HONORING A PARENT
A caregiver's story of strength, honor and the Native American way
BY:ANNE HOSANSKY
Photography by Fran Collin
"Indian people try to respect and honor their elders," says Juana Casillas, a Native American who lives by that philosophy herself. Several weekends a month, she drives 75 miles from her Tuscon, Arizona, home to the town of Sells, capital of the Tohono O'Odham Nation Reservation, to help her ailing mother.
Juana's 87-year-old widowed mother, Salomina Martinez (or Sallie, as she's known), suffers from acute osteoporosis as well as high blood pressure and has become increasingly frail over the past six years. "The osteoporosis has her so bent over it pushes on her intestines and she has abdominal pain," Juana says. Her mother has to use a walker to get around her house, and a wheelchair when she's outside for any length of time. "Mom pretty much needs twenty-four-hour assistance with daily activities. She can get to the bathroom okay during the day, but evenings she requires help. There's not much strength in her hands or legs, so it's not safe for her to cook when she's alone." Arizona's Long Term Health Care System provides aides on weekdays, but during weekends and evenings Sallie must depend on the family.
Fortunately, Juana-who's 63 and divorced-isn't the sole family caregiver. "We all need to share in the caregiver needs," she says of her four siblings. "We try to take turns helping." Juana's sister, Ramona, lives next door to their mother and manages day-to-day tasks. She makes sure a healthcare worker shows up and keeps track of medical appointments. Two of their brothers, Ernest and Robert, also live on the reservation, which is the second largest within the United States, equal in size to Connecticut. They check on such things as the mail and whether the cooler is working. Juana's oldest brother, David, tries to commute from Phoenix-some 120 miles away-one weekend each month.
"I share the caring on weekends," says Juana, who is program coordinator/Native American liaison for the Rural Health Office at the University of Arizona College of Public Health in Tucson. "And sometimes during the week, depending on what's needed. I also check on Mom when my job gives me the opportunity to do something on the reservation."
During weekends at her mother's home, Juana does the laundry, waters the plants and cooks enough food for four or six meals. "That way Mom has leftovers and there are extras for when my brothers come." Ramona is a "great organizer but doesn't like to cook," Juana says with a laugh.
Though Sallie has a good appetite, the menu is very limited. She can't eat dairy because of lactose intolerance, and she has to restrict her intake of pasta, vegetables and fruits because of intestinal problems. "Pinto beans are a staple of Indian menus," Juana says, but her mother can no longer eat them or the chili dishes popular in the Southwest "which Mom used to love."
Worried about her mother's continuing weight loss, Juana cooks protein-rich foods such as steaks and pork chops. Breakfast and lunch are delivered by the Tribe's Senior Services Program, a "Meals On Wheels-type thing," Juana says. On Sundays, Juana takes her mother to the Catholic church and to visit family. "But there aren't a great many places to go on the reservation."
Despite her physical frailty, Juana proudly notes that Sallie's mind is still sharp. She keeps up with the news on TV, and knows what each of her numerous progeny is doing, including Juana's six grandchildren. "Mom's still somewhat engaged in life," says Juana, "but it's a struggle for her because she doesn't have much stamina."
Not wanting their mother to be confined to the house, Juana and her siblings include her at birthday parties, holiday celebrations and even the wakes and funerals she wants to attend. "It's a matter of what we're each doing individually and incorporating things where Mom can participate. We all go to her house or bring her to one of ours."
Still, there's ever more need to plan for continual coverage since Sallie is increasingly in need of more care. "We try to schedule a month at a time, and to take turns so it's not one person every weekend," Juana explains. "But work and other obligations come up," so someone who's scheduled for a particular time may not be able to make it. "You always have to be flexible and make adjustments," Juana says.
Sometimes there's strife about this among the siblings. For example, one of them may accidentally not be informed of a change in plans. "We try to keep everyone in the loop, but maybe they didn't understand something or the communication wasn't there," Juana admits. As a result, there can be anger and hurt feelings, the "Why wasn't I told?" reaction. At those times, Juana says, "someone has to be the peacekeeper, and I'm the oldest." She talks to both parties or gets them to talk it out. "One thing we've become aware of and work harder at is that we can't afford to be angry with one another for any length of time because we all have the same goal-to help Mom."
Fortunately, they have financial assistance. "The Indian Health Services Hospital serves our reservation, so most of the medical services are covered." Native Americans, Juana explains, "have dual membership-as members of the tribe and as United States citizens-so we're covered by Medicare and Medicaid." But the system doesn't work too well with little things, she finds. Some things take too long or aren't done right, such as a cane which was standard issue and too large for their mother.
When it comes to larger items, like a new bed and reclining chair, they all chip in. Several years ago, when the sweltering Arizona heat became a problem for Sallie and prevented her from sitting in her garden as usual, they bought her an air conditioner. Costs for these items are shared "proportionately," Juana says, taking into account one brother's being out of work for a while.
The focus on their mother has changed the way the sisters and brothers relate to one another. "Where we would have engaged over our children, now we engage over Mom. We're always talking about what's happening with her."
This family caring and sharing used to be typical of Indian families, Juana says. Growing up on the reservation, she lived an "extended family experience, where you take care of one another." It's a different story these days, she finds. "There's not much opportunity on the reservation, so you have to leave for education or jobs. That breaks up the family. We hate to put our elders in nursing homes, but sometimes we have to, though there's the desire to have them close."
Having been married twice, Juana moved to where her husbands' jobs took her, so she's lived much of her adult life in other parts of the country. When she finally moved back to Tucson 20 years ago, she and her mother had to get reacquainted. "We'd each had a life," Juana says. "Now it's a different kind of knowing each other, because she's more the child." Echoing a refrain that cuts across cultural lines, she says: "The mother-daughter relationship is becoming reversed."