Shouldering senior citizens' care

Guardianship: Seeing to decisions for impaired elderly patients in Carroll is a job that requires a firm but loving touch.

February 15, 2004|By Hanah Cho | Hanah Cho,SUN STAFF

Inside a three-bed room at a nursing home in Sykesville, an elderly woman lies alone, a crisp, white sheet covering her frail body, revealing only the 77-year-old's thin face.

Sedated with morphine, the woman sleeps deeply, a tube running from her nose to an oxygen machine beside the bed.

Outside at the nurses' station, Gail Jones consults with an attending nurse before entering the woman's room. She leans over the bed, kisses the woman's forehead and strokes her fine, gray hair.

"I just want you to be comfortable," Jones whispers to the woman who is at the end stage of Alzheimer's disease.

Jones' visit to the Continuum Care nursing home was the third in less than two months. Although she is not a family member or a doctor, Jones has been overseeing the elderly woman's treatment for four years.

As coordinator of Carroll County's adult guardianship program, Jones manages the health care of 26 disabled and chronically ill senior citizens who are no longer capable of making decisions about their lives.

In Maryland, 19 local agencies on aging serve as the guardians of last resort for 716 vulnerable adults, age 65 or older. These adults have been declared incompetent by the courts and have no one else to make life decisions.

In Carroll County, Jones has been the face of the guardianship program since 1989.

Those under Jones' care include clients with Alzheimer's disease, dementia, mental illness, Parkinson's disease and developmental disabilities. In the case of the 77-year-old Alzheimer's patient, Jones knows that the woman is dying. (She declined to reveal the woman's name to protect her privacy and preserve her dignity.)

Jones spends many of her four-day work weeks with a phone pressed to her ear, coordinating her clients' care with doctors, nurses and social workers. She handles funeral arrangements and fields calls from people who are concerned about elderly relatives or friends.

Jones also handles her clients' social needs, which could mean anything from buying clothes to making sure one female client has sneakers with Velcro.

Before any major medical decision, such as surgery or dispensing or withholding medication, Jones consults with at least three physicians and attending nurses. But ultimately, the decision-making burden falls on the 48-year-old Silver Run resident.

"My job is to make their lives as good as it can be for the time they have," Jones said. "When they die, I can't feel bad because we did the best we could."

Jones weighs all the factors, including religion, when she makes decisions about the clients' care. But she falls back on one major consideration: "If it's not going to work, why do it?"

Jan Flora, director of Carroll County's Bureau of Aging, said Jones shows a lot of compassion when she deals with clients.

"Gail does a lot of digging, looking into their history, trying to figure out how an individual felt about life support, what their advance directive might have been," said Flora, who, as head of the bureau, is legally named the clients' guardian. "It's not just a rubber stamp. It's really looking at each of the individuals as people, despite their disability and lack of capacity."

When Jones visited Continuum Care earlier this month, she also checked on five other clients, including an 82-year-old woman named Mary (her last name was not revealed).

"Hey, Sleeping Beauty, do you know what time it is?" Jones asked, when she walked in around noon and found Mary in a nightgown adorned with Santa Claus icons.

"I'm feeling sleepy," Mary answered.

"Mary is usually immaculate with the hair, makeup and earrings," Jones explained, and then told Mary, "I'm not used to seeing you messy."

While Jones brushed Mary's light-brown hair and helped her apply red lipstick, their conversation wandered from how Mary was feeling - "fine" - to whether Mary was eating properly - "I've been eating too much."

After a 25-minute conversation, Mary told Jones: "I love you."

"I love you, too," Jones said as she kissed Mary's forehead.

For the next hour, Jones walked from room to room at the nursing home. She asked her clients about their appetite or their health, even though some were not as responsive as Mary.

Always, though, Jones left them with a kiss on their foreheads.

It is those qualities of kindness and caring that make Jones such a success at her job, Flora said.

"She's able to talk with them, to be present for them and figure out what makes them tick," Flora said. "That is absolutely important and critical when you're dealing with people who are not able to articulate their needs and wants."

Some of the clients have spent numerous years under Jones' care.

Jones said she has seen glimpses of their personalities creep out on good days. On bad days, she has been called by different first names.

"What's neat about this job is the fascinating stories," she said. "Just because they're [legally] incompetent doesn't mean they don't have stories to tell."

And when their lives end, Jones usually takes care of funeral arrangements, too.

In the last three months, four of her clients have died. Among them was the 77-year-old woman with Alzheimer's disease.

Just hours after Jones' last visit, the woman died.

Earlier that day, Jones decided to halt medication that was no longer helping the woman, including iron tablets, vitamin supplements and psychiatric drugs. The tough decision came after several days of consultation with doctors and nurses.

"These are pretty difficult decisions," Jones said that day. "It's the medically correct thing to do."

That night, Jones snuggled in her favorite chair, watched television shows with the mute button on and stayed up later than usual, "listening to the silence," she said.

Last week, Jones reflected on the woman's death.

"She died peacefully, comfortably and without any pain in familiar surroundings."

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