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Part I. Mary Sweet | July 21, 2013

The oldest state faces a full-grown predicament

A Portland Press Herald/Maine Sunday Telegram examination has found that the state isn't doing enough to meet the needs of its elderly residents – and is even less prepared for the onslaught of aging baby boomers yet to come.

Kelley Bouchard

| Staff Writer
[email protected]

Barbara Weaver, 69, of Owls Head helps Mary Sweet, 81, of Camden take her blood pressure. Weaver helps Mary with housekeeping and rides about once a week. Shawn Patrick Ouellette / Staff Photographer

Like many Mainers, Mary Sweet worked hard, saved for retirement and even put some money away for long-term care.


ow 81, she’s fighting to survive on $1,103-a-month Social Security checks, Medicare and MaineCare following the deaths of her husband and son in the past decade. Her own mounting health problems have drained her $80,000 nest egg, burned through $25,000 in long-term care insurance and left her unable to walk without her four-pronged cane. She no longer drives.

Mary Sweet

Mary Sweet, 81, along with financial difficulties is dealing with health issues including a heart condition, vision problems and numbing neuropathy that affects her hands and feet.

Shawn Patrick Ouellette / Staff Photographer

Mary Sweet

Sweet finds herself increasingly isolated and struggling to maintain her health, her independence and her tidy mobile home in Camden, with occasional help from her grandson, a friend and a personal care aide. She recently canceled her daily newspaper to save money, and she’s thinking about dropping cable TV, too.

“It’s a month-to-month struggle,” she says. “It used to be I thought I was middle class, but now I’m just above poverty level. Being an old senior citizen isn’t fun anymore.”

Mary Sweet’s circumstances are all too common in what is now the oldest state in the nation.

Thousands of Maine seniors are struggling to cope with the realities of aging, living on limited incomes with inadequate support. Many are isolated in rural towns without transportation. Others are stacked up on waiting lists for housing or home care services. Still more are dependent on family caregivers, who grapple with emotional and financial burnout from the challenges of helping their loved ones.

Nearly one in seven Maine seniors will be claimed by Alzheimer’s disease. Between now and 2020, the number of Alzheimer’s cases in Maine will rise from 37,000 to 53,000, a 43 percent increase that will fuel a need for more caregivers, more specialized housing and more health care and social services, with financial implications that have already begun to show.

A Portland Press Herald/Maine Sunday Telegram examination of the impacts of Maine’s rapidly aging population shows that the state isn’t taking good care of its seniors now and isn’t prepared for what’s coming down the road.

Maine’s median age – 43.5 years – is the highest in the United States, in part because the state also has a dwindling younger population, according to the U.S. Census. The state’s proportion of people age 65 and older – 17 percent – is second only to Florida’s 18.2 percent.

Maine has the nation’s highest proportion of baby boomers – 29 percent of its 1.3 million residents were born between 1946 and 1964 – and they’re turning 65 at a rate of 18,250 a year, according to AARP Maine.

By 2030, more than 25 percent of Mainers will be 65 or older, magnifying the already serious challenges facing seniors and their communities. This will put Maine on the crest of a worldwide aging trend that’s already contributing to economic, social and political instability across the globe.

In Maine, the onslaught is exposing shortages in transportation, housing, health care, long-term care, family caregiver support and legal protections against elder abuse that promise to cripple the state economically and socially if not addressed soon.

There are pockets of action on senior issues here and there in Maine, but what’s happening isn’t coordinated or consistent across a mostly rural state where many seniors are plagued by poverty and isolation and already lack access to adequate and affordable services.

in her words

an interview with Mary Sweet

Among the Telegram's findings:

Social Security is the only source of income for 33 percent of Mainers age 65 and older, according to an AARP study.

That’s well above the national average of 24 percent, reported by the Social Security Administration. Ten percent of Maine seniors are living at or below the federal poverty level of $11,490 per year for a single person, AARP says. That’s also above the national average of 8.7 percent, according to the U.S. Census Bureau. With severely limited personal resources, seniors’ need for subsidized health care, housing, transportation and other services is expected to skyrocket.

Many seniors who need housing in Maine spend two to three years on local housing authority waiting lists before they get a place to live.

Maine needs more than 8,000 affordable rental housing units for seniors by 2015, according to the Maine State Housing Authority. In the last seven years, however, the authority has helped to fund an average of 135 subsidized senior units per year. Now, there’s a backlog of 13 planned senior housing projects waiting to be built across the state, largely because Gov. Paul LePage stopped authorizing bonds that would provide tax credits for developers.

Forty-three percent of Maine’s nursing homes and 41 percent of assisted-living facilities dependent on MaineCare need renovation or replacement.

But those improvements aren’t being made, in part because MaineCare reimbursements to nursing homes fell short of actual costs by about $29 million in 2011, according to the Maine Health Care Association. Unless something is done about reimbursements, some fear the state will run out of nursing home beds just as the population that needs them rapidly expands.

More than 1,500 Maine seniors are on waiting lists for MaineCare-funded personal and home care services, and the situation is likely to get worse.

State spending on home care actually decreased from $49 million to $47 million in the decade ending in 2010, and with demographic changes driving down the number of working adults, it will be difficult to fill home care jobs that pay $10 to $11 an hour.

An estimated 34,000 Maine seniors are victims of physical, emotional or financial abuse or exploitation each year, according to the Maine Office of Aging and Disability Services.

Most abusers are family members and caregivers, and about 84 percent of cases go unreported. Maine lags behind other states that have made criminal prosecution of elder abuse a priority, according to experts in legal services for seniors.

The lack of public transit or other transportation options in largely rural Maine means that 90 percent of seniors who don’t drive rely on family and friends to get food, health care and other basic needs.

Seniors who lack transportation become vulnerable and socially isolated. Among those who use state-funded home care services, only 36 percent say they can always get to the grocery store when they need to, and only 65 percent can always get to the doctor.

Maine seniors receive critical assistance from 150,000 to 200,000 family and informal caregivers, but four out of five of these caregivers get little or no training and support.

Many caregivers are struggling to cope, not only with the financial and physical demands of caring for a loved one, but also with the emotional toll of watching that loved one’s relentless decline.

Seniors in Maine face a serious shortage of health care workers who are trained to meet their needs.

This can result in misdiagnoses and poor quality of care. Maine had 48 certified geriatric physicians in 2012, when it needed 42 additional practitioners, and it will need a total of 160 by 2030, according to the American Geriatrics Society. Some professionals in the field are trying to raise awareness but fear there will never be enough.

Maine has no effective plan to deal with these and other problems posed by its growing senior population, and its political leadership has failed to take or even call for comprehensive, statewide action on issues that promise to affect every family, community and area of government spending.

Maine’s Office of Aging and Disability Services, a division of the Department of Health and Human Services, bears responsibility for meeting the needs of Maine seniors. Like human services agencies in other states, the aging office receives federal grants under the Older Americans Act of 1965, one of the Great Society reforms enacted during the administration of President Lyndon B. Johnson.

The law stipulates that all seniors are entitled to economic security in their retirement, free and fair access to health care, rehabilitative and long-term care, housing and social services, opportunities for civic and social engagement and freedom from exploitation and abuse.

Despite this stipulation, there is no comprehensive national plan to head off potential consequences of today’s rapidly aging population, though a few federal agencies are addressing it individually.

Every four years, Maine must write a plan for how it will pursue the federal goals in order to obtain funding for senior programs. Each year, the state gets about $10 million, based on its elder population. In fiscal 2013, the state received $8.5 million after $442,000 in sequestration cuts that shut down many senior programs this spring.

The current plan, the “State Plan on Aging 2012-2016,” catalogues a host of problems and challenges facing seniors in its 101 pages. It calls for action in some areas, such as expanding long-term care options, increasing support for family caregivers and stepping up efforts to prevent elder abuse.

But the plan doesn’t require action and two of its deadlines have already been missed. Furthermore, the plan makes it clear that any improvements in senior programs must be made without additional funding, despite the needs of Maine’s growing senior population.

Ricker Hamilton, director of the Office of Aging and Disability Services, calls the plan “a vision” for how senior services should be provided.

“We need to be more effective in getting information out and delivering services,” Hamilton said. “There’s never going to be enough money. It’s always going to be a challenge. We’re looking for incremental change.”

But without more money and a coordinated statewide effort, senior advocates say significant change is unlikely, and it’s reckless to hope for incremental change based on a plan that could sit on a shelf.

“We have to blow the doors off the conversation and find ways to create vibrant, livable communities for all ages,” said Jessica Maurer, executive director of the Maine Association of Area Agencies on Aging, which provide a variety of elder services across Maine. “If we don’t, it has the potential to ruin people’s lives.”

Sarah Thompson learned last summer how difficult it can be for Maine seniors and their families to find services and access programs, especially in the middle of a crisis.

When Thompson was searching for long-term care for her father, William B. Jordan Jr., she found her experience as a Portland school board member and a Maine Medical Center administrator gave her no edge in dealing with a sea of public, private and nonprofit resources and agencies.

“Even for me, feeling connected to my community the way I do, I still felt like I was stranded on an island, trying to get help,” Thompson said. “It was emotionally and physically draining.”

Sarah Thompson

Sarah Thompson of Portland visits with her father William B. Jordan Jr. at the Maine Veterans' Home in Scarborough. Thompson had a difficult time finding long-term care for her father before she found the Maine Veterans' Home.

Shawn Patrick Ouellette / Staff Photographer

Sarah Thompson, a Portland school board member who struggled to find long term care for her father William B. Jordan Jr.

Shawn Patrick Ouellette / Staff Photographer

Jordan, 86, a retired college professor and Portland historian, had lived in his Back Cove apartment for years when a heart condition, memory issues and the last of several falls landed him in the New England Rehabilitation Hospital of Portland. When it was time for him to be discharged, it was clear that he couldn’t return to his home.

Thompson, 43, his primary caregiver among five children, had to find a long-term care facility for him. She checked with the Southern Maine Area Agency on Aging and called a few facilities, but finding an opening and figuring out her father’s finances on her own proved fruitless.

Thankfully, a staff member at New England Rehab found an opening at the Maine Veterans’ Homes in Scarborough. Thompson also hired a lawyer to advise her on how to manage her father’s finances and help him transition out of his apartment.

“Sarah is really my staff of life,” Jordan said. “She’s always been that way, looking after people, very compassionate. And when I get out of line, she hops on me.”

But Thompson wonders, in retrospect, why there was no central place to get clear, complete information about senior housing, transportation and long-term care options available to her father, as well as financial guidance and caregiver support available to her.

“It would be good to have a roadmap for people, so they don’t have to go it alone and they can do the right things and not create problems for themselves,” Thompson said. “There should be a public awareness campaign that lets people know, even if they don’t need help right now, it’s out there.”

Between 150,000 and 200,000 informal caregivers in Maine help their senior friends and relatives in their day-to-day lives.

Their services are worth more than $2 billion a year, the AARP Public Policy Institute estimates. But the responsibility also puts untold strain on families and employers.

Pictured are Sarah Thompson of Portland with her father William B. Jordan Jr. at the Maine Veterans' Home in Scarborough. Shawn Patrick Ouellette / Staff Photographer

The state’s aging plan acknowledges the lack of public awareness about existing senior programs, but Hamilton’s office has already missed two goals set to address the problem.

It was supposed to develop a marketing plan to raise awareness of programs and services available through the five Area Agencies on Aging, located in Augusta, Bangor, Lewiston, Presque Isle and Scarborough.

It was also supposed to call a meeting with municipal officials and develop strategies to raise awareness of community programs that promote the safety and independence of older Mainers.

“There’s a culture among older Mainers against seeking help.”

The office missed June 2013 deadlines for both goals. Work on them is expected to begin this summer. Both efforts will face the tall order of overcoming the deeply ingrained independence of many Mainers.

“There’s a culture among older Mainers against seeking help,” said Larry Gross, executive director of the Southern Maine Area Agency on Aging. “Many don’t see themselves as a person who is elderly. As long as you’re independent, you’re not old.”

It’s also difficult to raise awareness when most people would rather not think about getting older, said Marilyn Gugliucci, director of geriatrics education and research in the College of Osteopathic Medicine at the University of New England.

Gugliucci speaks regularly across the nation on aging issues. In her experience, concern about the senior boom doesn’t translate into action because looming demographics alone aren’t enough to move people.

“Aging isn’t sexy,” Gugliucci said. “People are afraid of it. So we end up chewing on the kneecaps of these issues but not really getting anywhere.”

Maine’s political leaders, headed by Gov. LePage and the Legislature, must act now to rally a statewide response to the state’s aging population, experts say.

Leadership and advocacy are especially critical given the need for additional public investment in programs and resources, and the economic impact of Maine’s aging workforce.

Lori Parham, executive director of AARP Maine, at her office in Portland.

Shawn Patrick Ouellette / Staff Photographer

But so far, there has been no rallying call for statewide action.

Neither Gov. LePage, a Republican, nor leaders of a Democratic-led Legislature, mentioned the challenges of a burgeoning senior population in this year’s State of the State speeches.

Senior issues also were absent from the agenda of the Legislature’s Joint Select Committee on Maine’s Workforce and Economic Future when it met in February. The resulting omnibus bill, L.D. 90, failed to include aging officials or senior advocates on panels that will identify and develop the state’s economic, educational and employment strategies.

“At a basic level, we need to acknowledge that Maine is getting older, and that it poses significant challenges and economic opportunities,” said Lori Parham, executive director of AARP Maine. “The 50-plus demographic should be part of all planning initiatives at the state level, not just the Office of Aging.”

LePage declined a request for an interview to discuss his concerns about Maine’s aging population and his goals to address them. In a written statement, his spokeswoman, Adrienne Bennett, referred to the state’s aging plan and described it as a “vision” supported by both LePage and Department of Health and Human Services Commissioner Mary Mayhew.

“If you choose to share with your readers the comprehensive information within this plan,” Bennett wrote, “it clearly demonstrates a reflection of the concerns and goals of the administration and the good work being conducted by DHHS on behalf of Maine’s older adults.”

Senate President Justin Alfond, D-Portland, said there’s growing awareness among state leaders that seniors are an increasingly vulnerable population and their needs affect nearly every area of the state budget.

Alfond noted the work done by Democrats this session to preserve $41 million in health care programs for more than 80,000 low-income seniors that LePage had targeted for cuts. He also noted that the $4 million workforce bill, mentioned earlier, will provide scholarships for training in high-demand, high-wage jobs such as nursing, which will benefit seniors.

“We’ve addressed some senior issues,” Alfond said. “Do we have more work to do? Absolutely. I look forward to working with (lawmakers from both parties) to come up with a game plan to deal with our senior issues in a thoughtful and comprehensive way so we are no longer reacting from budget to budget.”

House Speaker Mark Eves, D-North Berwick, acknowledged the need for comprehensive action on senior issues at the state level, but he said competing legislative demands have taken priority. A family therapist by profession, Eves said he plans to meet with stakeholders this fall in the hope of developing legislation that may be submitted early next year.

“It’s been on my radar screen for a while,” Eves said. “It’s something everyone can or will relate to, and if we don’t (address it), we get caught in an economic spiral we cannot deny.”

Mary Sweet, 81, of Camden updates her address book at her mobile home.

Shawn Patrick Ouellette / Staff Photographer

Mary Sweet, the senior from Camden, isn’t waiting for state officials to take action.

A former bookkeeper, she’s used to keeping an eye on the bottom line, and she’s still pretty sharp. But she’s never had to fight so hard to keep what little she has. Maintaining her health and her home results in regular battles.

Mary Sweet

Mary Sweet 81, of Camden looks over her shopping list as Barbara Weaver 69, of Owls Head looks over Sweet's coupons while helping her shop. Weaver helps Sweet with housekeeping and rides about once a week.

Shawn Patrick Ouellette / Staff Photographer

Mary Sweet

Mary Sweet 81, of Camden is helped to her home by Barbara Weaver 69, of Owls Head after the two went shopping. Weaver helps Sweet with housekeeping and rides about once a week.

Shawn Patrick Ouellette / Staff Photographer

She has a heart condition, vision problems and numbing neuropathy that has resulted in several painful foot operations and turned her fingers into uncooperative “sticks.” She pays a personal and home care aide $45 per week to help her with things she can no longer do herself, like vacuum, wash windows and drive to medical appointments.

When her doctor prescribed special shoes that cost about $1,000 a pair, she was shocked to learn that Medicare wouldn’t cover them because she doesn’t have diabetes. She made phone calls and got her doctor involved in the negotiations, but she still had to pay for the shoes herself.

Taking care of her mobile home has become a major challenge. She recently cashed in her last IRA to pay for a questionable plumbing job. The initial estimate was $2,500 to replace all of her water pipes. She was skeptical when the estimate jumped to $3,000, but she paid the bill anyway.

Then she realized that the new system wasn’t hooked to her water meter, so she called the plumber to finish the job. He said it would cost her extra, but she stood her ground and he did the work without charging her more.

When the Veterans Administration learned that she cashed in her last IRA, she lost a $57-a-month pension benefit she had been receiving because her husband served in World War II. She’s still fighting to get that back.

“I don’t have my husband to fight for me, or my son, so I have to fight for myself,” she said. “And other people that got money, you know, they just don’t understand. They do their own thing, but they just don’t understand.”

Next Story >>

Irving Faunce

Irving Faunce

The burden of long-term care

Nursing home administrator Irving Faunce of Wilton saw what his own mother endured in the last years of her life. Today, he says the state is ill-prepared financially for the coming wave of people who will require extended geriatric care.

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