to the push and pull of unwelcome and welcome changes, bearing witness to suffering and being there for the loved one, facing possibilities for change in the midst of confusion, and focusing on being close with others and living for today.
wasn't crying for her of AIDS but.. .of denying the whole thing and knowing that she can't get help support ...I don't think I can regret anything because I have done my part.
Koop and Strang (1997) reported that a recumng theme in the literature on bereavement outcomes of families of cancer patients was "the need for open awareness of the impending death and for careful and thoughtful planning of the location and circumstances of the death" (p. 46). We need to investigate whether there is a correlation between open awareness and bereavement outcome among families of AIDS patients in the South African context.
Foreboding
While some participants did not anticipate their loved one's death, a few others had a feeling that their loved one was about to die soon. Sibusiso remembered telling his brother's girlfriend that his brother "would be very, very lucky to survive the year. .. seeing the way he was and seeing my aunts dying the same way ... " Prudence recalled:
I had a feeling that I am going to lose my son. Four days before he passed away, he was in the leD. When I entered into the ward, my son looked like he was fast asleep. While I was there - it is the very moment that I will never forget in my life - I stand beside his bed and he started gasping.
I cried and ran out and when I came back, he was gasping blood. Oh, I cried!! I could not forget about that day. I had a feeling that my son was passing. I ask the Lord, 'Why, why, do I have to see this?' This should have happened while I was not there! I tried calling my Mom. I could not find her. I was crazy. Even today, I ask myself, 'Why I have to see that because it could have happened anytime when I am at home. '
She added: "The very same day he passed away, I was very tired. I could not do anything. I could not bathe myself... I got this bad feeling that something was wrong but I did not know what it was."
For both her brother and niece, Ragani had a warning that death was near. With regard to her brother, she recalled entering the hospital room: "It was the first time ever I saw him with an oxygen mask and his breathing was funny. And that is when the realization hit me, 'You know what, this guy is not gonna make it - he's going to die.''' She did not talk to anyone about this feeling because she felt she had to be strong for her family.
"I've got to put on this brave front and say, 'No, he's going to be alright.''' He died three days later. Ragani said that her brother knew he was dying: "Some of the things he said to me didn't make sense like, 'Please, I need you to take care of my children. I need you to make sure they get a good education... Make sure they marry a good guy.'"
Itwas difficult to gauge the extent of anticipatory grief among those participants who were expecting their loved one to die soon. Rosen (1998) suggested that anticipatory grief enables the person to involve the dying patient in tying up loose ends, ironing out personal conflicts and saying goodbye. The process of anticipatory grief appeared to be truncated among most participants, either because they did not expect to lose their loved one or they found out at the last moment that he or she was dying.
There has been limited research on the psychological impact of AIDS-related bereavement on families (Stajduhar, 1997; Robinson, 2001). A few qualitative studies have explored the experiences of family members as they care for a loved one dying of AIDS. Brown & Powell-Cope (1993) conducted in-depth interviews with 53 family caregivers of persons with AIDS. The term "family caregiver" was defined broadly to include biological family members as well as partners, friends, and others who were performing surrogate family functions. The final sample of family caregivers was composed primarily of partners and friends while parents and siblings only made up 17%
of the sample. The person with AIDS was usually a gay man and the study was conducted in an area in the US. The themes that were identified dealt primarily with loss and shifting one's sense of time to focus on living in the moment. This study provided a detailed and poignant examination of anticipatory grief among family caregivers of people dying of AIDS. Participants reported multiple losses as they confronted the
eventual death of their loved one to AIDS. The most painful and consuming aspect of living with loss was preparing for the death of their loved one, and other losses included dreams for the future, their personal freedom and their previous lifestyles. Loss pervaded all aspects of their lives including personal relationships, work, and leisure time. The researchers of this study concluded that "intense bereavement" occurs during the caregiving period as well as after the death of the family member (Brown & Powell- Cope, 1993, p. 188).
In looking at studies on the predictors of bereavement outcome, Koop and Strang (1997, p. 40) suggested that open awareness or awareness of impending death may facilitate "health grieving". For those who had witnessed the ups and downs of caring for their loved one for a long time (such a Ragani and Nomusa), the primary focus was probably on keeping the person alive, rather than contemplating their death. Itis possible that participants repressed their feelings because the prospect of a loved one's death was too difficult to accept.
Getting the News of the Death
The moment when their loved one died was etched in the memory of participants like Ragani and Zanele who were present at the time of death. Ragani explained:
She died in September but I knew in June, having been through two before that. .. when her eating habits changed. On September 5th, she was really, really ill - I mean extremelyill ...So I took her to our family doctor. He looked at her and said, 'I'll be very honest with you: Shanni is not going to make it." So I looked at him and asked him 'How long?' He said, 'Look, I am not God, but maybe two weeks.' So I said, 'Ok, fine' and walked out. But then I turned around and asked him, 'Are you sure?' He said, 'Just watch her tonight.' And I went home. The "watch her tonight' kept ringing in my head. I phoned the maternal grandmother (I did the right thing) and told her that Shanni was quite ill (She didn't know she had AIDS). I told her 'Shanni is quite ill, I don't know how long she will live.
Please come and see her'. And we called our closest relatives during this
time So the family came and visited her... And that night...it started at 4pm she started bringing up blood ... At midnight, her elder sister, my mum, my aunt and my cousin decided to stay up that night. At midnight.. .she was sending everybody to bed ... She told Indira to go home, she told Shanta to go to bed because she had to go to university tomorrow. She told my mother to go to bed 'because you have to get up early tomorrow morning.' She was merrily sending everybody off to bed, so I jokingly said, 'What about me?' She said, 'No, you sit here with me.' But nobody left... Around lam, she started fighting for her life... and at 2am it was as though she gave up the fight. She lay there comfortably... Eventually at 4am... she said, 'Carry me, please carry me.' I took her in my arms, sitting on the bed, and the next thing I know - it happened so fast - she's looking at me but not looking at me...Ihad never seen anyone die before... so I didn't know what was happening. So I asked my aunt who is an old lady, what was happening. She said, 'Just hold her close to you.' And I was holding her so close to me I could feel her heart beat - and I felt it stop... The last look - to this day I will never forget. She didn't know her RN status because we wanted her to be a normal child. We didn't want her to get depressed like her mother ... But the last look she gave me before she died -'What's happening to me?' She died, she stopped breathing. There was a little baby in my arms. I sat with her five or ten minutes. Then I lay her on the bed and then I walked away. I just walked away. I promise you, I did not touch her after that. I couldn't, I just couldn't. She and I had formed a bond - we were very close.... On Mother's Day, she made me a card which said, 'Dear Ragani, You are very lovely and I love you dearly'. That's the kind of relationship we shared. So when she died, something inside of me died. I can now actually feel how a mother feels to lose a child. Itwas terrible.
Zanele described the hours leading up to her sister's death:
The day she passes away, she called her kids and they came over, and she spent a lot of time telling them about HIV and how to take care of themselves and protect themselves against the virus. And after she was done ... she didn't want to sleep in the bed, so they made her a place to sleep on the floor, and she got on the floor and she struggled to breath, and after a few minutes, she passed away.
Prudence had been sitting with her mother and her baby's father in a different section of the hospital when she got a message that a sister wanted to see her. She turned to her them and said:
'Mom, I know why they are calling me. My son is dead!' I told my Mom, 'Owethu has passed away and I can feel it'. My Mom and his father were right behind me. I wanted to say my last goodbye to him before he was taken away.. .it was very difficult.
The first emotion several participants remembering feeling was shock. Sibusiso was not with his brother at the time of his death. He was informed of his death by his brother's girlfriend. He said: "Itwas a shock even though I knew he was very sick. You see, you visit him in the hospital and they tell you he is doing great and the next day he is gone... He's gone too soon."
Doris's husband had gone to work that morning and she found out that night that he had died. "They (hospital) called but did not tell me he was dead. I found out from a friend of mine ... He died at six o'clock in the evening." She couldn't believe what happened:
After I found out, I called my mother-in-law. Then she came and we talked. We went to the hospital and couldn't view the body. They said we
could not see the body because he had AIDS. That was the first time I found out he had AIDS.
Several participants felt that the way they were given the news of their loved one's death was not good. For instance, 15-year old Phurnzile went to visit her stepfather at the hospital and returned the next day, but he wasn't in his bed. She became frantic and went from nurse to nurse but they kept looking away. Finally, one of the nurses went into the office and "checked the books and came up and told me that he had passed away." It was doneina very matter-of-fact way.
The ability of medical professionals to deliver bad news to patients' families depends to a large extent on their training and own background with loss (Saunderson& Ridsdale, 1999). A study of nurses in AIDS nursing care facilities in New York found that nurse aides had more negative attitudes toward people with HIV/AIDS as well as greater discomfort caring for patients who were dying than registered nurses (Demmer, 1999b).
Studies are needed in the South African context that examine professional caregivers' (doctors, nurses, social workers) comfort working with AIDS patients who are dying.
We also need to survey the level of satisfaction of AIDS patients and their families with regard to end of life care and bereavement support.