Concerns Many Face When Caring for Elderly Parents

 As a Unitarian minister for 30 years, Ed Searl has seen firsthand the challenges those under his pastoral care faced with aging parents. So when his own mother and father were experiencing problems, he and his wife, Ellie, came up with an unusual strategy. In January 2013, they moved from their home in the Chicago suburbs into his family’s Delaware home. “I really don’t like nursing homes under the best of circumstances, and I didn’t want my parents to have to endure the indignities that come with those changes,” he says. His father and mother were 97 and 96, respectively, but not in ill health. They were simply showing their ages and requiring a little more care. But Ed’s mother died in June from complications from a C. diff infection she acquired while on post-operative antibiotics. His dad carries on—slower and not as mentally sharp as he once was, but essentially healthy. Serving as on-site, 24-7 caregivers isn’t easy for the Searls, both in their 60s. “There’s a sense of putting about 80 percent of your life on hold,” says Ellie, who works as a freelance book designer. “The commitment has to be really, really strong. It’s kind of a mini-limbo, because you don’t know at what point your life isn’t going to be on hold anymore.”

A Rising Tide

The baby boom generation—that explosion of births in the wake of the Allied victory in World War II and spurred by the national economic prosperity that followed—has long been a significant indicator for economists, politicians and advertisers. From the counter-culture movement of the 1960s to the Reagan Revolution of the 1980s, this massive demographic bulge has moved through the late 20th and early 21st century, affecting everything in its path. One of the biggest concerns, particularly on the economic and political front, was what would happen when boomers hit retirement age. Would the nation’s system of social and financial safety nets withstand the sudden demands of millions of retirees? But what many of those business and political decision makers didn’t realize was that many of the baby boomers’ parents, benefiting from improved living conditions and better health care, would still be around to draw on social welfare and health-care resources.

This combination of factors has created what a report by the Centers for Disease Control and Prevention called “The State of Aging and Health in America 2013” says is “an urgent need” for more services for the oldest in our society. According to the study, current trends will result in the number of Americans over the age of 65 doubling to 72 million over the next 25 years. By 2030, the report suggests, those over the age of 65 will make up approximately 20 percent of the nation’s population. With age comes an increased potential for sickness. Since the 1920s, heart disease and cancer have been the leading causes of death in older adults across all ethnic groups. Today, those illnesses are trailed (in descending order) by chronic lower respiratory diseases, stroke, Alzheimer’s disease, diabetes and a combined category that includes influenza and pneumonia. While many people are living significantly longer than previous generations, this has meant that “long-term care” for chronic health problems has come to mean a much longer term. As a result, many boomers are spending time they expected to be enjoying retirement providing ongoing care for their parents.

A Tale of Two Families

Heather and Richard, a married Middletown couple who requested that their last name not be used, have seen both sides of the coin. Heather and her brother helped their mother through her struggle with cancer nearly a decade ago, and now, she and her husband are dealing with multiple issues with Richard’s parents. In many ways, that is where the similarity ends. Heather’s mother was open-minded, prepared and accommodating to her children during her cancer diagnosis and making final arrangements. In contrast, Richard’s parents, who are facing myriad health problems, including cancer, declining mobility and early-stage Parkinson’s disease, are avoiding help from their six children. “The families are very different in that respect,” Heather says. “My husband’s family is all spread out, and some don’t talk. There’s a lot of threatening to take people out of the will.” 

In addition, her husband, as the youngest of the siblings, doesn’t want to overstep bounds that might offend his brothers and sisters—or possibly obligate them to more care than they’re willing to handle. “His father’s driving is terrifying, but no one has the nerve to speak up and say, ‘You really shouldn’t be driving anymore,’ because that means they’d have to drive him,” Heather says. Her mother-in-law’s bone cancer, meanwhile, has left her unable to walk. “And she’s too proud to be that woman in the scooter, but she can’t drive anymore either because the leg that’s the worst is the driving leg.” When family members attempt to broach the subject of estate planning or extended-care arrangements, they are rebuffed. “If you question Richard’s family about their finances, you’re after their money,” Heather says. Though her journey with her own mother’s illness was more manageable, it had its challenges, too. “I had young kids while taking care of an elderly, sick mother. My kids had to be on the bus at 8 a.m., and sometimes, I had an 8:15 appointment with mom at the [Helen F.] Graham Cancer Center,” she says. “They were in the first and fourth grade, and it was tough trying to balance that. Richard had to turn into super dad.”

Navigating the Family Dynamic

Heather and her brother were fortunate when it came to finances, too. Their mother’s own experiences with estate battles—particularly between her second husband’s children from a previous marriage—made her realize the importance of financial planning. When she became ill, she presented her children with a checkbook and bank account in both their names. After she died, her assets went into a trust that was divided evenly between them. There is also an emotional toll in addition to money and health worries. Just ask Todd Holtz. The Wilmington resident spends most of his time in Downingtown, Pa., looking after his 78-year-old father and managing the care of his 77-year-old mother, who lives in a nursing home because of her Alzheimer’s disease. 

Holtz describes his father as a classic Midwest-born, Korean War veteran descended from German stock—stoic, determined and stubborn. Even when his mother began to lose her memory and became verbally and physically abusive, his father circled the wagons. “His attitude was, ‘We’ll deal with this,’” Holtz says. “He really didn’t want to talk about it too much. He wanted to try to handle stuff. My dad put up a good fight for years, trying to help her even though she was getting violent with him.” Holtz, who is single, tries to find ways to handle the stress. “I don’t know if I’ve really found a process,” he says. “Sometimes, just work, just wrapping your head around something normal. Sometimes, you really have to get out and do stuff, but you still feel like you have to check in and make sure the house isn’t on fire or that he hasn’t fallen down on the floor. I am my father’s son in certain ways, and some therapy and support groups probably wouldn’t be bad for me. I haven’t really gotten there, but maybe I will soon.”

Finding Solutions

But when do you talk to aging parents about their futures? “It’s not a nice thing to think about what’s going to happen to your parents when they get older,” says Joanna Shea, administrator of CARE (Caregiver Assistance, Respite, Education) Delaware. “People just need to sit down and have that family meeting. ‘Say you have a stroke, who do want to make decisions for you, the doctors that are there or us?’ The more proactive we encourage folks to be, believe me, when it happens, it’s much easier to deal with.” Having that initial discussion with parents can be difficult. Outside help can pave the way. “Counselors can’t tell people what to do, but they are good at starting the conversation,” says Lisa Bond, deputy director of the Delaware Division of Services for Aging and Adults with Physical Disabilities (DSAAPD). Consulting a financial adviser can also be beneficial. “There are a number of issues that need to be addressed on the legal and the financial side,” says Bill Denney, a partner at Newton One LLC in Newark. “We’ll ask that question, ‘What do you know about your parents’ planning as it relates to elder care or retirement?’ And that’s the first entrée into whether these adult children have had any dialogue with their parents.” 

Community groups, like the Delaware Aging and Disability Resource Center (www.delawareadrc.com), can aid in the process, she says. “Delaware has a wealth of resources,” Shea says. “We just need to tap into them.” She also suggests that caregivers take advantage of the opportunities for home and respite care in order to take care of themselves. “People have to find balance,” Shea says, especially those caring for parents and kids. “I tell those people to get into support groups and get as much community support as they can, because if the person in the middle doesn’t maintain their sanity, things fall apart.”