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Communities struggle to care for elderly, alone at home

The Wall Street Journal logo The Wall Street Journal 9/25/2015 Jennifer Levitz
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STOCKHOLM, MAINE—At least three times a night during much of the long, harsh northern winter, Aldea Campbell gets out of bed, steps into her slippers, and descends a flight of frighteningly steep, narrow wooden stairs to the cellar to fill her wood-burning stove. She’s 82, a widow, and has lived in her 102-year-old house near the Canadian border for almost six decades.

She burns wood because she can’t afford enough oil to get through the cold months. When her arthritis is bad, she gingerly maneuvers the steps sideways to keep from falling. But still, she slipped on the stairs twice last year, once badly hurting her tailbone. “It happened so fast,” she said.

Such predicaments are increasingly common in Maine: the grayest, most rural state in the U.S., with housing among the oldest in the nation. Maine has another distinction: it is among the first states to experience challenges from a growing number of seniors who are “aging in place”—remaining independent rather than relocating to nursing homes or moving in with grown children.

More elderly across the nation are aging at home for a variety of reasons: they prefer to and are healthy enough to stay; they can’t afford other options such as assisted living; and states in some cases have imposed policies to limit nursing home stays paid for by Medicaid, which is a major funder of long-term institutional health care for older Americans.

But aging in place is proving difficult in places where the population is growing older, supportive services are scarce, houses are in disrepair and younger people who can assist have moved away. As a result, elderly people who live at home are having to rely more on neighbors—who sometimes are elderly, too—and local nonprofits and public agencies are starting to feel the strain from increasing requests for help.

“It’s a huge issue—it couldn’t be bigger,” said Lenard Kaye, director of the University of Maine Center on Aging. “Ninety-nine percent of older adults say they want to stay right where they are until they’ve taken their last breath, but that doesn’t mean they are continuing to remain safe and remain well.”

Medicaid, a network of aging services under the federal Older Americans Act and state and community programs have long provided some assistance to elderly people who want to remain independent. But in general, people who choose to age at home “have always been on their own,” said Donna Wagner, dean of the New Mexico State University College of Health and Social Services and a researcher on aging. “I don’t think we’ve had a clear contract with the elderly,” she said.

Public and private entities are increasingly trying to offer more services but demand is outstripping supply because the population is aging, she said. In some poorer areas, services can be hard to find at all, she said. “This philosophy of remaining independent with the help of community-based services has been a little oversold,” said Ms. Wagner. “Lots of people have a hard time doing it.”

Maine, Pennsylvania, Kentucky and New York are among states now boosting programs that help the elderly live at home, while churches and communities are also implementing more initiatives.

There were 26.8 million households headed by someone 65 and older in 2013, up 24% from 10 years earlier, according to the U.S. Census. Households headed by a person 75 and older grew 13% to 12.2 million. Meanwhile, the number of older people living in institutions or with relatives has declined. Living alone has supplanted living with relatives as the most common scenario for women 75 and over, according to the Census’s official blog in July, describing a “gray revolution in living arrangements.”

The Centers for Disease Control and Prevention defines “aging in place” as “the ability to live in one’s own home and community safely, independently, and comfortably, regardless of age, income, or ability level.” These people may need assistance, but staying home, whether in the family residence or a downsized version, is a paramount goal. A 2010 AARP survey found 88% of respondents 65 and older said they wanted to stay in their current residence as long as possible.

Seniors remaining rooted isn’t new, but the accelerated growth of the senior population, with an estimated 10,000 baby boomers turning 65 each day, is fueling new questions about whether communities are prepared, Kathy Greenlee, the assistant secretary for aging at the U.S. Department of Health and Human Services, said in an interview.

“There is almost general agreement that this is a worthy goal,” Ms. Greenlee said. “The hard part is, how do we build the infrastructure that best supports it?” Challenges range from adequate housing to transportation, and “unfortunately they are very large issues,” she said.

Policy makers are grappling with these issues particularly in the northeast, which has the oldest median age of any U.S. region, as well as housing rife with hazards.

Starting in 2017, Pennsylvania will contract with managed-care organizations that will help tens of thousands of seniors eligible for long-term care under Medicaid remain at home. The goal is to direct a far larger portion of funds away from more costly nursing homes to efforts—even something as basic as adding a ramp to a house—that help the elderly live safely at home, said Pennsylvania Human Services Secretary Ted Dallas.

The New York 2015-16 budget, which took effect on April 1, includes one of the state’s largest investments ever in assisting seniors at home: more than $65 million for programs, from transportation to respite services for family caregivers. Kentucky is, for the first time, planning a program to deliver meals five days a week to the homes of nearly 4,000 low-income seniors.

© Jason Paige Smith for The Wall Street Journal

In Maine, where the median age was 43.9 years in 2013, compared with 37.6 for the nation—a new law authorizes the state to ask voters in November to borrow $15 million to build affordable homes for seniors and repair older dwellings occupied by the elderly. In August, the state also said it would put an additional $3.2 million into home services for the elderly to reduce waiting lists, such as the 900 people who were waiting for basic help, from meal preparation to housekeeping assistance.

While polls show people prefer to age at home, some seniors have few other options: 88% of U.S. residents in assisted living pay privately, and the national median monthly rent is north of $3,500, according to the Assisted Living Federation of America and Genworth Financial Inc.

The number of people 65 and over living in nursing homes fell nearly 20% in the 2010 Census, from 10 years earlier, in part as states limited costly institutional stays. Maine, for instance, in 1994 adopted tougher criteria for admissions, meaning people had to be frailer than before that year to qualify for nursing-home stays funded by Medicaid.

Maine officials are now looking at whether they need to re-evaluate the eligibility criteria. “Frankly it gives me great pause today when I look at, on a case-by-case basis, some of the individuals being denied access to nursing facilities,” Maine Department of Health and Human Services Commissioner Mary Mayhew said in an interview.

The delicate balance of protecting seniors while helping them stay independent is perhaps most evident in isolated places like Aroostook County, Maine’s northernmost county.

A stunning but economically struggling region of rolling green hills, forests and potato farms, Aroostook is a long drive and a stark contrast from southern Maine, where more affluent retirees flock to quaint towns on the rocky coast. It is larger than Connecticut and Rhode Island combined, but has less than 2% of their population. The closing of a military base in 1994 and automation in logging and farming drained jobs and population to 69,447 residents in 2014 from a peak of 106,000 in 1960, according to Census estimates. Unemployment is among the highest in Maine.

A shortage of opportunity has driven away the young. Between 2000 and 2013, Aroostook lost nearly 20% of its population aged 22 to 44 years old, according to Census estimates. Meanwhile, the number of people 65 and over grew about 11%.

“There’s such a state of out-migration that it’s difficult to fill certain positions, and that impacts the elderly,” said Aroostook County Administrator Douglas Beaulieu. Finding home-health workers in the county is a “constant challenge,” said Lisa Fuller, vice president of business development at VNA Home Health Hospice, a Maine organization.

More than 1,600 elderly households are on a waiting list to have insulation installed or broken or faulty heating systems fixed or replaced; potentially dangerous furnaces are a key worry, said Jim Baillargeon, senior manager for Aroostook County Action Program Inc., a local nonprofit organization. Many will be on the waiting list for years, he said.

Instead, the elderly in Aroostook often rely on other older people, making for a fragile support system. In the town of Mars Hill, 90-year-old Marion Miller lives alone and gets around using a walker after three falls. She counts on her son, Stillman, for day-to-day help. But he is 68, weakened from a heart attack in May, and said he worries about his ability to assist.

At the edge of the North Maine Woods, in Portage Lake, (pop. 391), Judy Moreau, who is 70 with heart problems, relies on her 80-year-old neighbor—who himself wears a pacemaker—to drive her the 42 winding miles to the doctor. Last year, the car veered into a ditch, leaving the pair shaken and flagging down passersby for help.

Many Aroostook seniors would be candidates for assisted living or downsizing into an apartment, but either can’t afford those options or can’t find them nearby, said Mr. Beaulieu. Many also resist moving out of pride, rugged Maine individualism and the hook of history: it is where they were born and raised, and where their ancestors and spouses are buried.

A dearth of young people forced the school to close in the town of Stockholm (pop. 253) in 2004. But Mrs. Campbell, a retired factory worker, is determined to remain in the home and community where she has attended the same Catholic parish for 56 years and raised six children.

Her husband, who was a mechanic, died in 2003. Three of her grown children still live in the area, but she values her independence too much to move in with them. Publicly subsidized affordable housing complexes in Caribou, the closest large town, have waiting lists, as does the nursing home there.

Mrs. Campbell had help with minor repairs from a Massachusetts church group that recently visited the county to assist seniors. But her routine overall is a “struggle,” she said, particularly staying warm in a remote region where consumers rely on expensive heating oil to warm their drafty old homes in cold seasons that run from October to May.

Mrs. Campbell received public fuel assistance last year, but exhausted it by midwinter, forcing her to heat with wood. Her budget is strained in part because she is already paying off a loan she took to fix a crumbling chimney. Most homes that receive fuel assistance don’t get enough oil to make it through the winter, said a spokeswoman for the Maine State Housing Authority, which administers the fuel assistance, which is meant to be supplemental help.

Public agencies are feeling the strain. The Presque Isle Fire Department, in a small city in Aroostook County, is getting “a lot more” calls from elderly residents than ever before, said Adam Rider, deputy chief. Falls are a common issue, as are problems caused by older residents burning wood to save money on oil, he said.

In the town of Van Buren, across the river from Canada, Robertine and Fernand Levesque are also finding it increasingly arduous to stay in the community where they have lived all their lives.

Married for 59 years, the couple has one adult child who lives five hours away. Mrs. Levesque, who is 78, acts as caregiver to her husband, also 78, who once ran a chain-saw business catering to loggers but who now struggles to walk after a heart attack and stroke. With a monthly income of $1,091, they “hardly have anything left after paying bills,” and struggle to pay property taxes, let alone home repairs, she said.

Having “worked hard all our lives,” they were reluctant to seek help, but now rely on food stamps and recently put their name on a waiting list with a nonprofit agency for a new roof, Mrs. Levesque said. Their current roof is deteriorating; “every time it rains, I pray,” she said.

Still, she can’t imagine going to a nursing home. “I don’t want to go now for sure, and he doesn’t want to go,” she said. “I’ll take care of him here for as long as I can.”

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