric-care managers-typically for-profit social workers or nurses specializing in elder issues-can attend doctor's appointments with the patient, supervise medication, hire and oversee home health assistants, or find and evaluate assisted-living or nursing homes. Typical cost: $80 to $200 an hour (and rarely covered by insurance). The National Association of Professional Geriatric Care Managers (www.caremanager.org) can provide local referrals.
Joel Kazis, 53, of New York arranged for a Boston geriatric-care manager to work with his parents, who live in Boston. For example, she helped them find a geriatric-care physician and evaluate assisted-living facilities. When they opted for an apartment instead, she found a move coordinator, someone to cook and clean, and made sure grab bars were installed in the bathroom. She even found a geriatric-care manager to assist the couple when they spent a few months in Florida. His folks, Kazis says, "needed additional resources, and I needed someone familiar with those resources."
Even nursing home and assisted living companies are jumping on board. For example, the Sears Methodist Retirement System in Abilene, Texas, a nonprofit that runs 12 senior living facilities, is currently testing a high-tech service called Seniors Safe@Home. It uses sensors to monitor whether clients have gotten out of bed, used the bathroom, or visited the fridge. Automated systems dispense medications and monitor conditions like blood pressure and blood sugar levels. Data are screened by a call center and uploaded to a website that clients' children can access.
Boomerang Parents. Forget kids who head straight from college to their old bedrooms. Out of 36 million people age 65 or older, about 13 percent live with their adult children or other family members. But the older generation requires a lot more hand-holding. When Greco moved in with her daughter, she was generally in good health, except for severe arthritis and high blood pressure. Over the years, however, Erdmann has found herself doing more and more for her mother. She manages her mother's three medications, watching to make sure she takes each one. Always fearful of falls, she's never far away when her mother bathes. She drives Greco to doctor's appointments, fills out all her medical forms, and spends hours on the phone every month sorting out billing or insurance problems. Meanwhile, she says, her mother has started to suffer from short-term memory loss, and Erdmann has become less comfortable leaving her alone during the day.
Such gradual increases in care are one reason why many adult children don't think of themselves as caregivers. "They say, 'I'm just doing what any good daughter would do,'" says Gail Gibson Hunt, president and CEO of the National Alliance for Caregiving, a nonprofit coalition of caregiving organizations. As a result, she says, adult children don't think to look for help. That omission can have serious consequences for both the caregiver and the aging parents, since stress can harm caregiver health and lead to a lower quality of care.
One thing that can help ease the strain is proper training. The American Red Cross, hospitals, and nonprofit aging organizations offer courses for family caregivers that cover safety, nutrition, and legal and financial issues. Professional help can also be a godsend. Roughly 1.4 million people receive home-health services, sometimes paid for by Medicare, Medicaid, HMOs, or other insurance. Senior-living companies are also starting to offer home-based services. In Ohio, Kendal Corp., a Pennsylvania firm that owns 14 senior communities, has launched Kendal at Home, which, for an initial membership fee starting at $7,600, plus a monthly fee of $294, offers a lifetime guarantee to provide long-term care services.
States and federal lawmakers are recognizing the home trend. Vermont, for example, is already paying some family members $10 an hour to provide home care to Medicaid recipients who might otherwise be in nursing homes. Other states are following suit, and the federal Centers for Medicare and Medicaid Services has designated $1.75 billion in grants to encourage them. Most of these programs, however, are in the early stages and apply only to very low-income seniors.
Perhaps more immediately helpful for relieving the strain is respite care, someone to take over while caregivers take a deserved break. Some people arrange for a relative or paid caregiver to come. Others find assisted-living facilities that will take a family member for a short stay. In some communities, local Area Agencies on Aging pay for respite care.
Senior Cohousing. In 2002, a group of longtime friends in Davis, Calif., all in their 70s and 80s, sat down to talk about the future. Many had worked together at the University of California-Davis. Now, they faced a new challenge: "We wanted to spend our last years together and help each other as we aged,"says John Jungerman, 84, a retired physics professor from UC-Davis.
Jungerman and his friends are getting their wish. After four years of negotiating for property, lobbying the city council for residential zoning, and coordinating with architects and builders, he and his wife, Nancy, were the first of 13 residents to move into Glacier Circle, the country's first elder cohousing community. Residents own their apartment or townhome (there are eight attached residences, all wheelchair accessible) and a portion of a separate common house that includes a kitchen, dining and living rooms, and a housekeeper's apartment. They also share chores and maintenance expenses. "We've been talking about sharing the cost of a nurse if several of us needed one," he says. Each home has its own kitchen, but residents share three meals a week-two of them whipped up by a professional cook-together in the common house. On Thursdays, it's potluck. In addition to spontaneous after-dinner socializing and movies, the residents meet every week to discuss new furniture for the common house, hiring a gardener, or business at hand. At least 20 other groups around the country are starting their own cohousing communities.
Like any group endeavor, cohousing presents daunting challenges. First, it's costly. Each family spent $350,000 to $450,000. Estate planning is tricky. All want heirs to be able to sell the property without changing the spirit of the community. And making group decisions can be difficult. "We definitely have more work on our hands than people who move into big retirement facilities," says Jungerman. "But it keeps our lives feeling meaningful."
Assisted Living, Continuing Care. In 2003, Nina Liebman, 65, of New York City gave her 93-year-old father, Jules Roskin, a choice: move to an assisted-living facility or agree to a home health aide. The Albuquerque, N.M., resident suffered from congestive heart failure and Liebman felt it was no longer safe for him to live alone. He opted for a health aide, who gave him his medications and helped him with dressing and grooming, as well as shopping, cooking, and cleaning. But he resented the lack of privacy. Next he agreed to try assisted living. The decision turned out to be the right one, allowing Roskin to keep his fiercely guarded privacy until his death in 2004. "People came when he needed them," says Liebman. "Someone could help him, but then he could be by himself. That was very important to him."
An assisted-living residence charges a monthly fee-the national average is $2,968, according to MetLife-for room, board, and services such as laundry, transportation, housekeeping, and medication management. The fee goes up for higher levels of service, such as meals delivered to your apartment or dementia care.
Some assisted-living homes are part of continuing-care retirement communities. These promise to care for residents for the remainder of their lives; they move to the various facilities as their needs demand. Unlike assisted-living facilities, most CCRCs don't simply charge rent and a service fee. Instead, seniors pay a hefty entrance fee, which can range from $70,000 to more than $1 million. In addition, there is a monthly fee that may or may not increase as the resident's level of care goes up. If this sounds like an insurance policy, there's a reason: Most CCRCs are actually considered a form of insurance and are overseen by state insurance regulators, as well as by state agencies that license assisted-living and nursing homes. Because of the complexity of fee structures, if you and your parent decide to go with assisted living or a CCRC, it's critical to understand what it will cost, what services are provided, and how those costs will change if your parent needs additional care.
The security of assisted living and CCRCs can bring adult children peace of mind, while older parents often like the idea of no home upkeep. "I'd maintained a home for 62 years, and I really didn't want the responsibility anymore," says Nellie Snook, 84, who moved into a CCRC in Chapel Hill, N.C., in 2004. But assisted living and CCRCs may not suit those who don't like crowds. And you must be in good health to join. Most CCRCs accept only new residents who can start off in independent living.
Nursing homes. After Kathleen Berthay's husband died four years ago, Berthay moved to a 140-bed nursing home in Tupelo, Miss. At the time, Berthay, who is blind, could reasonably have expected to live the rest of her days in a shared, hospital-style room eating meals delivered on a tray. Instead, as part of a "Green House" project launched by Mississippi Methodist Senior Services in Tupelo, Berthay, 81, moved out of the home in 2003 and into a house she shares with just nine other people. Berthay eats with her housemates at a common table in the dining room, sharing meals prepared by a certified nurses'aide who also cleans the house and helps Berthay and other residents with bathing, dressing, and other daily tasks. When doctors and physical therapists visit, they ring the doorbell.
"This is the best thing that ever happened to old people," Berthay says. The Green Houses-so named to connote growth and life-have yielded impressive results since they first opened in 2003. "The Green Houses are revolutionizing the model of care within nursing homes," says Rosalie Kane, a professor of public health at the University of Minnesota. Her research shows that compared with nursing home residents, people living in the Green Houses score better on measures of quality of life and show slower declines in their abilities to perform daily tasks.
Efforts are underway to launch Green House projects in every state. Traditional nursing homes are scrambling to keep up. Some are starting to offer private rooms, replacing dinner trays with dining room buffets, and training staff to be more autonomous. At a growing number of nursing homes run by Beverly Living and Golden Living, hospital-style care is giving way to "neighborhoods," where large institutions are subdivided into groups of 12 to 24 residents, who take part in choosing music or planning activities and share family-style meals in small dining rooms. And the companies are aiming to have the same staff take care of the same residents all the time.
When considering nursing homes, look for these types of efforts to make care more homey and personal. "You don't have to trade in your ticket to quality of life to get a certain level of personal care and monitoring of healthcare," says Kane. That's a lesson that adult children are learning in their search for the best old-age care. "All the time I was helping my father, I was thinking, 'What if this were me? Would I want to be in a place like this?'" says Liebman. The answers that baby boomers arrive at will no doubt shape the future of aging as they demand better care for their parents and, eventually, for themselves.
AT YOUR SERVICE
These websites offer tips and advice for adult children caring for aging parents:
www.eldercare.gov The federal Eldercare Locator can put caregivers in touch with local senior services.
www.familycaregiving101.org Two associations teamed up to help new caregivers learn the ins and outs of their roles.
www.longtermcare.gov This new federal website spells out senior living alternatives and the various payment options.
www.medicare.gov/nhcompare Compare nursing home quality data and find state inspection agencies at this federal website.
www.strengthforcaring.com Connect and chat with other caregivers at this site, sponsored by Johnson & Johnson.
This story appears in the November 27, 2006 print edition of U.S. News & World Report.