Photo: Chuck Schockweiler pours a liquid lunch into a feeding tube for his wife, Rosalie. They’ve helped each other survive the debilitating effects of terminal illness. (Herald-Tribune/Elaine Litherland)
Part 1 of a series
SARASOTA, Fla.— Chuck and Rosalie Schockweiler need no words as they execute a smoothly choreographed routine in their Englewood home.
He rinses her feeding tube and hands it to her; she shakes it dry and attaches it to a port on her abdomen as he dissolves three pills in water. Chuck fetches her liquid lunch as Rosalie places a plastic receptacle in an ingenious homemade stand that Chuck fashioned from PVC pipe and an old battery charger, weighted “with imported stones from the front yard.”
He pours in the solution, and as she feels it flow into her belly, she smiles — the same glorious, sunny smile he first noticed back when they worked at Venice Regional Medical Center, in Venice, Fla. He chases the meds with a can of liquid nutrition Rosalie must have five times daily, filling the tube and responding to her prompt when it’s time for another pour.
Usually, as Rosalie finishes her meal, Chuck gets himself something to eat and they sit together at the dining table. Then they stand, every single time, for a long, satisfying hug.
It’s a process they repeat about every two and a half hours, with two more feeding sessions for medication alone.
Early in the day, it looks easy. But, Chuck admits, evenings are tougher because his energy flags.
The Schockweilers have been married for 14 years. At 66, she has lived for a year and a half with amyotrophic lateral sclerosis, an incurable erosion of the central nervous system that’s also known as ALS, or Lou Gehrig’s disease. And at 71, he has endured countless rounds of chemotherapy for liver cancer.
Rosalie took care of Chuck when his chemo side effects were most debilitating. Now, he says, it’s his turn.
“We both have a terminal illness,” he says. “Whoever lives longer, be that as it may. I don’t know; it will work out. We’re just hanging in there.”
The Schockweilers, like many older couples with health challenges, are determined to stay out of a facility and in their own home as long as they can. But what sets them apart from many retired Floridians — aside from their determination to keep laughing, joking and visiting the occasional tiki bar — is the tight network of people willing and able to help.
Rosalie’s good friend comes by often to take over feedings so Chuck can run errands or work on his boat. A neighbor cuts their grass. Daughters, sisters and church members stand by, along with a close-knit community of fishing buddies, retired police officers and firefighters.
This is the traditional American model of home health care, and it is rapidly fading away.
A New Workforce
Americans are living longer, meaning more health support is required for an extended time. But fewer people have access to the loving, full-time live-in care that Rosalie Schockweiler gets from her husband. Baby boomers have higher rates of divorce and childlessness than their parents — raising the prospect that there will be fewer family members to care for them.
Long-term care specialists agree that helping elders with care in their own homes could be more cost-effective than institutionalization — and it is what most older Americans prefer. But no one seems to know how the home care alternative would work on a larger scale.
A home care revolution — with extended stays at facilities, such as hospitals and nursing homes, diminishing — could be daunting, personally and financially, for many working people who struggle to care for aging parents. It would mean an enormous — and enormously bureaucratic — step beyond asking the nice lady down the street to look in on Mom while you’re at work.
Private-duty aides and home care agencies are expanding nationwide to pick up the slack from what has been a loosely organized, almost spontaneous approach to eldercare by family and friends.
Government-funded programs are scrambling to design networks that make use of this workforce, with the goal of paying less than nursing homes or assisted living facilities would charge.
The rise of for-profit health care providers is no accident; 78 million U.S. boomers are poised to become consumers of these services. Already, some 45 percent of Americans over 65 live alone.
Last year the Franchise Business Review named home health care one of the top five most lucrative franchises in the nation, with net profits averaging 12 percent to 15 percent.
The industry is a major source of new jobs, with an estimated 54 percent of the nation’s 4 million direct care workers employed in home and community settings. By 2018, this share is expected to rise to 66 percent.
But the rush to capitalize on this market could offset a crucial element that has made aging at home a less costly option than nursing and assisted living: a force of more than 66 million unpaid caregivers who do their demanding jobs out of love or obligation alone.
In the move to professionalize a largely informal — sometimes desperately improvised — process, eldercare specialists say, some important questions aren’t being raised.
“What do we want to put in place? Do we want high-quality, person-centered care? Do we really want to make a difference to overburdened family caregivers?” asks Dorie Seavey, director of policy research for the Paraprofessional Healthcare Institute. “Or do we want women quitting their jobs because we have such a poor infrastructure to support their efforts to help their loved ones?”
Larry Polivka, executive director of the Claude Pepper Center at Florida State University, which studies issues in aging, is skeptical about an emerging effort to enlist health maintenance organizations — as Florida is doing — in the business of elder care without more evidence about what works.
“I’m not saying for-profit HMOs can’t do the job,” Polivka says. “But we need to have in place more comparative models so we can contrast and compare and decide what’s best. Instead we’re just rushing pell-mell in one direction or another, depending on which way the wind blows — ignoring the fact that this is going to be one of the hugest issues over the next three decades.”
But Bruce Chernof, president of the SCAN Foundation — a California-based nonprofit that promotes aging with dignity and independence — believes the home care revolution can result in a better quality of life for the next generation of elders.
“The challenge is to not medicalize the entirety of someone’s life,” he says. “How do we build a new system that interacts with the medical system but allows people to have the functionality that they want, as opposed to being framed as a hospital patient?”
The federal government is lined up solidly behind this goal, funding an array of experiments in diverting frail or cognitively impaired elders from traditional end-of-life care at nursing facilities, and trying to make it possible for them to survive with assistance at home.
“All Americans — including people with disabilities and seniors — should be able to live at home with the supports they need, participating in communities that value their contributions — rather than in nursing homes or other institutions,” Health and Human Services Secretary Kathleen Sebelius said last year.
But it is a long way from “should” to “can.” The cobbled-together care plans that families devise to handle a health crisis — subsidized heavily with their own labor — may not translate easily to government-funded systems operated by an array of for-profit service providers.
The challenges are steep:
• Aside from promising pilot projects, few states have shown real progress in setting up viable, large-scale home care networks that offer quality care and realize tangible savings.
• The dollars available for elder care won’t just be stretched thin as the baby boomers age. The total amount of funding available is almost sure to be sliced as the “Greatest Generation” leaves the stage and numerous boomers begin to draw on their entitlements.
• Professionals in the home care field predict that families will continue to bear a larger share of the burden — in dollars where possible and in hands-on availability where needed.
For unpaid caregivers, quitting or scaling back their jobs can seem like an expedient, less costly way of making sure they meet their family obligations. But they should think long and hard before taking such a drastic step, according to research by the MetLife Mature Market Institute.
An institute study of more than 1,000 family caregivers over the age of 50 found that the lifetime effect of lost wages, Social Security benefits and retirement savings comes to more than $300,000 for the average caregiver.
In trying to make sure a parent or spouse is safe and comfortable, says MetLife Institute research director John Migliaccio, it can be easy to make a decision that may prove devastating financially. About 25 percent of all adult children in the United States are responsible for the wellbeing of an older relative, he says, and the cost of their dropping out of the workforce came to $3 trillion in 2008 dollars.
“That’s a significant economic impact that goes unrecorded,” he adds. “Potentially, the costs are much higher.”
Meanwhile, little attention has been paid to the growing medical sophistication of what family caregivers are being asked to do, says Susan Reinhard, vice president for public policy at AARP.
According to the organization’s 2012 report, “Home Alone: Family Caregivers Providing Complex Chronic Care,” these unpaid friends and relatives are doing the work not of personal aides, but of highly trained health care providers.
“More than half of them are giving five or more medications, and more than 25 percent are giving 10 or more injections,” Reinhard says. “About 35 percent of them are doing wound care, sterile dressings, colostomy care. These are things that make nursing students tremble the first time they do it. And here we’re saying, ‘Go home and do this to your mom.’ ”
It would be hard to calculate the value of care provided in homes like the Schockweilers’.
Rosalie’s voice is nearly gone; she relies on her expressive face, lively hand gestures, pen and paper and an iPad to make her point.
“I believe God put us in each other’s life for a reason. We take care of each other, and our weakness makes us strong,” she writes on lined yellow paper. “We don’t understand how people cannot believe in God. It is amazing how I can help myself, and all the things I still do.”
Rosalie, an ex-New Yorker, and Chuck, a retired police officer from Chicago, plan to carry on, Chuck says, “as long as possible. I tell my buddies, ‘When I go, I want to check out in my La-Z-Boy chair.’ ”
He wants them to strap him in, put the chair on his boat and light it all on fire, “like a Viking,” out in the Gulf of Mexico.
He and Rosalie laugh, clearly more comfortable talking about the hereafter than the here and now.
“Once they tell you you have a terminal illness and you adjust to that, it’s easier to deal,” Chuck says. “You can kind of joke about it.”
Barbara Peters Smith wrote this article for the Sarasota Herald Tribune as a John A. Hartford Foundation Journalist in Aging Fellow, a collaboration of New America Media, MetLife Foundation and the Gerontological Society of America. Copyright © 2013 HeraldTribune.com.
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