Ho-kai was an unlucky homosexual. He got AIDS. During his treatment, doctors and nurses from Tzu Chi General Hospital went to his home to spend his last Mid-Autumn Festival with him. From the time he first came for treatment until his death less than eight months later, his mother was always prepared to take care of him. The care and concern of the doctors and nurses gave her much emotional support.

Ho-kai had been sick for many days. He coughed, had a fever, and his legs were so weak that his mother had to hold his arm to help him to the toilet. This worried her very much. She had advised her son very early on to see a doctor, but he hesitated. She loved her only son very much and could never force him to go, and so he went on at home like this for several days.

When Ho-kai was too weak to resist any longer, he was taken to the emergency room of Tzu Chi General Hospital. The doctor discovered that his illness was not so simple. Ho-kai's mouth showed a streptococcal infection. He coughed and had a fever. His lungs made odd noises, he could not control his urination, and his legs were paralyzed. X-rays showed that he had pneumonia, although the symptoms were not serious. Since the patient showed other nervous system symptoms, thoracic specialist Dr. Lee Jen-chih consulted neurologist Dr. Chang Tso-wen. The two felt that the case was unusual. Further Blood tests discovered the presence of the HIV virus in the young man's body.

The Truth Is Hard to Reveal

The pneumonia that Dr. Lee diagnosed in Ho-kai was Pneumocystis carinii, a kind that victims of AIDS contract very easily. "I asked everyone to leave the room, and I talked privately with the patient and told him that he had AIDS. Because of his desire to receive treatment, he admitted frankly that he had been infected through homosexual activity and that one of his partners had recently died of AIDS." Dr. Lee carefully traced the history of the patient's sexual experiences.

When Ho-kai first began to feel ill, he was afraid and was unwilling to see a doctor right away. After Dr. Lee told him about his condition, the next step was to tell his family. When Ho-kai's mother heard that the disease was incurable, she panicked and begged the doctor to use the best medicines to treat her son, no matter how much it cost.

When Ho-kai's sister learned that he had this disease, she couldn't help but hold him and cry loudly. However, she tried to console their mother by telling her that researchers in the United States had developed a special medicine which had not yet been brought into Taiwan.

Dr. Lee did not tell Ho-kai's mother the source of his disease. He only told her that there was no special medicine that could cure the disease, and that caregivers had to avoid contact with the patient's blood and other bodily fluids. Since the patient still had psychological difficulties in accepting the fact of his condition, the doctor held his tongue. This was a tacit agreement between himself and the patient.

Three-Sided Support

When social worker Liu Hsiung-lan went to the ward and saw the patient's white-haired mother, she was very surprised. The old woman's husband had just died of cancer in Tzu Chi Hospital a month before, and Ms. Liu wondered why the old woman had shown up again. The husband's long illness had already put the family in financial difficulty, and since the family had no property and no income, they had turned to the hospital department of social services for help. Now the son was in the hospital with AIDS,and this blow was even worse than the economic problems. Since Tzu Chi Hospital was contracted by the Department of Health as the AIDS treatment center for Eastern Taiwan, patients may stay in the hospital and receive treatment entirely free of all charges.

Due to the importance of preventing the spread of the disease, Ms. Liu hoped that by informing Ho-kai and his mother of the danger to sex partners, she could bring the son's partners in for HIV tests. Unfortunately, since Ho-kai was unwilling to cooperate and his mother was unaware of his situation, Ms. Liu's efforts were in vain.

Ms. Liu's evaluation discovered that Ho-kai's family needed help on emotional, financial and caregiving levels. Ho-kai and his family members all maintained an attitude of denial toward his disease, and Ho-kai was especially depressed. In addition, although the patient had a sister, she was already married and so the responsibility for his care fell naturally upon his mother's shoulders. Did she have the strength to take care of her seriously ill son? Ms. Liu and the old woman were both concerned. Fortunately, Ho-kai's mother was willing to follow the nurse's instructions and learn how to take care of him.

After Ho-kai had been in the hospital for over half a month, he was transferred to the AIDS ward at National Taiwan University Hospital in Taipei. It was hoped that with their more complete manpower and specialized experience, NTU Hospital could do a more detailed evaluation of Ho-kai's condition. Ms. Liu and the social worker at NTU Hospital arranged for the transfer very efficiently. Ms. Liu said, "The attitude at NTU Hospital made us feel comfortable about the transfer." Furthermore, nurse Chuang Li-yun of the Six East Ward had the day off that day, and she volunteered to accompany Ho-kai to Taipei. A Tzu Cheng Faith Corps member who lived in Taipei and who drove a taxi picked them up at Sungshan Airport and drove them to the hospital. Ho-kai's family, for whom everything had been arranged and whose plane tickets had been paid for by the department of social services, also went to the hospital. In the month that Ho-kai was in NTU Hospital, Taipei Tzu Chi commissioners also visited him.

Return to Tzu Chi Hospital

When Ho-kai returned to Tzu Chi Hospital for treatment, the AIDS had already invaded his brain cells, resulting in AIDS-related dementia complex. Ho-kai's attending physician, Dr. Lin Hsien-hung, observed that encephalopathy in the white matter caused Ho-kai's intelligence to regress. He would act like a child and his onsciousness was not clear. He was paralyzed from the waist down, and he had diabetes insipidus and a urinary tract infection. The treatment that Dr. Lin gave was to control the disease and to prevent further infection.

Ho-kai went back to the Six East Ward again. This was not the first time that there had been an AIDS patient there, but there were still nurses who had never come in contact with an AIDS patient before. How did they feel? "At first I was scared," said nurse Lin Hsing-tzu, for whom Ho-kai was the first AIDS patient. "Fortunately, chief nurse Tseng Chiu-chen and deputy head nurse Chuang Li-yun both had more experience. They not only instructed us how to care for the patient, they also collected a lot of related information for us to read. When we saw them so confident in taking care of the patient, we also felt more brave. Afterwards, when Ho-kai's mother wasn't there and I had to take care of his excrement or turn him over on his bed, I wasn't afraid at all." The nurses hoped to shoulder some of the responsibility for his family. Whether it was arragning meals for Ho-kai or visiting him at home after his release from the hospital, the nurses continually supported the family.

When Ho-kai's intelligence regressed and his consciousness was unclear, it was very difficult for his mother to take care of him because he constantly told his mother to do this or do that. On several occasions when the nurses entered the ward, they found that although Ho-kai kept calling his mother, the old woman hid in the bathroom and made gestures to the nurses, asking them not to let her son know that she was there. On other occasions, the old woman went to the nurse's station and cried, time and again showing that she was under great mental pressure. The nurses could only console her and be with her.

Chuang Li-yun remembered that one day Ho-kai's mother brought a bag of gold from home. "She told every nurse that entered the ward that the gold had been saved for his wedding, but now he had this disease and would never get well, so this gold was useless. Each of the nurses should take a piece as though they were all her daughters-in-law."

On that day, the old woman's strength and spirits were probably at their lowest point. The nurses thankfully refused her gold and felt very sorry for her. But Ho-kai still kept saying, "Ma, I want to eat* Ma, I want some water* Ma, I want to go to the bathroom*" Even if the old widow had been completely healthy, she still would have had a headache dealing with so many demands.

The Last Mid-Autumn Festival

After Ho-kai left the hospital, his mother went back every month to get his medicine. A public health nurse went to his home to change his catheter, and volunteers and nurses visited him from time to time.

On the night of the Mid-Autumn Festival in 1995, there were six motorcycles parked in the yard of Ho-kai's house. Twelve people, including the nurses from the Six East Ward and Dr. Chen Pin-chen, celebrated the festival with Ho-kai and his mother. To welcome the guests, Ho-kai's mother prepared a big pot of vegetarian noodles, fruit, moon cakes, and some barbecued food.

On this day, Ho-kai's appetite was extraordinarily good. He ate all the food that the nurses barbecued. He kept asking for more and gobbled it all up. Everything he saw or heard others talking about, he wanted to eat. Since his physical condition was at its highest point at that moment, the nurses and doctors gave him everything that he asked for.

"Ma, I'll get well again. Li-yun, I will get well again, won't I?" He asked the same question of the nurse and everyone else he saw, as though he wanted guarantees for his survival from more people. But nobody wanted to tell him the truth. "Let's get together again at the Mid-Autumn Festival next year." Li-yun answered Ho-kai's invitation by suggesting that the next year he should prepare the food and let them all eat. Ho-kai happily agreed.

When Ho-kai was not asking for food, he would say he felt tired and wanted to sleep. The whole evening, he kept asking for somebody to look after him. Fortunately, some neighbors and the doctors and nurses from the hospital were there, so his demands did not overwork his poor mother. That night, the bright moon in the sky was silent and the group of people in the house were unusually quiet. In their hearts, everyone thought, "This is Ho-kai's last Mid-Autumn Festival."

Final Word

When Ho-kai appeared in the emergency room again, there was nothing that could be done. The time from his first treatment until his death was less than eight months.

When Ho-kai died, his mother cried bitterly, even hysterically telling her son, "Whoever hurt you, you get even with him!" Volunteers tried to soothe the mother's emotions, reminding her that she was a Buddhist and she shouldn't cause her son's soul to be angry or resentful. Shortly after, when the body was taken to the morgue, the volunteers accompanied the mother in chanting the Buddha's name for the deceased.

When the funeral arrangements had been made, the nurses who had taken care of Ho-kai occasionally took the time to visit the solitary old mother. The old woman maintained good relations with her neighbors. She often thought of her son and had already made arrangements for her own death.

Care for AIDS Patients

"AIDS patients are no different than any other patients," Dr. Lin Hsien-hung feels. "It is only that doctors, nurses and other caregivers must understand the patient's condition and danger and must take measures to prevent spread of the disease. Actually, when medical staff take care of any patient, they should take the same care that they do towards AIDS patients."

Nurse Chuang Li-yun agrees with this. She said that when Ho-kai first came to the hospital and she asked him about his medical history, he replied, "I don't know, I won't tell you." This was a reaction of denial that he was in fact infected. But later, when she was disposing of his excrement, he reminded her to use gloves. From this it can be seen that he was still a good person who could be concerned about others.

Every year since 1993, Tzu Chi Hospital and the ROC Nursing Association have jointly held the Eastern Taiwan AIDS Care Seminar. They invite specialists, senior nurses and social workers to speak in order to increase the bedside workers' knowledge. Chuang Li-yun feels that nurses are professional caregivers. Even when taking care of AIDS patients, they only need more knowledge and they will naturally be unafraid to deal with them.

Infection control team therapist Hsu Yuan-ping observed that by March 1996, ten AIDS patients had come to Tzu Chi Hospital. The sources of infection included blood transfusions, prostitutes and homosexuality. Each time an AIDS patient is in the hospital, the first priority of the infection control team is to go to the ward and instruct the nurses to take precautions, telling the nurses what to watch out for, such as being careful when giving injections not to prick oneself with the needle. At the same time they remind the family members, volunteers, and even the janitors to pay attention to methods of isolation from the patient.

Generally speaking, for the convenience of treatment and the privacy of the patient, Tzu Chi gives each AIDS patient an independent space. Even if there are two AIDS patients in the hospital at the same time, they are put in separate rooms in order to prevent spread of the disease. Hsu Yuan-ping also observed that education of the patient himself as well as the caregivers is also very important, such as understanding the seriousness of the disease, the need for follow-up blood tests of partners, changes in sexual orientation, safe disposal of the patient's excrement and clothing, etc.

Epilogue