Growing Older / Liz Taylor
Rural caregivers face extra challenges

E-mail this article Print this article Search archive Most read articles Most e-mailed articles

Other links More Liz Taylor

I had to get out my map just to see where they came from.

Although I've lived in Washington most of my life, I'd never heard of Bickleton, Skokomish, Mabton, Roosevelt or Curlew.

We met during the recent National Governors Association's annual conference in Seattle, when, in a special Northwest Family Caregiving Town Meeting, more than 200 guests from throughout the Northwest — and 13 governors — shared personal stories in an effort to find solutions and new policies for family caregivers. (You can see our conversation on KCTS-TV at 9 p.m. Sept. 9 and again at 11:30 a.m. Sept. 12.)

After the town meeting, I met with 15 of the participants at a luncheon hosted by the Washington Health Foundation. Although their ages covered a 57-year spectrum, from 25 to 82, their common bond was that each cares for a family member — parent, grandparent or spouse — in a rural community. As tough as it is to care for someone in a city, caregiving in rural areas is a tune unto itself.

One woman was living in a small cabin down a rut-filled, long driveway, without telephone or e-mail, when her husband was diagnosed with brain tumors. Luckily, her local hospital was large enough to tell her about available resources; unluckily, she lived too far away to be served by any. Her brother showed up from Oregon with his four kids to help. Without access to housing or a hotel, they pitched a tent in the yard for the first two months. Between the wife, her brother and a neighbor, they worked 60-hour weeks caring for her husband until he died.

A parish nurse in a small community told about a man with damaged kidneys who drives 100 miles round-trip three times a week to a dialysis center. There's a closer center nearby, but he can't go there because it's across the county line.

Another client is probably abusing his demented wife and himself by refusing help because, in that refrain many of us hear so often, "There's nothing wrong with us! Leave us alone!" They have no living relatives to intervene. The closest Adult Protective Services office is 150 miles away. The nurse doesn't have the evidence to persuade a beleaguered, overworked state agency to make the long trip to investigate.

A case manager employed by the state to help families in two large counties find resources and solve problems talked about her enormous caseload. Case managers in urban areas say the same. But in rural communities, distance magnifies the problem.

Few retirement communities, assisted-living facilities, adult day services, home-care agencies or nursing homes exist in rural areas, so the choices a family might have in an urban center are simply not available. One woman has cared for years for her husband who had a stroke. She can't find anyone willing to come in at night, so she hires help by day (while she sleeps), then she takes the night shift.
 
A constant refrain from those on Medicaid is the bureaucracy: The state wants flexibility from federal regulations, they said, yet "doesn't allow us the flexibility to come up with common sense, practical solutions. We could make it work much better if the state would give us the funding and let us figure it out."

Transportation is another major bell-ringer. Because bus and Paratransit systems are usually absent in rural areas, getting to the doctor or drugstore requires a car. In winter, these trips can be perilous, especially for older drivers. People hired to work in the home might drive 80 or 90 miles — one way and unpaid — to get there. When their cars break down, they don't come.

Scarce resources, heavy bureaucracy, lack of public transportation and long distances make family caregiving in rural communities difficult — surprisingly more difficult than many city folk probably realize.

But there are advantages, too. In small towns — where neighbors know neighbors — families aren't alone in their time of need.

"The word spread about my husband," one woman said, "and neighbors just started popping in with food and offers of help."

Lacking an abundance of resources, rural people learn to make do, using their common sense and ingenuity to solve problems.

"In coming years, as more and more of us become caregivers," says Lorna Stone of the Washington Health Foundation, "we all have a lot to learn from the rural tradition of neighbors helping neighbors. They use what they have and pitch in together to create solutions."

And, like families everywhere, these rural caregivers said, despite the difficulties, caring for a loved one was life-affirming and one of the most meaningful experiences of their lives.

Rural areas offer few steady jobs for professional caregivers. A young woman quit her job at a nursing home in the city to care for her grandmother in a tiny town in Eastern Washington — either that, or the grandmother was going to have to move to a nursing home three hours away from her husband. The grandmother was recovering nicely when she was diagnosed with cancer and quickly died. Without income, housing or a job, the young woman finally found work at a nursing home 60 miles away.

Liz Taylor's column runs Mondays in the Northwest Life section. A specialist on aging and long-term care, she consults with individuals and teaches workshops on how to plan for one's aging — and aging parents. E-mail her at growingolder@seattletimes.com or write to P.O. Box 11601, Bainbridge Island, WA 98110. You can see all of her columns at www.seattletimes.com/growingolder/.