Finding Help Across the River: Caregiving in Remote Areas
By Paula McCarron

I might live on an island, but I'm not an island," says Gayle Adkinson over radio phone from Hinchinbrook Island, southwest of Cordova, Alaska. Adkinson and her family are the only year- round residents on the island. Others come and go seasonally for activities such as hunting or commercial fishing. Adkinson says, "Others may think this is an isolated way to live but I view it as peaceful and quiet."

Adkinson is a family caregiver and describes herself as being in the "early stages" of caregiving for her 79-year-old father-in-law, who has lived on Hinchinbrook for the past 20 years. He is showing signs of memory loss and changes in his behavior, although he does not have a diagnosis of Alzheimer's, according to Adkinson.

Gayle Adkinson has many of the same concerns as other family caregivers, as well as concerns about the particular caregiving challenges that come with living in the rural to remote areas of Alaska.

A bit of background information is helpful to better understand life in Alaska and the people who live there. The name of the state comes from the Aleut word "Alyeska," meaning "great land." It is a name well deserved. Alaska is more than twice the size of Texas. It has 39 mountain ranges, 100,000 glaciers, 3,000 rivers, and over three million lakes. Only 10 percent of the state is accessible via road system.

About half of the state's 600,000 residents live in Anchorage. The other half live in rural to remote communities, which are often accessible only by small plane or boat, weather permitting. Many of those communities have no skilled nursing care facilities, hospitals or assisted living homes, so illness often means not only leaving one's home in order to receive care but also leaving one's family, culture and community.

Adkinson wonders how she will cope if and when her father-in-law's health status changes. She has already begun to make adaptations to ensure his safety and well-being. "I began to see signs that things were changing. Like when he was felling trees, he wasn't making the cuts right. It was getting dangerous so we bought an oil stove," she says.

While keeping a watchful eye, Adkinson helps her father-in-law by doing things like baking his bread; arranging for his medical appointments, which involve travel to Anchorage; and gathering health information from the Internet.

"I try to take it one day at a time while keeping one eye on the future," she says. She gets support from the staff members of the Alzheimer's Disease Resource Agency based in Anchorage. "There are times it helps to talk with someone about what I'm going through or what he is going through. Sometimes I question myself. Am I imagining these things?"

In addition to reaching out for support, she maintains a positive attitude by caring for her animals, listening to music, and keeping occupied with various projects. "Above all, I remember this is the life I've chosen and it is my choice to be helping my father-in-law out," she says.

Adkinson's experience, like the caregiving experiences of other family caregivers, is shaped by many different factors. Some of those factors include how one defines family, family expectations, the needs and health status of a loved one, the roles various family members fulfill, where one lives, and the availability of health care services. Culture and spiritual beliefs play a role as well, along with other factors too numerous to list.

Marilyn Castel's experience of being a family caregiver was very much shaped by these factors. Castel lives in Dillingham, the largest community (pop. 2,500) in the area known as the Bristol Bay. She was the primary caregiver for her grandmother.

Marilyn Castel is an Alaska native. Like the majority of the people living in Bristol Bay, she is Yup'ik. The Yup'ik people are one of eleven distinct Alaska native cultures. She says the Alaska native people believe in respecting their elders. "Whatever an elder wants, we will try to do everything and anything to make it possible," she says.

Castel moved into her grandmother's home, but eventually home care was no longer possible. Her grandmother was moved to Anchorage, about 400 air miles away, where she lived until the time of her death.

Surrounding Dillingham, there are 7,500 people living in nearly 35 villages spread over 40,000 square miles. These families, like Castel, know all too well about the challenges of providing home care for an ailing loved one.

In the villages, the community health aide is the person who provides a vital link to medical help. Community health aides offer first aid; report symptoms to physicians by phone, radio or computer; follow orders to the extent possible; and provide health education. They do amazing things under incredible circumstances.

Beyond the services of the community health aide, families may seek the help of a personal care attendant who can offer "hands on" care or offer periods of respite. Finding a personal care attendant who is available for hire in these small communities can be as arduous a task as it is for families living in more populated areas.

Christine DeCourtney has explored ways for elders to remain in their communities rather than being taken to places far removed from their families and culture. DeCourtney works with the Bristol Bay Area Health Corporation, and says the Bristol Bay area, like much of the country, is faced with meeting the needs of an aging population that requires medical care, home-based services, and the help of the community.

By sharing in the activities of daily life and the traditions of the culture, community members can lend much needed support, comfort, and practical assistance to family caregivers. One such tradition is the steam bath, known as the maqi. Marilyn Castel says she goes into the steam bath with people she trusts. "It is a cleansing time; a time to relax. We can share our problems. It is a time to laugh and to visit." She acknowledges the steam bath gives caregivers a time to renew themselves. "We need self-care. It's important if we are going to help others."

Community members also may lend support by sharing their resources. "Plants and animals provide our food," says Castel. "So we then share whatever food there is with others. Sharing is always done in a time of illness or death because there may be no one in the family who can go hunt." Along with sharing meat, community members may help to smoke fish, pick berries, or harvest herbs.

The sharing of resources can be seen by the way in which the residents of Dillingham have embraced the opening of the area's first assisted living home, Marrulut Eniit (Yup'ik for Grandmother's House). The home opened its doors three years ago and ever since, the freezers have been filled with salmon, moose, and caribou donated by the community.

Castel is now employed with Marrulut Eniit and is happy to be caring for elders who will be able to remain in their own community and close to family. She sees there is much to be learned from the elders, who have a deep sense of faith. "It seems they are able to look beyond difficulties and even cope with pain," she says. She hopes that by remaining near to their families, there will be a greater opportunity for younger people, including herself, to learn these lessons of spiritual strength.

Family caregivers like Gayle Adkinson and Marilyn Castel who live in rural or remote areas face undeniable challenges in caring for loved ones. At the same time, they are confronted by many of the same concerns that confront family caregivers living in the cities, towns, suburbs, and other rural communities across the United States. Some of those concerns include the need for information, resources, and access to health care services. There is a need for reliable and qualified health care workers; for available health care facilities; and for the support of other family members, employers, friends, and the faith community.

"Who will cross the river with me?" Christine DeCourtney says Alaska native elders may ask this question when speaking of illness or an impending death.

"Who will cross the river with me?" It is a question that is also applicable to family caregivers, no matter where they may live.

Paula McCarron is a freelance writer living in Alaska. She has been involved in nursing home, hospice, and home-based care for more than 20 years.