The Candidates as Caregivers

As the presidential candidates crisscrossed the early-primary states in recent months, Americans facing the challenges of long-term care might have wondered about the contenders' own experiences with their parents. And more important, how have those experiences helped shape the candidates' policies on the way families provide and receive long-term care?

Universally, the candidates have made the best of the varied situations they've been dealt. And from these encounters have emerged a variety of proposals that range from neighborhood networks to many ways government should or shouldn't help.

The candidates' personal accounts and policy statements, mostly collected during their campaign stops around New Hampshire, largely reflect the national trend of older people choosing to live at home as long as possible. Some candidates' parents have moved in with them; some live apart; one lives in another country; one lived on Medicaid; and in one case, thank you, the candidate's 95-year-old mother not only lives independently but also actively campaigns for her son.

Put simply, the candidates’ experiences—from Mike Huckabee, who witnessed an extended period of private care nearly exhaust his parents’ savings, to Hillary Clinton, who moved her 88-year-old mother into her Washington home—reflect the complexity and the demands of caring for America’s aging population. Most of these families have confronted the growing challenge physically, emotionally and financially.

Unlike the average American, however, most of the candidates have not had to make decisions about caring for family members based primarily on finances—a fact not lost on Sen. Joe Biden, D-Del., whose widowed mother, Jean, lives with him.

“She’s 90 years old. I can afford it. And my wife is there and my family is there,” Biden, 65, said during the AARP Divided We Fail Forum in Iowa. “But what about those folks who can’t [afford private care], and their son or daughter has to leave a job?”

More than 30 million American adults find ways to provide care at home, which is estimated by AARP to be worth $350 billion a year. That raises tough issues—how communities can fund much-needed in-home services, whether family caretakers should be compensated for their financial and emotional sacrifices, and if so, how.

Sen. John McCain, R-Ariz., hasn’t personally faced the issue of caring for an older parent. His father, John, died suddenly in 1981, and when not campaigning for him, his mother, Roberta, 95, lives alone in Washington where “she makes all the decisions herself,” says McCain, 71.

Decisions about the care of older family members should remain within each family, he says, and “any way we can help caregivers [offset costs through tax credits or other financial incentives] we should. But it needs to be part of an overall policy regarding health care.”

Several candidates have released specific policy proposals. One is former Democratic Sen. John Edwards, 54, whose “Declaration of Independence for Older Americans” is committed, he says, to helping this group “live independently, with choice over their health care, financial security and lifestyle.”

The lengthy proposal includes Medicaid and Medicare reforms aimed at allowing people to choose care at home; support for adult day care and other less expensive alternatives to nursing homes; and providing supportive services and transportation options that help people to continue living at home.

Edwards’ parents, Bobbie and Wallace, live on their own in Robbins, N.C. But, says Edwards, his wife Elizabeth’s parents, Vince and Elizabeth Anania, “are where we’ve seen the struggles.” In their 80s, both have cognitive problems. Vince suffered a stroke several years ago.

“They’re not able to care for themselves,” says Edwards. “They’ve lived in Florida and in Chapel Hill, where we live. They’ve been in a long-term care facility and in an apartment, where we provide support. They want to be as independent as they possibly can be.

“We’re seeing a lot of the same things that a lot of families face in this country, and we’re seeing it up-close and personal.”

Democratic Sen. Barack Obama’s parents, Barack and Ann, died young. He says, however, that being raised largely by his grandparents in Hawaii gave him insight into issues facing older Americans: “I grew up with my grandparents for a big chunk of my teenage years, and I understand how important dignity and choice are for elderly Americans, and the importance of family taking care of each other.”

As an Illinois state senator, he worked for “more support for home care and other avenues that will allow seniors to participate in their communities and make their own decisions about where they want to live and how they want to live.”

Obama’s plan “Fulfilling Our Covenant With Seniors” includes financial security; affordable, quality health care; housing, energy and food assistance; strengthening Medicaid; and protection from abuse and fraud, particularly regarding long-term care insurance. Obama, 46, also says he plans to propose tax code changes that would benefit family caregivers who often “are making substantial contributions without a lot of help.”

Caregiving experience for Sen. Christopher Dodd, D-Conn., has come not through his parents but through his brother, Nick, 59, since he suffered a stroke years ago. “I talked with my family and with Nick and his doctors to determine how to give Nick the best care possible while he recuperated, and we decided that living with me and my family was the best option,” says Dodd, 63.

Dodd authored the Family and Medical Leave Act of 1993, which allows workers to take up to 12 weeks off to care for a sick family member. In his current plan, “A Secure, Dignified Retirement for Every Senior,” Dodd proposes investment in community-based alternatives to help people who want to remain at home; support for family caregivers; one-stop access for long-term care information; and programs to combat elder abuse, neglect and exploitation.

Sen. Hillary Clinton, D-N.Y., hasn’t released her position on health issues specific to older Americans, but she says it will be shaped by her mother’s experience. After Clinton’s father, Hugh, died in 1993, her mother, Dorothy, wanted to remain independent for as long as possible. She had her own home in Arkansas, but getting around was a problem. “She couldn’t always be asking people to take her places. I think that was what really convinced her that she should come and live with us” in Washington, says Clinton, 60.

“We’ve got to do more to help people stay in their own homes, get more assistance,” she says. “We have to have a program to really make long-term care insurance affordable and available. We need to look at the least restrictive alternative for people—in their homes, in an assisted living center, in one of these naturally occurring retirement communities where people get services but they can stay where they’ve been living.”

Asked if he has been involved in decisions about care for an older parent, GOP candidate Rudy Giuliani says, “Oh sure, my mom.” Despite declining health in the last year and a half of her life—on Sept. 11, 2001, she was reportedly unaware of the attacks on New York or her son’s response as mayor—Giuliani’s mother, Helen, remained in a Manhattan apartment until she died at age 92 in 2002. His father, Harold, died in 1981.

Though Giuliani, 63, hasn’t released specifics, he says he supports reforms that would increase long-term care options, including in-home care. He would achieve that partly by improving and expanding tax-free health savings accounts, broadening access to them by simplifying rules and regulations so that account holders can use the funds to get insurance coverage that meets their needs.

State government is generally the groundbreaker for action on long-term care, and some candidates say that as president they would draw on their experience as governors.

As Republican governor of Massachusetts, Mitt Romney signed into law a measure for offsetting the cost of home health care by providing support for family members who take in older relatives. “Our seniors home care plan provided funding for home care that turned out to be about two-thirds as much as nursing home care,” says Romney, 60. “But you really don’t do it for the [government] savings. You do it because people are healthier and happier if they are able to remain at home.”

Former Arkansas Gov. Mike Huckabee, R, has both personal and governmental experience with housing issues for older Americans. Toward the end of their lives, his parents, Dorsey and Mae, were in assisted living facilities, which they paid for by selling their home. His mother later moved to a nursing home. “By the time my mother died,” says Huckabee, 52, “she was about 10 months away from running out of savings to pay for long-term care.”

“In Arkansas, we were the first state to run a pilot project—Project IndependentChoices—where you could live in a facility or with a relative, and the state would reimburse [the family member] for the cost of care.”

Most people decided to stay in their homes or with a family member. “That program has a 98 percent approval rate,” he says. “And it was actually cheaper to operate” than nursing homes.

“The elderly want to live at home,” Huckabee says. “They want someone they know to help them with their baths and their meals. They’d prefer to be with a family member. But it’s hard on [the caregiver] because you have to stay home from work. Our plan was very successful. I’d like to see it go national.”

New Mexico Gov. Bill Richardson’s father was diagnosed with Alzheimer’s in 1969, before most of the public was familiar with the disease, particularly in Mexico where William Richardson lived. The Democratic candidate, 60, says it was a difficult time; his father required round-the-clock nursing care at home until he died in 1972. His mother, 93, now requires constant care and lives with the governor’s sister, a doctor in Mexico City.

His family experience led him to develop his “Independence at Home” plan to allow older Americans to remain in their homes and receive in-home health care under Medicare, Richardson says. “Senior citizens should be able to live out their lives with dignity, in their own homes and be allowed to make key health care decisions in conjunction with their doctor, not a third party.”

Rep. Tom Tancredo, R-Colo., lacks the financial resources of most presidential candidates. “Neither my brother nor I are independently wealthy,” he says. Tancredo, 62, experienced the financial and emotional stress of providing care for older parents until his father, Jerry, died four years ago and his mother, Adeline, died a year ago, both in their 90s.

“Dad was in a private nursing home and it exhausted everything they had. It just took all their savings,” Tancredo says. “They had sold their home sometime earlier. There was simply nothing left.”

When his mother could no longer care for herself, she moved into an assisted living facility, then finally into a hospice after qualifying for Medicaid.

Tancredo supports the Medicaid system, despite what he calls the vagaries of state regulations. “The challenge we all have is to reduce the cost of medical care,” he says.

Tancredo’s fellow House member Duncan Hunter, R-Calif., had a different experience. Hunter says his father, Robert, cared for his semi-comatose mother, Lola, for almost 20 years. She died in 1989 at the age of 88; Hunter’s father died in 2006 at 90.

“My father built a hospital room in his house and took care of my mother every day until she passed,” Hunter says. Medicare paid for some of the medical supplies, but his father paid for 24-hour nursing care.

Hunter, 59, says the government needs to be financially supportive of older Americans to make sure they have access to first-rate care and help those without means to obtain medical care, but “the government can never replace the loving hands of family. If the government took over all care, I think we’d see a break in the family bonds between generations.”

“From my experience with my mom, I believe if you have the government do everything, you’ll have socialized medicine with massive costs and lower quality of care,” Hunter says. “Family is one way of reducing costs. If Uncle Sam pays, the cost of everything will go up.”

Former Sen. Mike Gravel, D-Alaska, sees things differently. His mother, Marie, was diagnosed with Parkinson’s disease about 30 years ago, not long after his father, Alphonse, died of heart failure. He moved his mother to New York to enter an experimental drug program.

“Unfortunately, the drug didn’t work,” says Gravel, 77. “So we brought her back home to Massachusetts, and she lived with my brother, and then we finally had to put her into a [hospice]. It was heartbreaking.

“As part of our health program, we need better funding of our hospices—though they should remain private,” Gravel adds. “Think what we could do if we weren’t squandering our money on this war. Think what we could have done to make the elderly more comfortable in their declining years.”

Former Sen. Fred Thompson, R-Tenn., Rep. Dennis Kucinich, D-Ohio, and Rep. Ron Paul, R-Tex., didn’t respond to requests for interviews and for information about their families and their positions on long-term care. On a campaign website, Kucinich cites his support for the amended Older Americans Act of 2006 as evidence of support for “the best possible physical and mental health, suitable housing, long-term care services (with special attention to those who wish to stay in their homes and for their caregivers) … and efficient community services.”

Frank Cook and Pat Remick are journalists based in Portsmouth, N.H.