WESTMINSTER -- For Lynn Sussman-Orenstein, talking about her profession is therapeutic. Comments by the Johns Hopkins Hospital clinical nurse, who specializes in caring for AIDS patients, were punctuated with tears.
"Never apologize for crying," she said Saturday to about 25 people at "Caring for AIDS Patients in Our Community," a seminar sponsored by Carroll Hospice. "You need compassion, but you don't have to be a saint.
"You are dealing with patients angry at being stricken in their most productive years," said the Hampstead resident. "In the prime of their lives, they must wear diapers and be spoon-fed. No one wants that kind of dependence."
Many seminar participants are volunteers at Carroll Hospice, a non-profit agency that cares for the terminally ill. Hospice has several AIDS patients.
Jim Rowe, Western Maryland regional health coordinator and the Carroll County Health Department's case manager for AIDS, offers hospice volunteers two training sessions each year on caring for AIDS patients.
"People should not think AIDS is not here," said Rowe. "I have been in the front lines for seven years and it keeps getting worse. Our patients are getting younger and younger."
Rowe now cares for 15 patients in the county -- five with AIDS and 10 who have the human immunodeficiency virus.
"There are many more who have tested positive and go elsewhere for treatment," he said.
David McMasters, a senior clinical nurse at Johns Hopkins Hospital who has worked with AIDS patients for 10 years, called AIDS a "public health emergency."
"At least 50 percent of the patient population now are women," McMasters said at the seminar. "I am very concerned about teens, too. We are not sending them messages to get them to pay attention."
McMasters gave the group "the nuts and bolts of infection control," describing opportunistic diseases, which can take root when a person's immune system fails.
"AIDS is unpredictable," he said. "Each patient goes down a different path."
He also described universal precautions for care-givers.
"Basic nursing practices have not changed with this disease," he said. "We still use the same principles to protect ourselves. If you are not sure, put the gloves on. If you suspect a patient has tuberculosis, wear a mask."
By the time a patient comes to hospice, the primary goal for the care-giver should be comfort, he said. "Try to create a family setting where people can feel safe."
HIV dementia affects about 30 percent to 50 percent of the HIV population, said Sussman-Orenstein.
"We need to provide safety and keep a patient oriented," she said.
Nutrition is a constant challenge because anxiety and depression contribute to loss of appetite, she said. Keep meals small and try to make eating a social event, she said. Also, ask families to share the patient's history.
"It helps give a personality to the patient and helps the family keep memories alive," she said.
Both speakers cautioned against being judgmental.
"What's called for here is not judgment, but a compassionate response," said McMasters.
Kathleen A. Bare, coordinator of Volunteer Services for Carroll Hospice, said the organization has had no problem finding volunteers willing to care for AIDS patients.