Helping Caregivers Get What They Need Most: Time

Published with permission from Take Care! Summer 2008, National Family Caregivers Association

It seems that just about every list of tips for family caregivers ends with the earnest and oft-repeated advice, “Take time to care for yourself.” NFCA gives this advice as well, while recognizing that the problem, of course, is time — or, rather, the lack of it.

No one who hasn’t walked in a family caregiver’s shoes can begin to imagine how time-intensive caregiving is. The irony is that when caregivers are asked to list the demands on their time, giving care is not always the biggest item on the list. Huge chunks of time get swallowed up by a mountain of other tasks, from detangling insurance and medical snarls to tracking down trustworthy resources for everything from skilled nursing help to home repairs.
 
Lately, some glimmers of hope have appeared, in the form of entrepreneurial organizations that are finding new ways to meet these challenges.
 
Healthcare Advocacy, Doctor Visit Companion, and More
 
Dealing with insurance companies and medical providers is one of the most time-intensive — and exasperating — time robbers family caregivers face. Tedious automated phone systems, complex coverage guidelines, endless paperwork, and indifferent service fuel the frustration. One company has made that problem its passion.
 
For an annual fee of $365, subscribers to Health Proponent get 24/7 access to a personal advocate (usually a registered nurse), backed by a team of doctors, seasoned insurance specialists, and healthcare experts. The fee covers assistance for you, your spouse, dependent children, parents, and parents-in-law. Together, these caregiver proponents use their skills to provide a wide variety of services, including navigating medical care (helping you find a doctor and get an appointment) and being your advocate with your health insurance company.
 
While the firm is relatively new, its parent company, Health Advocate, has been providing these services to millions of corporate employees for several years. Sometimes, the solutions to insurance problems are simple. “One of the biggest reasons for denial is incomplete paperwork,” says Health Proponent CEO Marty Rosen. “Getting approval can be as easy as resubmitting the form.” Even if a denial is justified, the team moves on to strategies a caregiver might not know about, have time to pursue, or have the clout to carry off.
 
If the issue is medical equipment or drugs, for example, the team may explore government and community programs and grants, work to get discounts from equipment providers, or investigate pharmaceutical trials. When it comes to finding and coordinating physicians and medical tests, the idea is to get patients to the right place at the right time without what Rosen terms “medical ping-ponging” — the bounced around feeling all family caregivers know well. In the end, one of the most valuable benefits of this kind of support is the huge relief of knowing that you’re not alone.
 
Finding Elusive Help
 
Most caregivers can’t count the number of times well-meaning people have urged them, “Get help! You simply can’t do it all yourself!” As if the idea had never occurred to us. Saying that is easy. Doing it isn’t. Unless you can afford to phone the nearest home care agency and order up help as needed, you face a bewildering, disjointed, and time-consuming labyrinth of community services, government programs, and support organizations.
 
If you do find time to investigate these options, you’re likely to encounter a lot of dead ends. One service is for seniors only, not the disabled (or vice-versa). Another says your income is too high to qualify (yet too low to afford paid home care). A third helpfully sends out a stack of paperwork that demands more time and information gathering than a tax return. As the population ages, this problem is getting more attention. Local governments in particular are under increasing pressure to put coordinated programs, policies and services in place for the rising tide of seniors. This growing community focus is likely to benefit caregivers as a whole.
 
Some people, however, aren’t waiting around for that to happen; they’re taking matters into their own hands. One movement, dubbed “intentional communities” is gaining traction across the country. The idea is for residents of a neighborhood or community to form their own nonprofit membership organization to secure the resources they’ll need to “age in place.” Everyone pays a fee to be eligible for services through the “village,” as some of these communities are called.
 
One of the most successful of these communities is Beacon Hill Village, founded by longtime residents of Boston’s Beacon Hill neighborhood. Services available with a subscription to the Village include housecleaning, errands, computer problem- solving, bill paying, transportation, weekly grocery shopping, home-delivered meals, medical advocacy and more. By partnering with providers, the Village is able to obtain these services for members at anywhere from 10 percent to 50 percent off the going rate. Annual membership for Beacon Hill Village costs $580 per person and $850 per household. Low- and moderate-income residents pay a significantly reduced fee and receive credit that can be used toward programs and services.
 
HouseWorks, a home care company based in Boston, Massachusetts, and Bethesda, Maryland, has been a strategic partner and the preferred home care provider for Beacon Hill Village since its inception in 2002. In addition to personal care, companionship, medication assistance, and skilled care, House- Works also offers home modification services in the Boston area. HouseWorks is now involved in educating groups across the country about the intentional community movement. “We are witnessing a social revolution,” says Andrea Cohen, HouseWorks’ CEO. “Seniors and their adult children are much clearer about what they want and need to age in place, and intentional communities are a response to this trend.”
 
In response to the thousands of phone calls and e-mails that have poured in during the past two years, Beacon Hill Village sponsored a conference in the spring of 2007 for community leaders from 27 states who were interested in learning how to organize their own village. Since late 2007, seven villages similar to Beacon Hill Village have opened across the country and more than 80 such villages are in the planning stages.
 
The cost to join these other villages varies by area. At Capitol Hill Village in Washington, D.C., for instance, membership costs $500 per year for an individual and $750 per year for a household. The organization’s goal is to provide as many services as feasible by volunteers, thereby keeping total costs to the members as low as possible. With efforts like these leading the way, workable solutions for time starved family caregivers may be on the horizon. Who knows? Maybe we’ll even be able to reach the impossible dream: time to care for the caregiver.
 
Linda Taubenreuther and her husband, Harald, live in Southern California, where they’re partners in a home-based freelance writing and editing firm. Harald was diagnosed with MS in 1988. Linda also writes for the National Family Caregivers Association.