Laurie Kappe was halfway around the world, vacationing in Australia, when she got the call we all dread: her stepmother had died and her aging father, who had disguised or waved off signs of his own declining health, desperately needed help.
“It was completely crazy,” Kappe said.
With her father, Lee Gould, in South Florida, one sister in California and another in New York, Kappe and her family were completely caught off guard.
“We had not realized with all that distance that he really had been declining because in the last year he had always been putting his wife on the phone. We’d say, ‘How you doing, Daddy?’ and he’d say, ‘Talk to Annie.’ Or if we asked him something, he’d say he lost his hearing aid,” she explained. “We did not know his health had declined that precipitously. Then it was like, oh my God, what are we going to do?”
With busy lives and sometimes many miles between us, we can all appreciate Kappe’s crisis. Americans are living longer than ever before, with the number of people over 65 projected to rise to 72 million, or 20 percent of the population, by 2030. And while the National Institutes for Health found in 2012 that older Americans are in far better shape financially than they were 35 years ago, they are in worse health, with rates of obesity steadily ticking upwards.
To avoid a desperate scramble when trouble arises, experts say families should periodically assess aging loved ones. And the holidays provide a perfect opportunity.
“With the holidays, people are together,” explained Lisa Miele, director of the Aging and Disability Resource Center for Miami’s Alliance on Aging ( www.allianceforaging.org). “But it’s a difficult topic to address, so I would say take small steps.”
Some signs to look for can be obvious, and observed without stirring up emotions. Others can be more subtle, but just as telling, experts say.
“The major point is to try and be aware, become aware and try to observe and very non-intrusively ask questions,” said Paulo Chalves, director of the Benjamin Leon Jr. Family Center of Geriatric Research and Education at Florida International University. “I would say to do more on the observing and less on asking directly.”
Among the physical signs he suggests watching for: an unsteady gait, balance problems or trouble getting in and out of a chair, which can lead to more serious issues. Also important are signs of frailty such as weight loss, slow walking speed and decline in physical activity. Activities critical to quality of life are also important signposts, such as trouble shopping, preparing meals or making phone calls.
In conversation, it’s important to look at a person’s decision-making ability, he said.
“This will become apparent in conversation, but it’s important to just be aware and not jump to a conclusion,” he warned. “There will be age-related changes to cognition and that’s not necessarily bad.”
Chalves’ own grandmother will turn 100 in January and he believes it’s important to tread lightly. If they’re able, he said, let loved ones make their own decisions.
“We may be middle-aged and healthy people, but we have no idea what it is to live at 90, with some diseases and vulnerability and increasing challenges,” he said. “With my grandmother, I try to understand and be respectful and give her space.”
Luckily for Kappe, when her father needed help, she had an old high school friend to turn to: Nancy Stein, an adjunct professor at the University of Miami with a Ph.D. in epidemiology who started Seniority Matters ( www.senioritymatters.com) after struggling with her own parents’ final years.
“Within two days, I got home and [Stein] set up a conference call and helped us piece together a whole system,” Kappe said.
Stein found Gould a geriatric case manager to oversee and coordinate home caregivers and doctors’ visits. She enlisted a grief counselor to help him deal with his wife’s death. She discovered that as a veteran of the Korean War, Gould was entitled to benefits neither he nor his daughters knew he had. She found a financial planner specializing in elder issues who advised the family on how to maximize and protect Gould’s investments, and best use his pension from his job as a New York City School teacher.
She also found ways to make his home safer and easier to live in, including a lift chair. She told the three daughters to get her dad an iPad so he could Skype with them and begin reading again. She advised them to divide the labor, with one sister overseeing medical, another financial and a third legal. And then she created a journal so they could all cross reference and keep track of their father’s needs.
And almost as important, Kappe said, Stein provided reassurance and the voice of reason.
“She’d say yes, you’re in crisis now, but it’s going to end. You’re going to figure out a system and not get into screaming matches with your sisters every day.”
And avoiding such hard times, Stein explained, can be as simple as collecting information and having a plan.
“A lot of times people just don’t know what’s available. Yesterday I was talking to the family of a Holocaust survivor and there’s money available for her. People just don’t know.”
Stein became adept at unearthing such hidden benefits when her own parents’ health began to decline. She was in Miami, they were in California. Thankfully, her work in epidemiology had made her an expert at sleuthing.
“To me, old age was always my father plus 10. It was just never going to happen,” she said. Then her mother died, and his health began to decline.
“He didn’t want to move because his life was there. And as a child, your job isn’t to take over. But as his dementia progressed and other things took place in his life, it became clear I wanted to move him here. Which is a big move. Finally, he agreed to do it if he could live on his own. And still date.”
While she was navigating her father’s care, and encountering a labyrinth of services and resources, Stein decided to start Seniority Matters, a network of prescreened services. She offers both free programs vetted by her staff for a do-it-yourself plan, as well as private counseling and a host of resources on her website.
After hosting a seminar for the University of Miami’s human resources department, Stein met Peter Bartow, a project manager in information technologies at the school. Bartow and his siblings had been caring for his 92-year-old stepmother following his father’s death in 1997.
Like many caring for elderly family members, the family had been taking turns and managing well enough after his stepmother, Mary Eileen Bartow, was confined to a wheelchair about five years ago. Her doctor lived next door to her Silver Bluffs house and had graciously made several late night visits. But in July she was hospitalized with pneumonia and the family knew her care required more than a live-in aide and the generosity of her neighbor.
“It gets to the point where it’s too much,” he said.
Stein, he said, “knew precisely who to call.” While she helped the family get a wheelchair ramp, guiding them through the myriad services helped most. One thing Bartow learned: plan ahead.
“My suggestion is you’re heading down this road. Meet someone like Nancy now, because it’s coming. It might not be today, but there will be a crisis and you’ll need to speak to somebody.”
And planning ahead can also avoid problems stemming from family dynamics, which can be exacerbated in times of crisis.
“Family dynamics can bring challenges,” Miele explained. “That’s a big challenge, when the families are not in agreement. So we really try to encourage people to plan ahead and avoid having to make those decisions when a crisis has occurred.”
It is also important for seniors to take an active role in planning. Be part of the conversations, or even instigate conversations, with children and families, Miele advised.
“To maintain their own independence, they need to be involved in the decisions early,” she said. “The way to maintain independence is to accept help.”
Created in 1988, the Alliance on Aging, a nonprofit dedicated to elder care issues in Miami-Dade and Monroe counties, set as its main objective maintaining independence. It offers an array of services including home-delivered meals, recreation, adult daycare, personal care, legal help and transportation. Its network can also provide training, support and respite for caregivers and family members.
For Kappe and her sisters, what she calls the “crisis du jour” has subsided. While they’ve seen their share of home health aides come and go — one left after her father contracted MRSA, another had a car accident and couldn’t get to work — their geriatric case manager kept the ship on course, eventually assembling a reliable team. Gould’s finances are now under control and his legal issues sorted out.
“We just had a very poignant 80th birthday party. And my aunt and 86-year-old uncle with an oxygen tank and my other uncle, who’s 92 with a walker, came. So they were at one end of the table and at the other end were all their caregivers. So I sat at that end and I thought, wow, this is his life now. This is his family, too.”